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I've just had surgery for a tumor on the side/under my external tongue, and three lymph nodes in the same side of my neck. I lost a small amount of tongue, I almost can't tell the difference in size. I am 36 years old. I will be staged in a few days and make appointments to proceed with radiation and probably chemo.

I know people are down on statistics, and believe me I understand that if there's any chance of survival you hope and you fight, because whether your odds are 1% or 50% you are only one person and you may be that 1 out of 100. But I want some statistics because I think all information is useful in some way. I don't want to be shielded from anything.

And so, I have a question about this "five year rate" that I keep hearing about. Do I understand correctly that if you go five years after treatment without cancer returning, you are more likely than not free of cancer and will go on to live a normal life expectancy? Again, I am 36 years old. What's the percentage on people who go five years in remission and never recur? What is the percentage of people who treat cancer only once? Only twice? Etc. What are the odds of me living to 75/die of something other than cancer?

Last edited by AvatarMN; 01-28-2012 10:15 AM.

-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
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You know, I would kind of like to know the same thing. My surgeon told me that now I am more than two years out, that I have an 80% chance of beating it, but then I see that a number of people have had a recurrance. So, I don't know. Maybe I am better off not knowing.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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That's a good question, isn't it?

Last night, I saw a 91 year old woman who had tongue cancer a little less than 50 years ago. No we weren't at any oral cancer gathering. Hers was small like mine was but she did not have lymph nodal involvement. But she had radiation anyway because she did not want her tongue cut! So she had both external beam and the kind they put in your mouth--brachytherapy, I think. She looked pretty good I thought.
My daughter's father-in-law told me he has known a woman who had oral cancer and rather severe surgery for it 30 years ago, and she is still around, now in her 60's.

Anytime you add nodal involvement you add more risk.

Do you know for certain that you have three lymph nodes involved? Sorry, at first I thought you did not have a neck dissection, but see now you did. I guess you have the final report on that?

You can find various scientific studies which will give you different percentages. I have my own opinion but hesitate to give it to anyone! My ENT seems to feel my prognosis is very good, but I did not ask him what you are asking.

Sorry--this is probably not too helpful.
Best,
Anne

Last edited by AnneO; 01-28-2012 04:19 PM. Reason: neck dissection

SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
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Any answer that you get to this question has a 50/50 chance of not applying to you. You are a unique biological entity with a unique gene make up and nothing that happens to someone else will happen to you the same way. While our diseases and the different etiologies for them are the same, how it impacts our body is unique. There is no information that statistics are going to give you in my opinion, that will be actionable on your part. You can drive yourself over the end emotionally though, as we all - no matter how many years out from diagnosis we are - live with a sword over our heads. This is the nature of survivorship. I think the question about living to 75 and dying of something else, might be more dependent on other things than your cancer. Your diet and exercise habits, the genes you inherited from your grandparents, your access to quality healthcare in general, and then my favorites, how bad a driver you are, or if you piss off someone's husband ( the way I thought I might go as a young man). Anyone of a myriad of things can take you off the face of the earth, you couldn't count them all. I am astounded that I actually dodged so many of life's bullets BEFORE I had cancer, that when I got it, it was the first time that I seriously considered that I wasn't the chosen one to live in perpetuity.

http://oralcancerfoundation.org/facts/stages_cancer.htm

I am rather surprised that someone started treatment on you (surgery) without a full work up and staging. Staging after all determines treatments, and the NCCN guidelines that are the national standard of care re driven by staging. The way you worded it it, certainly seems like without knowing everything, and without a comprehensive treatment plan from a multidisciplinary team, treatment was started. Where were you treated?

Last edited by Brian Hill; 01-28-2012 04:13 PM. Reason: added link

Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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good question. i�m in the same dillema...


December, 2011 - T1N0M0 SSC Oral Tongue sugery (Dec 07, 2011). Partial glossectomy, primary closure. Selective Neck dissection, all 57 nodes free. 29 at diagnosis, no risk factors at all. No smoking, drinking and HPV negative. Can you explain? I can't.
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Hi Brian, my 1st tratment were surgery with frozen biopsy to check malignancy. After that they made a full pathology test to find me millimeters. My lesion were 0.63 cm depth and then the doctor said I�d have partial neck dissection because with this depth i had 50/50 percent of it had spread.

And fortunately all 57 nodes were clean. 0/57 is my favorite number...

then after all this crazy period i was staged T1N0M0.


December, 2011 - T1N0M0 SSC Oral Tongue sugery (Dec 07, 2011). Partial glossectomy, primary closure. Selective Neck dissection, all 57 nodes free. 29 at diagnosis, no risk factors at all. No smoking, drinking and HPV negative. Can you explain? I can't.
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All it takes is one teeny-tiny cell to be missed for a recurrence to happen. It happened to me, twice. As far as the odds go, I should not be here but I am. This is why I choose to ignore the odds. Ive seen lots of things on this forum since Ive been around a few years. Ive seen patients with recurrences almost immediately after they finished treatments and then others have recurrences years later. This is something that we are all afraid of. Its much more productive to go about living a good life and keeping the "what if's" out of your daily thoughts. There are many here who have beat the statistics. Ive seen members who should have been easily treated not get thru this even once while some who were Stage IV conquered it.

Try your best not to worry about the odds. Worrying will steal your time from you. Go out and make the most of every single day. None of us are guaranteed to be here tomorrow. Live for today!



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Thanks again for the new replies.

Like I said, I know not to hang too much on odds. Whether it's 1% or 50% I'm only one person and I can be that 1 in 100. And it may not make a lot of sense, but knowing odds will make me feel better whether they're good or bad. I'm afraid that no one can have a 40 year long stretch of remission. Any statistic at all would only help me; a bad one won't send me into a tailspin, knowing what the number is will lift me no matter what it is (unless it's 0). I can't believe this statistic isn't easy to find, it's literally the first thing I wanted to know.


-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
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Ben,
I thought I just told you about one person with a nearly 50 year remission in oral cancer. It happens in other cancers as well. I have communicated personally with one person on this board who has been in remission for over 20 years. There are likely others. Our cases are all different though and cannot logically be compared. That is why those meaningful statistics are not out there.

I asked this 91 year old if she ever had problems with worrying about her cancer coming back. "No. It doesn't do any good," was her reply. I myself try to remember that, hard to do sometimes.

My point and the point of others here is that you are worrying about the wrong thing. Make sure you are getting the best treatment and taking care of yourself right now. That is a part of your personal odds.

That is not to say that all or most of us have wondered about our "odds", but eventually you have to realize that "time will tell". Keep in mind, too, that there is always the possibility of new drugs, new treatments in those coming years.

Best,
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
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I deal with lots of doctors as part of my work at OCF. Treatment people from all disciplines and researchers both. I work with the SEER database numbers routinely as we are looking towards the future by reviewing the newly obtained data from the past.

http://www.oralcancerfoundation.org/HPV/pdf/JCO-2011-Chaturved.pdf

Of all these people, one good friend at MDACC who quelled the same drive for an answer in me told me the answer that he gives to every patient that he sees, for the very reasons I spoke to above. "Your chances are 50/50". He told me that he does this because in those who might have a lesser number, knowing it becomes a self fulfilling prophesy; people can just give up fighting or trying. In people with a number above that (who might still die anyway for reasons also mentioned above dealing with genetic predispositions) it may create unrealistic expectations.

Sooner or later, even if you become a student of the SEER database and try to plumb its depths of statistics, you will eventually come to a point of acceptance of the unknowable nature of your quest and equilibrium with it in your spirit. It might take you a year of perusing data sets, but in the end that is the only answer that exists - you cannot know anything definitive.

I wish that I had not spent my first couple of years of survivorship obsessed with this. In the end, while I can quote you chapter and verse of statistics from the SEER database, that data in its own way is flawed and can be biased. It can be twisted to mean what you desire it to, and in the end the answer will still be the same. There are no absolutes no guarantees.

Live each day fully as if it were your last, as tomorrow is promised to no one. My life has never been more productive since I embraced that idea, my days never so rich, nor fully spent in meaningful pursuits. I wish that I had lived this way before I had cancer� the things that I could have enjoyed and accomplished if I had just learned to live in the moment. To fully enjoy the companionship of friends and loved ones, to savor every meal for its intricacies, to fully embrace the joy of the good that passes my way and the pain of what comes in equal doses. That we are all going to die is a given, sooner or later it is everyones destiny, and almost never in a manner or time of their choosing. But not everyone fully lives. Awareness of the finite nature of our existence is the beginning, and release of the desire to try to control is the constant battle for most. So let me set you on a path. Your odds of living to a ripe old age are about 50%. Own it and get on with the living.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Well said Brian! This is something I have a hard time remembering.


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
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Thanks, Anne and Brian. You make excellent points.

But I see from those statistics you linked, Brian, that I was under a misconception that once you make it to five years your odds of staying in remission get better. They continue to go down. Is that right? The first figure on page 5. No one in the study who's HPV-negative lived longer than 15 years, and about 14% of those HPV-positive are still alive at the end of the 17-year study. I haven't been told I have HPV, so I think I'm negative. However, those numbers study only 261 people so is hardly comprehensive.

Well, finding the answer didn't brighten my day, but I'm glad for any information. I'm the sort of person who's bothered by not knowing something, more than by knowing that it's bad. I will continue to fight my hardest, and hope that I'm one of the very few, and do what I can to make it possible that I can be.


-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
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Great attitude. And attitude does count. Play the hand your deal the best you can. Just remember you never know what the dealer is gonna toss you. If it was knowable we all be making millions in Las Vegas!!


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Stats are a melting pot. This cancer - oral tongue cancer was traditionally a smoker and a drinker / old mans cancer - so say 80 percent of the diagnosis are still attributable to old men who are heavy drinkers and smokers. Most of them have other issues as well that contribute to their health... Hypertension - poor circulation, lack of exercise, unwillingness to stop drinking and smoking etc... Even with treatment the statistics will not be representative of you assuming you are young and healthy and are not a heavy drinker or smokers. Basically they throw everything into the same pot and come up with a number - but it's slanted more heavily in one direction to begin with because you're not a member of the majority who get this cancer (I'm assuming) so statistics are very biased. And I've discovered through reading that a stage IV can eventually walk away from this disease just as easily as a stage I may find themselves in a serious fight for their life. It's all about your dr., how quickly they move, your overall health and the choices you make, your outlook, your nutrition, your anatomy and how aggressive the cancer is.

One stat I did read and take to heart was - 95 % of stage one and two were alive 5 years after if they quit smoking, and went for a short walk daily. The number was lower but not horrible for stage 3&4.

I felt like crap but my neighbor and i, and our pooches walked everyday! For 20 minutes!!! Except for maybe 2-3. Days when I was my worst!

With regards to the 5 year thing - I've heard if you hit the 1 year mark the odds of a recurrence drop pretty nicely, 2 years a recurrence can happen - but highly unlikely - 5 years - almost unheard of - a dr. Told me that and this - usually if you are going to get a recurrence it will be in the first 2 years. That said there are people here who've had recurrences after 2 years and 3 years. It really is all about you. smile good luck! You'll get through it.

Alison



Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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I am a 36-year old who's never smoked, never drank (never taken more than a taste of any alcohol), never taken a drug, never had an STD in my life. I think there's not a viral reason for my cancer, though it's early and not every question has been answered. I have always had a weight problem, and have recently had hypertension. I never heard those were factors with cancer. Why I have cancer is a huge mystery, unless you believe the rumors about diet pop/artificial sweetener.


-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
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Re: Brian saying it was strange that I was operated on before I've been staged. Yes, that's true. I never got a second opinion, either... which I see now is frowned on around here. I am insured through my employer, with an HMO, and frankly I can't afford to be going out of network with my insurance. Or move. I expect you all will say I can't afford not to, it's my life, etc... but a life in financial ruin, and then take everybody down with me if I go? Plus I had wildly inaccurate expectations of what I was about to go through, at the time. Between the doctor initially telling me I had 70-80% chances of making it to five years, and a misconception that I had that after five years your odds of staying in remission go dramatically up and up and up until you reach normal lifespan... instead of the fact that it continues to plunge at the same rate. So I felt overconfident, is what I'm saying. I live in St. Cloud, MN. There is a cancer center here, where I will be receiving treatment. Centracare Health System's Coborn Cancer Center. http://www.centracare.com/specialty_centers/cancer/

But anyway I had a 4x1 cm visible tumor on the side of my tongue, and PET scan showed positive for 3 lymph nodes in my neck. They were operable and obviously they should have been removed, right? I wouldn't have been happy with them not being taken out since they were already advanced enough to be obvious and the consequences of losing the tissue in question are virtually nil. I lost a barely noticeable amount of tongue, to clear margins. Today my only complaint is some numbness and minor reduction of mobility in the tongue that gets better every day.

Last edited by AvatarMN; 01-29-2012 01:15 AM.

-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
Joined: Dec 2010
Posts: 291
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Ben,
Please tell me you had more than 3 lymph nodes removed. The recommended procedure for a cancer such as yours (similar to mine) is a surgery known as neck dissection where lymph nodes are removed, good ones as well as known bad ones, to make sure there are no more bad ones. They surely did not just remove 3 lymph nodes, did they?

I understand you feel you cannot go anywhere else. You could still get a second opinion though. You're not that far from Minneapolis. What about the University of Minnesota? Can you make a signature that will appear at the bottom of your posts to let us know what happened? For instance mine tells you how many lymph nodes removed, it was a selective neck dissection which means the surgeon decided he could choose the ones that were likely to have disease. Some disease could be undectable by the PET scan.

Cancer such as yours and mine is shown to respond better when surgery is done first then followed up when necessary (yours & mine it is/was necessary with radiation and chemo). That statistic is out there.

Regarding your concern about odds for staying in remission going down after 5 years, really I'm used to thinking of it as the odds of getting cancer going up continually. I think the odds go up for everybody, regardless of having had cancer or not, for getting disease--our bodies are not made to endure forever. 261 is not a large number, I agree. Truly meaningful statistics are perhaps not out there. I can absolutely tell you there are people who are negative HPV with their OC who have lived more than 15 years. Cancers of the oral tongue are not HPV positive cancers.

I don't believe I was given a staging before surgery. Because they thought it was strange that my oral cancer had metastasized, they were not sure all the cancer in my tongue had been removed, so they cut more out, but found no more cancer. All the other structures in my neck checked out, and following surgery they were certain they had removed all visible cancer. So it was only then they really knew what I had. Then two weeks later I found out about the extracapsular extension. That did not change the staging, just added chemo.

Ben, sorry you have been dealt this hand. In fact I'm sorry we all have been. But whatcha gonna do? It goes against my grain to give up.

This is longer than I intended. Let us know that you did have a neck dissection of more than the 3 lymph nodes.

Best,
Anne

Last edited by AnneO; 01-29-2012 06:52 AM. Reason: clarification

SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
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Ben

Okay, this time no songs from movies & Broadway plays popular years before you were even born. Instead, a dash of cold water[quote]The concept of �cure�

In medicine, a disease is considered cured when it�s been successfully treated and does not return. The concept of �cure� is difficult to apply to cancer because undetected cancer cells can sometimes remain in the body after treatment, causing the cancer to return later (referred to as a recurrence or relapse). Many cancers are considered �cured� when there is no cancer detected five years after diagnosis. However, recurrence after five years is still possible.
[/quote] This is an excerpt from an explanation of statistics from Cancer Network
Cancer net: understanding statistics

I hope you clicked thru Brian's link to the OCF web site's discussion on staging an how meaningless and misleading cancer statistics are to us as individuals.
Just in case, here is a direct link to just the statistics discussion on OCF OCF - understanding statistics
Please read that first.
Now you can take this link to the American Cancer Society web site statistics with the appropriate grain of salt.
ACS - survival rates for oral cancer
You can see from the chart where your doctor may have gotten the 71% figure. It even has a concise definition of the 5 year rate used in statistics
[quote]The 5-year survival rate refers to the percentage of patients who live at least 5 years after their cancer is diagnosed. Of course, many of these people live much longer than 5 years.

Five-year relative survival rates, such as the numbers below, assume that some people will die of other causes and compares the observed survival of people with cancer with that expected for people without cancer. This is a more accurate way to describe the impact that a particular type and stage of cancer may have on survival. [/quote]

Bottom line: You are young, healthy, motivated and getting TX. You didn't smoke or drink. You had surgery and can still eat and swallow. You can beat this.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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Ben.. I'm like you - no drinking, no smoking, no drugs, ever and no stds either (oral tongue cancer is not HPV related normally)... And I can top you - vegetarian! Yes on the artificial sweeteners, and yes a sugar holic! (not no more!) I think mine was caused by chronic irritation but everyone has their own opinion on that too. Bottom line.. It happened. I've quoted this before - an oncologist once said, a recurrence soon after treatment means they didn't get it all to begin with.

So if you hit the 5 year mark and have remained cancer free then your odds of it coming back are probably the same as the odds as everyone else maybe a bit higher because you've had it before but, you could also step off the corner and get mowed down but a Mack truck! It's a crap shoot! smile do what you can do to treat it, do what you can do to try and help prevent it from coming back... Hats all you can do.

Usually the treatment for oral tongue cancer is surgery (often tumor removal, and grafting- If there's a large chunk gone, and a neck dissection) this is usually after its confirmed as cancer through a biopsy. If the size is -as you say - 4 cm, x 1 cm then that's probably why they removed it all right away. I am very surprised they didn't remove your nodes! I had no node involvement when I was scanned, but in the 5 weeks between diagnosis and surgery - I had one pop up, but it didn't matter because my sugeon had already told me he was taking 40 out. And he did! all were clean except the troublemaker.

I didn't have a second opinion either. I found out through someone in the know who the top guy at our top cancer hospital was (this came from another local ENT who is also tops in his field) and was referred to him. Hopefully you are starting treatment soon - but do see if you can get a second opinion, And don't wait.

My tumor was 2.4 cm x1.4 (based on the scans and then confirmation after Surgery). I was told that that plus my single node put me at a stage 2 (two drs. Told me this prior to surgery). More nodes changes the staging a little but remember - it's all about you.

Good luck!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Ben, just because the name of your treatment facility says cancer center does not mean it really is one of the country's top centers. I checked the lists to see if your treatment center was included and unfortunately is was not.

Here are the top centers in your ares from US News.
Top Cancer treatment centers near Minneapolis-St Paul

Here are the NCI designated cancer centers....
NCI designated cancer centers

Here is more info copied from Leslie's recent post. It contains excellent important info to help you.
You'll see references on these boards to NCI-designated comprehensive cancer centers and cancer centers. In this context, the differences between CCC and CC have to do solely with research interests (broader in the case of NCI-designated CCCs), and both do take a multidisciplinary approach to patient care. Institutions apply to the National Cancer Institute for the right to be called "NCI-designated" -- it is a lengthy process that involves a lot of paperwork. About 20 leading US cancer centers are also members of the National Comprehensive Cancer Network; together they devise the treatment protocols that are updated annually and used by hospitals across the country.


Here is the link for National Comprehensive Cancer Network Centers.
National Comprehensive Cancer Network Centers

Here is the link for top US hospitals for cancer
US News top cancer hospitals

Last edited by ChristineB; 01-29-2012 09:07 AM.

Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Ben,
I am like you. I also have an HMO, and was treated at a Cancer center, but in a smaller town. My original diagnosis came after one dentist saying it was something, and two opinions saying it was nothing, and then one finally did a biopsy to find it was something. After that I never sought another opinion. I stayed with my ENT that did the biopsy. He referred me to the cancer center at the hospital and that who is I went with. I am not looking at being two years out of treatment.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
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Ben,

I was 33 years old when I was diagnosed, I had a young family, made a fantastic living and had almost the exact same questions and views as you did when I first came across these forums three years ago.

When I was first diagnosed, I thought more about what it would do to my family financially then how my death would affect them, I even took comfort in the fact that I'd been smart enough to have life insurance in place. Where the life insurance gave me comfort, it did very little for my wife and two young boys, who would rather have me then anything the money could buy. It was a very narrow way of thinking on my part in retrospect.

I became disabled and unable to return to my career due to complications from treatment and surgery, my wife lost her job due to the economy shortly after I started treatment. We went from making a solid six figure income to living off of the charity of others and my wife working two meagerly paying jobs to try and make ends meet. Four years (this month) later, we still make nowhere close to what we did before cancer and financially "ruined" when compared with the lucrative living we enjoyed in our former life. Yet despite our financial situation my family life is great, my wife and kids are thankful for everyday they have with me, and I them and we are loving life.

I was also caught up in percentages and odds etc as I was a businessman and rabid poker player in my previous life. It took me forever to get passed what the numbers said and realize that statistics mean absolutely nothing in individual cases. A 90% chance of living means nothing to those that fall in the 10% that don't make it. Three years ago, Brian thankfully gave me the same advice he gave you and that insight set me free in a sense. You see in my case, my odds of survival were horrible due to how late stage and involved my cancer was and thoughts of death constantly occupied my thoughts. Now, I just live every minute of everyday as it's meant to be, to the fullest as I know I'm not guaranteed my next heartbeat much less tomorrow.

I hope you eventually are set free from some of that thinking, I know I'm in a much better place because of it.

I have a blog on these forums, maybe you can relate to my journey of acceptance so I invite you to read Letting the Healing Begin under the Coping Anger/Fear section.


Welcome to OCF. Glad you found us, Best of luck.

Eric

Last edited by EricS; 01-29-2012 11:03 AM. Reason: always spelling

Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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Anne:
Minneapolis might still be out of network for my insurance, I think. I will find out.

The doctor may have said four lymph nodes were removed, I can't remember. How many are on the left side of the neck? Hmm, some Googling tells me they're called "Submandibular" and there are three to six of them. Is that right? So that would mean three would be on the left side, I assume. That would mean he removed all of the left-side submandibulars. Are you saying he should have taken the right side ones too? Or other ones near thee three left side submandibulars?

By the way, does the involvement of both tongue and lymph nodes mean it has "metastisized"?

Charm:
I believe I'm stage III or IV. I'll be told my staging on Wednesday. When My doctor said 70-80% he only knew about the tongue, he did not know about the lymph nodes. I think he gave me stage I statistics.

Cheryl:
If you reach five years cancer-free, odds are not the same as everyone else. Odds are 50-50 again. Every 5 years, you have to win a coin toss. You have to win it every time, or game over.

Christine:
Does it really matter that much whether you're at the "Ivy League" of treatment centers? Is cancer treatment really that non-standard? Maybe I could manage commutes to the Twin Cities. Or I might be able to move in with a friend in Tucson. She lives in a three-room house and she had a heart/lung transplant about 12 years ago but is in pretty decent health. I think she'd have me.

Angelia:
I'm sure I'm at a higher stage than you at first diagnosis, but nice to hear.

Eric:
I actually don't have a spouse or children. Just parents and a sister. Maybe I shouldn't worry about financial ruin since I can't pass it on. Man, I don't want to lose my house and ruin my credit for life, though. Obviously I should if my chances are so much better if I leave St. Cloud, but are they? Sounds like you started out wealthy and with an education. I'm starting out a high school graduate with a union job at a factory, insured by an HMO, living paycheck to paycheck on $34,500 before taxes, single and with no dependents.

All:
Good points on statistics, and I always had basically your view on them. I still wanted to know them.

Last edited by AvatarMN; 01-29-2012 12:09 PM.

-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
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Ben,


I'm a high school graduate with a year of community college under my belt. I grew up as a poor kid in an economically depressed area of Idaho, for many years my mom was a single mother of four kids and we lived in a singe bedroom trailer on the wrong side of the tracks. After high school I moved to Seattle, lived in my car for sometime while working my ass off.

Money, credit, even houses, cars etc...inconsequential in the larger picture brotha. Life is more then where you live, what you drive or how much you make. As a momma's boy I'll tell you that your family won't care about any of that either, just how much they'll miss you when you're gone.


Not to answer for Christine, who's as knowledgeable as anyone on Oral Cancer (she sure should be) but yes, where you are treated is critical. It is THE most important decision you'll make. If I weren't treated where I was treated and by the top Dr's in the field, I'd be dead right now. I know that.

Last edited by EricS; 01-29-2012 12:30 PM.

Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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Your choice of treatment facility is the most important decision you can make. A real NCI cancer center which sees hundreds of OC patients a year would be a much better choice than somewhere that might see 2 or 3 cases a year. Give yourself the very best odds and run to a cancer center! A lesser facility may be your death sentence.

Another thing that may change your way of thinking is money is not more important than saving your life. I lost everything I had the last time I got sick. But you know what? All that I lost was only 'stuff'. I am still alive as are my children and that is the best possible outcome. Material things can always be replaced but people cant be.

Oral cancer is a very fast moving cancer. You may only have one shot at beating this so why not give yourself the very best chance at getting thru this. This horrible disease is deadly. Please help yourself and get the best medical care you can.

Last edited by ChristineB; 01-29-2012 12:41 PM.

Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Posts: 26
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Eric: LOL! Didn't mean to call you a fat cat or imply anything about where you came from, your character, or how hard you work, man. Just saying that six figures is a minimum of 3 times as much as I make, no judgements or comparisons of either of us as people. Just numbers. My financial ruin would come faster is all. But I can't pass it on to my loved ones, other than let them drain their accounts on gifts to me while I'm here (which I will discourage within reason). That's an advantage I have over you.


-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
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Ben,

I didn't take it like you meant anything other then what was stated. I just wanted you to know that I'm not some super educated professional that you couldn't relate to. As you said, it's all just numbers brotha.

There was a point during treatment where things were going south in a very quick way for me. I was hospitalized for a week and had to have several blood transfusions, my MO wasn't hopeful. When lying in that bed, I never once thought about my credit score or money, nor did my family. We just wanted more time.

You're family is no different I'm sure.


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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Ben,

Listen to above. A good Cancer Center is the best way to go. I know for a fact. I went through 5 Dr.s who had no clue. They all told me something different and how my cancer should be treated. If I had listened to the ENT today I would have no teeth, I would have had radiation and chemo and NOT surgery. I went to a Cancer Center my surgeon told me your tumor is growing outward not inward that's a good sign, you'll have surgery and if no lymph-nodes are involved you won't need Radiation or Chemo. Thank God for Moffitt Cancer Center.

As far as health care I'm sure they will work with you. I have health insurance but with a 3K deductible. Moffitt worked with me.

Check out a Cancer Center, hope all works out for you, keep us posted.

Connie





SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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Ben,
I started in on a long email but decided to pm you (look under my stuff that will be blinking). It is mostly about my case, and lymph nodes.

The thing is, your community hospital could follow the NCCN guidelines for your cancer, they could follow the protocol of a larger hospital, and you could be more certain they do if you got a second opinion. Google National Comprehensive Cancer Network, or just NCCN. You have to join, or create an account, or something, but then you can get into and look at protocol yourself. Maybe you've done that.

Oral cavity cancer: you cannot rely on radiation to be your primary weapon, have to use surgery. I don't know if that applies to nodes of oral tongue patients, but I did have my treatment at one of those NCCN insitutions, MD Anderson, so I would guess that is the way to go. I've looked at the guidelines but it has been a while back. Yes, I think you should have had more lymph nodes removed. The PA to my ENT at MDA put it this way, roughly: we get patients all the time that don't have it all done right the first time, I guess partly because their doctors want to go easy on them, then they get a recurrence. His point was better get it done right the first time.

Yes, you have metastases to those three lymph nodes if the path report says so.

Best,
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
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Anne,
I responded to the PM. I will also include the question of NCCN guidelines when I see the cancer team on Wednesday.

And I think you may be underestimating St. Cloud. The fact that the facility is very new may account for it not being on the lists you like to see facilities appear on. And remember the doctors are not necessarily rookies and may come from where hotshots come from. My radiation oncologist, the only one I've met so far, is from St. Louis, MO. And St. Cloud is quite a huge medical town. St. Cloud Hospital is the largest hospital in the state, I think. And there are many other large medical facilities in town. The Coborn Cancer Center is part of Centracare which is very large, and it's surrounded by lots of other clinics such as the HealthPartners one where my primary care physician practices (my insurance HMO is HealthPartners). St. Cloud is the third largest metro area in Minnesota, after the Twin Cities and Duluth, and it serves the needs of huge swathes of the states. They may see a lot more patients than you think they do. I'll ask them how many patients they get, with oral cancer, as well. I have a long list of questions!


-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
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Ben

Neck dissection & lymph node removal is another area where IMO the general tenor of discussion on OCF needs more balance. FACT: It's a bad thing to have healthy lymph nodes taken out.
I've remarked before on how sad it is to read posts celebrating having 10 or 20 or more lymph nodes taken out with 90% or more of them turning out healthy.
It reminds me of the women who advocate having their entire breasts removed, even ones without cancer, because they'd rather be "safe than sorry". Of course everyone is entitled to acting on their own risk level.
This is just a reassurance that you may only have needed 3 lymph nodes taken out.
I was lucky that my surgeon kept up on all the new studies and she was confident that the radiation and chemo had taken care of the two lymph nodes that had had cancer. Other doctors do neck dissections automatically because that is what they taught them in the 20 century. She explained how important it is for a cancer survivor to have a robust immune system and how the lymph nodes are a major factor in that.
When the cancer did come back and I had to have massive surgery, she did recommend a modified neck dissection. Sure enough, the pathology report showed that those two lymph nodes were now totally necrotic tissue with no evidence of cancer. I did lose multiple healthy lymph nodes on all 5 levels but it's a given that neck dissections always involve such destruction. OCF has a good description of the types of neck dissection: OCF ND More doctors are going the selective route as it seems your doctor did.
Again, this is a subject like PEGs that people feel strongly about and one on which Doctors and surgeons disagree. In the end, you have to trust your doctor. If their doctors believe in taking out as many lymph nodes as possible, then that becomes some posters belief also. It doesn't make it true however for other patients. Just some reassurance.
Charm

Last edited by Charm2017; 01-30-2012 07:11 AM. Reason: added OCF link

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

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Yes do check out their history with oral cancer, a ccc is usually the best choice when it comes to any kind of cancer, because they have seen it all. I get that sometimes with insurance it's hard to go where the best treatment is available but here's the reality - oral cancer can spread rapidly, if you have a place that that ocassionally treats oral cancer they may be excellent, and know their stuff, but, why settle for a "may" ? why risk your life? If you know a ccc is the best place for treatment and that they do see your kind of cancer all the time and know how to treat it, then is this not the better choice? Even if you have to travel or pay extra. You can't put a price on your life or for that matter a time frame. I have two cancer treatment facilities within 10 minutes from me. One of which is my home hospital. In fact i personally know the head of know of them! They have good reputations etc. but I also have the top one in Canada - and one of the top 5 in the world - 20 -45 minutes away (depending on traffic) now everyone wants to work or train at a top hospital - but they hire the best of the best in their fields and give preference to the top students. They have a reputation to up hold. Which would you choose if your life were at stake? Will it guarantee me no recurrence? No - sometimes things just happen. However if I do end up with one I will know that I have done all I could prevent it... There really won't be any what ifs? Or regrets that I should have or could have done something differently the first time out, because i did what I could. smile
Good luck. Another thing - time is important don't let them take their own sweet time, push. Take fae.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Turns out the University of Minnesota is in my insurance network! And so is the University of Arizona, which is in the top ten. I have a friend in Tucson that might be willing to take me in for a couple of months. I will talk to my cancer team here in St. Cloud and ask them if they recommend me going to one of these places if it is feasible.

I gotta say though, going to Arizona and being so far away from my family during a time like this would be hard. And the University of Minnesota is only 70 miles away, but the idea of making so many commutes in the Minnesota winter is daunting. Stress-wise (even though I would not be driving), and just plain being able to make it at all to every appointment. I will ask the St. Cloud team to please level with me and try not to be biased on their opinion of whether I would be better off with one of these places instead of them.

Last edited by AvatarMN; 01-30-2012 03:14 PM.

-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
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Ben, it is your life, not that of your docs in St Cloud, nor of us on this forum. I'm so glad you checked that out. I understand your concern about the roads to Minneapolis.
Having lived in Tucson, I can assure you that it will be warm there.

Whatever you decide, we'll back you here. I/we just want you to get the best care you can within your comfort zone and insurance. I still think you need a second opinion regardless.
Your doctors at St Cloud should understand.
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
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Ben, if you havent already, contact the American Cancer Society. Let them know you probably will be needing some help with transportation. There are many volunteer drivers all over the country who will help you with transportation. I am one of their volunteer drivers in my area. I see all kinds of people with some only needing to go a few miles to others who commute to centers hours away. The ACS will even help you to pay for prescriptions and/or travel expenses up to $300. Where there is a will, there's a way! OCF is full of very important info that will help get you thru this phase of your life. People here really do care about each other, we are all in our own little club and we hate getting new members. If your current facility does not endorse you going for a second opinion that should be a big red flag to head for the cancer center.



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Jul 2008
Posts: 507
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Ben,
FYI - Coborn Cancer Center in St. Cloud reported treating 35 oral cancer patients in 2009 and in 2010. That isn't a lot.

Coborn is a CoC accredited community CCC, and their registry is well managed with a 96% lifetime follow-up rate, but I don't find the staff credentials all that impressive or specialized in Oral Cancers.

Source: http://www.centracare.com/specialty_centers/cancer/cancer_report_2010.pdf

By contrast, everyone I saw had extensive training at major CCC's and research institutes and the scanning, planning an IMRT technology was beyond cutting edge!

The capability and technology to diagnose, plan, deliver and monitor your IMRT is critical. Combine this with Chemo and having a team that knows how to keep you going WITH NO BREAKS in treatment is essential.

Many of the major NCI Designated CCC's can provide affordable temporary housing near or on the Medical Campus.

I understand money is a concern you have that I didn't (my insurance covered my treatments). My hope would be that you can find financial help to get you to a top notch CCC.

http://cancercenters.cancer.gov/



Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

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The wife of an OC patient posted this in February 2010 after her husband was diagnosed by an ENT. Since they live in New York City, several people here encouraged her to seek a second opinion for her husband at Memorial Sloan-Kettering, one of the top cancer centers in the U.S. She posted this after making an appointment there:

[quote=SusanW]The ENT guy said his practice (three guys) sees about one case of oral cancer a year. Sloan sees 3500. A bit of a difference. The strong message you guys sent me about where people should go is so important. I hope the word is out there.[/quote]
At the very least, get a second opinion from a large comprehensive cancer center (CCC) that sees a lot of cases of oral cancer; in Minnesota you've got the University of Minnesota Masonic Cancer Center and the Mayo Clinic Cancer Center, both NCI-designated CCCs. You may find that the treatment plan you get there is consistent with what St. Cloud is saying, or you may get recommendations that your local facility just isn't aware of because it either doesn't see a lot of cases or passes more complex cases off to CCCs. The local docs can help with arranging for a second opinion (and if they are hesitant, you should not be treated there), or you can call and make the appointment on your own. You do not need to ask their permission to get a second opinion.

Also, you can see the NCCN treatment guidelines here. And if you haven't done so already, look through the main part of the OCF website -- there's a lot of useful information there.


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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Hi there.. Also look into the university of Minnesota they may have local lodging... A lot do. It's a facility where you can stay Mon - Friday and maybe do the 70 mile commute on weekends only (perhaps family members or a group of friends can drive you back and forth ) - I know princess Margaret where I was treated has a lodging facility. this may be a good compromise. Also I'd like to state that BOT cancer responds more readily to chemo, and radiation. Oral tongue cancer can often be more aggressive, and and harder to treat than base of tongue - as BOT is caused by HPV in most cases - this being the case - often times BOT cancer is only treated with rads and chemo, but for oral tongue cancer removal of nodes level 1-4 is part of the standard. A friend of mine is losing her battle with this diseasea. Her cancer was in the oral mucosa - cheek initially (not HPV related) - the drs removed 20 lymph nodes, believing she was safe when the biopsy came back clear in all 20. After going home with no rads or chemo, she found a lump. Went back only to have another 20 removed - all of which had cancer. My dr told me in no uncertain terms.. I'm taking 40 out. I didnt argue - One was positiveI don't miss the other 39 smile and I'm glad theyre gone. I have some stiffness and loss of sensation. But other than that I'm okay. smile see what a ccc says If you can. Good luck!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Having weighed in early in al this, I have stayed on the sidelines lately. I hope that what you come away from after reading all this is that the people that have replied to you, actually care that you make good decisions. I don't think that any here have agendas nor facility affiliations that color their opinions. So the pushiness, to at least get a second opinion from another high quality institution is out of care not from some other source. Tough love perhaps.

There are HUGE disparities in healthcare in the US, something that until you are thrown into a situation like this you may never consider. They range from those with no insurance or job trying to find treatment (anywhere as hospitals for the most part are all run "for profit") , to those with insurance but in states that do not harbor cutting edge institutions, to people in HMO's that are constricted to seeing only those who will take the much lower reimbursement SOME HMO's are willing to pay (and make no mistake the best doctors get paid well), to people who are financially able to go to any institution in any state. There is no equality in health care. For having the most expensive health care system in the world, it is not applied equally to all of our citizens.

When you look at the US News and World Report on cancer hospitals that rates them, you get a rating based on survival statistics, modernness of equipment, education of doctors, number of doctors and nurses per patients and so much more. It is very unbiased. In general while some use the NCI designated institutions as quality, or the CCC system to judge them, I usually find that teaching institutions attract wonderful doctors who get paid well, are funded in a way that allows them to attract the best and brightest, as well as have the most modern and cutting edge technologies and equipment, and have (should the need arise) a great deal of FDA approved clinical trials being run there on experimental treatments and drugs, which is something not available to many hospitals. Of course those clinical trials are often last ditch attempts to beat the disease when standard of care (NCCN guidelines) treatments do not do the job.

Understanding all this, and getting your head around the idea that anytime your name and the word cancer are used in the same sentence it is usually not a good thing, or something that you should take casually, and lastly once all this is apparent - that a (any given) doctor is not equal to other doctors nor an institution or hospital equal to any other hospital, then there will arise the issue of NAVIGATING all this to your own optimum outcome.

I hope that what you get is that all of us want that optimum outcome for you, nothing more or less. While we have all had our own paths through this, and we have made both good and bad choices, and had varying degrees of health, difficulty, and long term quality of life issues after it all, we all have learned from that process, and have learned from each other. While there are still some disagreements between many of us, the one thing that the survivors who give of their own time freely for no compensation have in common, is that they come here to help those behind them on the path expecting nothing in return. While not doctors, nor experts, I would wager that the combined knowledge of people on this board, ABOUT THIS SPECIFIC DISEASE AND THE COLLATERAL ISSUES THAT ACCOMPANY IT, exceed that of many professionals in the industry who are not oral cancer specific doctors.

Like all the others, I wish you the wisdom and desire to make the best possible choices, and hope that your path through all this is as brief and successful as possible, with a rapid return to an active, happy, and normal life.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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[quote=Brian Hill]I am astounded that I actually dodged so many of life's bullets BEFORE I had cancer, that when I got it, it was the first time that I seriously considered that I wasn't the chosen one to live in perpetuity. [/quote]

Booooooooy howdy you can say THAT again!!!


Dx: 3/11 Stage III glottic laryngeal SCC HPV 16+ Tx Start: 7/18/11 chemoradiation 7wks - Tomotherapy IMRT x 34 / Cisplatin x 7 Tx End:9/1/11]-[as of 1/20/12 - ALL CLEAR!]


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When I say that I want to see what my St. Cloud doctors have to say about all this it's not because I want to surrender my power, or spare their feelings, or anything like that. It's because I want to hear about it from actual doctors who specialize in cancer. As opposed to opinionated people on the internet with a lot of anecdotal conclusions. No offense, I appreciate and respect you guys and you've given me a lot to think about, but professional opinions are needed too. They may agree with you. Or asking these things may bring out a vibe in them that makes me run the other way. We'll see. smile


-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
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Good luck... wink hope everything works out for the best. Let us know what you decide we're here to support you no matter what. smile


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Ben

[quote]As opposed to opinionated people on the internet with a lot of anecdotal conclusions. No offense, [/quote]

After reading your description of the OCF forum, it occured to me that perhaps you could address your financial concerns by writing an updated version of Dale Carnegie's: How to Win Friends and Influence People. It has sold over 15 million copies. Just my opinion.

Charm


Last edited by Charm2017; 01-31-2012 07:15 AM. Reason: toned it down

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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Ben, and Everybody,
I was fortunate in that my dentist who first saw the lesion on my tongue referred me immediately to an oral surgeon who took a biopsy. She then immediately sent me to an ENT/surgeon who did surgery on my tongue just a week after he saw me for the first time. He also sent me to a cancer center which conducted a PET scan prior to my surgery which determined there was lymph node involvement. I was also tested for HPV. (negative) I had all of my treatments at the cancer center, which is in Sandusky, Ohio, but is a branch of the Cleveland Clinic, listed by US News as one of the top ten cancer centers in the U.S. You have to have confidence in your doctors. Mine acted very quickly when I was first diagnosed, and my care has followed the same course of that of many of you. Everyone has differing views of their own care. We just have to trust our gut and our own instincts as to what works best for each of us. While my cancer center is in a relatively small community, it has the resources of the Cleveland Clinic to turn to if need be.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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Ben, I do find it a bit disturbing that you consider the advice you were given as 'only that of opinionated people with a lot of anecdotal conclusions'. You might want to start really getting serious and realizing that this is a fight for your life, its not just a numbers game. This is not debatable! We have attempted to help steer you in the right direction, its your choice to listen to sound advice or to think your way is right. There are no sides here, we are all in this fight together. You may not get another chance to beat this so it is only wise to help yourself by seeking out the best medical care you are able to get. Ive seen patients begin at a small facility only to find later they need the experience of a top notch cancer center and its too late. Oral cancer is a horrible disease with barbaric treatments which causes immense suffering in many patients.

When I first joined OCF, my member number was 4591. Today's newest member is 8591. That is 4000 members that have joined after me. I have been an active part of this organization for almost 5 years. During that time I have seen many people come and go, sadly many have died. I have learned an incredible amount of info about oral cancer. It is a known FACT not an opinion that the top cancer centers will give a patient their best chance to conquer this disease.

Please take a minute and reread Brian's post. If anyone knows the ins and outs of oral cancer it is OCF's founder, Brian Hill. Brian clearly wrote that the members of this forum are very well educated in oral cancer. Of course we are NOT medical professionals which is why several members including myself have urged you to get yourself to a cancer center for top notch treatment. No one has attempted to suggest any medical advice as if they were a doctor. When someone asks questions here, we all attempt to help, not just push ignorant opinions on someone. It wouldnt hurt you to spend some time reading the main OCF pages. It will help you get a better understanding of not just oral cancer but also the advantages of having others with experience help you get thru this.

I hope you weigh all your decision and choose very carefully. At the end of the day, it is your choice and yours alone. You need to trust your medical team to provide you with the very best tools to get thru this. No matter what choices you make, the kind members of this forum will try to help you with any of your questions.

Best wishes!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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lol, Charm I'd "hate" to see that book rewritten! HTWF&IP changed my life!

I first read that book when I was 25 and that was the "exact" moment when it dawned on me that I didn't know everything. It wasn't until I was 30 that I figured out that I was actually functionally retarded, and now at the ripe old age of 37 I've subscribed to Confucius' wisdom that real knowledge is to know the extent of one's ignorance. Since I've only begun to scratch the surface of my ignorance I'm still sticking to my retardation diagnosis. I understand it's a self diagnosis but I'm comfortable with my own medical opinion, as most Dr's would be, it's a pride thing.

Ben, read, really read Christine's last post and understand that not one person here has given you medical advice. They've tried to share common sense, which we all know is not so common. What we've all tried to point out to you is how badly your current medical team is handling you (what "respected" cancer care facility would perform surgery BEFORE getting staging information???) and that it's just "prudence" (may want to look that word up)to get a second opinion. The best advice ANYONE could give you is to get the ABSOLUTE BEST medical opinion available when dealing with the LIFE & DEATH situation you are facing.

One of my mom's favorite sayings is "You can't fix stupid." but you can fix ignorance. I understand you're ignorant when it comes to Oral Cancer, but don't be f'n stupid and discount the years of experience from the "survivors" on these forums, who've not only made it through this experience when the average survival rate of this disease is basically 50/50 but have helped thousands of others as well. We've also been witness to thousands of examples of people dying from this disease, many due to botched medical care from not following sound advice.

It's sad when someone doesn't understand the value of his own life, much less the value of the wisdom that only experience can give.

Peace out Ben, I hope you're just ignorant and not stupid.

Best of luck

Eric



Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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All I was trying to say is you're not doctors, and I will at the very least ask doctors what they think before I do what you say. That sounds like "common sense" to me.

But I see I've annoyed some of you, and I am myself annoyed right back at the responses to my feelings that "people on the internet < doctors". Sigh. I didn't say you were "just" or "only", either. And I thought I made it clear with what I said right after. And I didn't say I was going to discount anything you said either. Just that I wanted to hear from doctors too.

Last edited by AvatarMN; 01-31-2012 08:39 PM.

-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
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And maybe they did stage me but they haven't told me. I haven't seen the cancer center people since right after my scans, well before I had surgery. They probably staged me, and the surgeon did his part, and now I go back to oncology and get told that detail. I can't see how not having surgery on a tumor that could be seen with the naked eye and was 4x1 cm was ever going to happen.


-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
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The written word here, or in emails in particular, can often cause problems between people. In a face to face conversation there is so much more transferred; the tone of the speaker's voice, the look in their eye, the volume of emphasis on certain words that even can turn helpful words into what sounds like criticism. These forum lack those very personal components that contribute the nuance to thoughts, that allow words to be interpreted potentially differently than originally intended.

Having said that, you are right, only a few posters here are actually doctors (doctor/survivors) (3) or oncology nurses (4) but there are some here that lecture on oral cancers at major universities and cancer symposiums TO doctors, so there is real didactic and peer reviewed published knowledge, as well as knowledge gained through experience, which while anecdotal, is the basis of every support group in the cancer world. However, unlike every other support discussion board I have seen, OCF has the only board which is monitored by doctors and oncology professionals to ensure that no information is passed on that is factually incorrect, harmful, or might hurt another in any way. (8 rotating reader/doctors who do not post for time and liability concerns, but monitor and advise the forum administrator when issues arise).

We have had more than our share of people leave the boards, for that very fact. These are not a democratic forum, and there are no "rights" given to any poster to say just anything they feel or suppose is correct. No pushing of herbs, no clinics in Mexico, nothing that is a fringe idea. Posts which contain scientific errors are corrected or removed; much to the chagrin of the people that voiced the removed opinion. So in many ways these forums are unlike ones at other organizations or even list servers, that allow any opinion to live in perpetuity there. OCF realizes that one of the strengths of the forums is that given the way they are conducted and archived, that they can be mined for different subjects in significant depth. Hence the thousands of "lurkers" who get their information that way rather than enter into discussions. They have been the basis of several peer reviewed scientific papers that look at the patient experience, and are being used right now again for that purpose by doctors based at the Moffit Cancer Center in Florida.

Posters from this board were asked last year to contribute questions for a clinical trial looking at not only alternative treatment protocols for people with HPV+ disease in the oropharynx, but the actual patient experience itself. After all, who knows better than someone who has had to deal with collateral issues of treatment (doctors haven"t/don't) than patients who have had to live through them? The clinical trial questionnaire will collect data each visit from patients on a custom programmed iPad provided by OCF to 100 major cancer centers, and insights into things as diverse as nausea, pain management, emotional states, sexual behavior and more will all be explored. That trial should end sometime at the end of this year, and be peer reviewed and published in 2013. Our partners in this RTOG trial are the National Cancer Institute and the James Cancer Center in Ohio. Not exactly lightweights.

I take the time to detail all this here for the purpose of separating these forums from others that are unregulated that are rampant on the web, or open to any person's opinion or viewpoint, and that they have in the past and present, been valued enough to be used in actual scientific inquiry by partners whose stature is beyond reproach.

Lastly, a personal opinion about the staging and treatment issue. The basis of the standard of care (that which has shown the most optimum results when applied by the major NCI designated cancer centers given a patient's staging and etiology) and published by the NCCN so that smaller institutions with less experience or resources can apply the most current and useful treatments, is the foundation of treatment planning and application of those treatments in the US. Once that staging is determined (and you can find the current standards of treatment for different stages of disease on the OCF main site) then for reasons both legal and to consider patients desires, they are presented to the patient PRIOR to any treatment occurring. This is the basis of what is called informed consent, that keeps institutions and doctors out of courts and in practice. Without that complete development of a comprehensive, experienced based plan, by a multidisciplinary group of doctors being presented to, and excepted by, a patient� normally nothing goes forward. So to think that a surgical procedure to remove something obvious would be the logical first step isn't always true.

In my own disease I had a very visible stage 4 tumor on my right tonsil, bilateral metastasis of the disease to numerous cervical nodes, but no distant mets at the time of scans. My team decided that instead of a surgical solution followed by radiation and chemo, that it was more advantageous to jump into radiation first, which would clean up not only the very visible and large primary on the tonsil, but attack the neck mets and the very undifferentiated margins of the disease into surrounding tissues before they had a chance to spread further. (Radiation treatment has to wait for surgical healing, or surgical healing does not take place properly.) This plan considered that there might be significant loss of tongue function via the surgical route, and to avoid that, the alternative was going to be tried first. In the end, I never actually had any intra oral surgery, the radiation did it all. My surgery was limited to a unilateral neck dissection at the end of the grueling rads. So what might have seemed obvious to me and you (cut the majority of this F%^&ing thing out of me asap), was actually not the best approach, and I even as a lay person, was part of that decision making process, fully informed of why, and with a choice to opt out of the idea. It is also why today my tongue mobility and function is superior to many, because despite some damage from the radiation which has subsided over the years, there was the actually tongue structure there at the end it all to work with. I signed informed consent papers that took the treatment ideas all the way through to its conclusion, BEFORE anything in that plan was implemented... an important part of that process.

That is why in my first post back to you I questioned if you actually had been staged, the part that determines the whole enchilada before scalpel meets skin. So staging you and talking to you about it is the proper sequence of events to determine what the big hospitals are doing that has had the best results, and to get your sign off that that idea is something you are good with. Like you, I had a tumor so big that my gardener could tell it was cancer.

So to those of you that are posting here, please be patient with a person's desire to explore things their way (even though we know how bad delay or lack of a second opinion is to ultimate outcome) and Ben, be patient with a group of people that have watched too many people not make it, because of poor decision making, (based not on intelligence, but lack of knowledge about navigating all this) or a lack of a sense of urgency to find the best place and treatment plan in an expedient manner.

I didn't intend for this post to be book length, as I need to finish preparing for my upcoming lecture at NYU, but this thread was starting to get out of hand. I hope that it was both tactful and helpful.



Last edited by Brian Hill; 02-01-2012 09:17 AM. Reason: typos

Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Well said! Brian smile you can lead a horse.... smile

Good luck avatar. Seriously... Let us know if you need anything, despite our desire to nudge you in the right direction it is absolutely your choice, as Brian said our sole intent here is to help you towards the best possible outcome, we've lost too many friends (and I've only been here a year!!!) to sit back and not say something if we think something's not right. Take care and do let us know what happens.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Ben,
I didn't find this forum/site until well after my treatments had been completed. I wish I had, because it really would have helped when I was going through it all. That said, I wouldn't have done things differently than I did even without the information that is given here, but I have been one of the lucky ones. My dentist, oral surgeon, and ENT were very experienced in the treatment of oral cancer. I did go through the staging and everything that is reccomended here, so even though my cancer center is relatvely small compared with some of the others, I feel that my treatments were right on the money. I have heard many horror stories, however, of other patients who have not had the same care that I have.
Please keep an open mind, Ben, and even if you like your current docs, make sure that they are not afraid to refer you to some place else if need be. The people here all want what is best for you.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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guess theres no right or wrong information, after a total glossectomy & full neck disection straight away i thought it was a good thing and i would be fine. i did some research just to know and after the first " kaboom" here's your diagnosis would be better prepared. october last year i was told i had lung cancer ( which i knew already had been a strong possibilty ) and no cure which i accepted but the shock was back again when the problem on my buttock which had started in october and initially as a boil then an abscess was found to be scc after a biopsy was taken in early december operation. between the specialists there is some surprise for a supposedly unrelated scc to appear where it has but also that it seems to coincedental


45 yrs. peg tube jan 07/09 TOTAL GLOSSECTOMY jan 12/09
T3NOscc oral(ex smoker )
open tracheostomy , removed oct 12/09
modified neck dissection lymph nodes I to IV
rectus abdominal flap + full dental removal
30 day radiation treatment ,diagnosed with lung cancer oct 2011
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I've seen my oncologist. I have decided to stay with him, and the Coborn Cancer Center in St. Cloud, MN. I am impressed with him and with his and the center's accreditation, experience, skill, and quality of care. I will have to leave these forums if my decision to do so is called stupid or ignorant, and my confidence in my doctors and my treatment and care are under threat of being undermined by what people say to me here. New information on what I've learned from pathology and staging is now in my signature.


-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
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Wishing you only the best,
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
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Ben,

Feeling comfortable with your medical professional is important. After your choice of medical team, the two most important things, and really the only things you can control are your attitude (outlook) and nutrition. The rest is up to how your body responds to treatment.

I'd also ask your medical team if they've identified if your tissue samples were HPV+ or not (if they even knew to check as you've posted earlier they haven't informed you) as the choice of chemo will greatly depend on that knowledge. HPV+ tumors and Erbitux don't mix well.

Before starting radiation make sure they do a test on your thyroid and testosterone levels to get baselines as there are countless others on these forums that have had post treatment issues with those as well. Radiation and chemo are not fun, many of us struggled through it and the advice from survivors who have been there and done it have helped many through it, so I wouldn't advise lone wolfing it through that ordeal. I did and it was f'n horrible, it's not happy time with help, but it's one of the lowest depths of hell without it...from someone who's been there done that.


Good luck Ben.


Eric





Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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Hi Ben,

Getting back to your original question about statistics, have you seen this report?

http://seer.cancer.gov/csr/1975_2008/results_merged/sect_20_oral_cavity_pharynx.pdf

I�m a numbers person and spend my time slicing and dicing them. I know some people should stay away from statistics, but I won�t condescendingly assume you are one of them.

Good luck with your treatments. I pray you have a full and fast recovery.


Susan, CG to husband, diagnosed April 2010, age 56, non-smoker, no HPV
Mandibulectomy on left side May 2010 followed by 30 radiation, 3 cisplatin treatments.
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Ben

First, thank you for making me look diplomatic and considerate of other poster's feelings in comparison. We have so many ultra polite people here, that my rough and ready style can seem overly harsh without posters like yourself.

Secondly, I have no problem at all with your decision to stay with the ones that brought you to the dance. I definitely do NOT think it's stupid, nor ignorant in any way.

Third, cancer doctors, even the ones at the CCC I went too, do not realize the utmost importance of having your TSH levels of your thyroid hormone tested before any radiation or chemo. Trust me on this one, you want your TSH levels after TX to be close to what they were before the treatment. There is controversy over what is the right TSH level with labs and CCC's having a 5.5 or a 4.5 as okay even though endocrinologists who went to Medical school in the 21st Century conbsider 3.0 as the highest acceptable level. Before TX, I had a TSH of 1.6 and after TX it shot up to 4.3. Now that I am "on the pill", I am finally warm again. Plus my energy is back and I'm back down to 1.5

Last but not least: are you really going to let yourself be run off of this forum if somebody disagrees with your reasonable decision? I'll put it in your type of no nonsense language: Why would anyone ever consider some "opininated poster on the internet" as a threat to their confidence in their doctors or TX unless they really did not have any confidence in themselves. It's time to man up here. Don't be one of those guys who can dish it out but can't take it. Temper your own post tone if you want calm replies to them.

There is no alternative to OCF for real answers based on real life for the challenge of your life.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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Ben,

Some of us (ahem, Charm!) are an "acquired taste" if you will. I'm perfectly agreeable and pleasant at all times, as I of course expect everyone else to be...

Funny story, Charm and I's first encounter on these forums we got into such a disagreement that Brian had to lock the thread down. We've been friends ever since and I appreciate him, especially when I know he's the guy to tell it to me straight. Something you'll appreciate the more you deal with medical professionals.

To be fair, I've almost quit and been kicked off of these forums several times, cancer is a heavy subject matter and emotions can run high, even after treatment ends and "surviving" begins. I look at it like this though, we're all in this together as really nobody else understands what this disease is like other then those who've lived it, not even our Dr's.

Seriously we all wish you luck and I don't think you'll find any other support group out there with as many caring, knowledgeable people, I've looked.

Eric





Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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I had people criticizing me for saying "I'll ask/talk to my doctor about that" all the time. They seemed to want me to cut doctors out and listen to them only. I thought I was just putting it straight about the strangeness of crediting you all's advice being so perfect and comprehensive that doctors couldn't have anything to contribute. From one opinionated person on the internet to another, I wouldn't bat an eye at someone telling me I'm not a doctor and they're damn well going to talk to doctors as well as me. It wouldn't occur to me to think they were being undiplomatic or inconsiderate of feelings by saying something as obvious as the sky is blue.

Even so, I'm human and at a time like this my confidence is vulnerable to periods of being shaken, no matter how much of a big confident man I am the rest of the time. Sheesh.


-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
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Ben,

Trust me when I tell you, I understand. I live in a small town in BFE Idaho and went to a local ENT when I was diagnosed with very late stage Oral Cancer, my primary tumor was the size of the right side of my face. My ENT took it upon himself to send my case to the University of WA (#6 in cancer care in the U.S.) to get another opinion to "ensure" I had the best chance to live. Not only did he inform me of my options, he took that extra step because he knew how bad my odds were.

Had he not done that and went off of NCCN standard of care treatment, I'd be dead right now. The UW identified issues that my Dr (who has a really good pedigree if you will) couldn't know due to their experience.

What you should see as a recurring theme here are all of the posters sharing with you how many friends we've lost due to this disease. The outcries of "Get the Second!!!" is really our plea to you to just take that extra step because we've witnessed it too many times and experienced those losses. It's the history even a person like Cheryl, who's only been here about a year has seen too many times and we stress it because we actually give a damn.

We've also witnessed the arrogance and neglect of Dr's and due to that we've lost friends, some of us family. Often, as you'll realize when some people get a few degrees associated with their name, it goes to their head. For those of us who've been blessed to have fantastic Dr's who take it upon themselves to make sure their patients are properly educated to make life and death decisions and even take it upon themselves to get a second opinion for their patients...we get appalled and question the care (as we should) when we see that not happening for the patient.

So it's because we care bro. That's it. This ride just get's worse too as it progresses so we want you to prepare for that and support you right through this hell to the other side.

Anyway Ben, best of luck to you man, plug in or ask questions and we'll try to relate and support.

Keep your chin up man, you've got a fight ahead of you.

Eric

Last edited by EricS; 02-02-2012 01:06 AM. Reason: always spelling

Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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"Live each day fully as if it were your last, as tomorrow is promised to no one. My life has never been more productive since I embraced that idea, my days never so rich, nor fully spent in meaningful pursuits. I wish that I had lived this way before I had cancer� the things that I could have enjoyed and accomplished if I had just learned to live in the moment. To fully enjoy the companionship of friends and loved ones, to savor every meal for its intricacies, to fully embrace the joy of the good that passes my way and the pain of what comes in equal doses. That we are all going to die is a given, sooner or later it is everyones destiny, and almost never in a manner or time of their choosing. But not everyone fully lives. Awareness of the finite nature of our existence is the beginning, and release of the desire to try to control is the constant battle for most. So let me set you on a path. Your odds of living to a ripe old age are about 50%. Own it and get on with the living."

Thank you, Brian Hill, for these words for living. Sometimes, in these early days of recovering and "surviving", I have trouble remembering this. I need to post it somewhere in plain view so I can put it into practice. I've had a hard night emotionally and I can't sleep. Reading this post helped. Once foot in front of the other...


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
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Ben - did you get your biopsy back yet? Do you know the differentiation? What were your margins? Have they have they booked you for your rads? Set up your mask fitting? Given you the information about what you should be doing prior to radiation. Start eating as much as possible, if you are taking vitamins of any kind, make sure they don't have high levels of certain anti oxidants if they do stop taking them. (my hospital provided a pamphlet with information about the antioxidents) This can interfere with the radiation. Have your vitamin d checked. if you are fair skinned buy a good non oil based cream and start applying it to your neck and face skin... (hospital also told me this... And provided suggestions for certain brands) Have they sent you to a dental oncologist to have trays made? This kind of thing is really hard on your teeth and you should be xrayed, and any teeth you're not going to keep hopefully for the rest of your life will have to be pulled - radiation kills your saliva - and saliva is what gets rid of plaque for the most part , you will have to use floride trays for the rest of your life (not expensive 60 for the trays - 25$ for a huge bottle of flouride that lasts 3-6 mos) having a tooth pulled after radiation is a nightmare. It involves up to 30 dives in a hyperberic oxygen chamber to help promote healing as one of the side effects of radiation can be ORN (osteoradiation necrosis - not somethi you want to mess with as a number of people here have lost their mandibles because of it - your hospital might have an in house dental oncology clinic where you should be examined and decisions made re your teeth - mine did - most CCCs do I think - after my mask making it was stop one) if they don't have a dental oncologist - then get a referral to one. you should have a hearing test prior to treatment (cisplatin - most likely one of the chemos - or the only chemo depending on the dr. And hospital - can cause periferal neuropathy and hearing loss) and a head CT/MRI/PET should be done (one of the three) so they can set up where the radiation field will be - usually its a baseline CT prior to radiation. Stock up on a high calorie high protien drinks - ensure - boost - carnation. You should be able to eat up to week three, but things will eventually start to suck taste wise. Good luck there's so much to think about! Hopefully they're moving quickly with this.l the usual time between surgery and treatment start is under 6 weeks. The higher the staging the sooner it should be. Once you've healed from surgery they should be ready to go. Did they reconstruct your tongue at all? My tumor was 2.4 cmx1.4 they removed a chunk of tongue with the smallest margin being 6mm and reconstructed it with a flap from my wrist. Normally if it's something that is large (beyond a superficial amount of tongue taken, they reconstruct it immediately) I'm just asking because that would affect your healing time. we're here if you need to know anything else or just vent. Drs. Do what they do, but the fall out from all this stuff generally affects the patient so if something's up and your not sure if it's normal, chances are someone here had experienced it! Take care.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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What little I know about the margins is in my sig. I've already got fluoride trays molded, and know to suspend my supplements especially the ones with antioxidants. I'm having teeth out tomorrow, and we're looking to start treatment at least two weeks after that. During that time the mask will be made, etc. I've got a meeting the chemo oncologist next Wednesday, and then at that point they'll make the next appointment, probably for the mask. And if they don't offer tests for thyroid levels, vitamin d, and hearing test, I'll ask; they haven't been brought up yet. The ball is rolling.

I'm losing weight, not gaining, because I started 200 lbs overweight (now 160 lbs overweight). It's a very high nutrition diet, just low fat and calories. The diet is approved. I hope that's not the next thing people will disapprove of. This weight is doing me a lot of damage, and I can spare more than enough to get through treatment. At my weight, eating nutritious and the normal amount of food is all it takes to cause the pounds to fall of. Maintaining my weight would take an unhealthy diet. I could get 3000 calories and still lose 4 lbs a week.


-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
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Ben, I am really sorry for the life changing experience you are about to go through. These folks know a lot of the right questions to ask and I wished I had found them sooner. Once you get started please feel free to reach out to the group and share what�s on your mind, the good, the bad and ugly someone will respond and be there for you. I know many of us will be watching for your comments. I will be praying for you

MarkB


Dx 11/19/2011, SCC T2(2cm)N0 M0,BOT,HPV+
Tx 35 Rad(6996cgy)IMRT, No Chemo, Tx Done 1/17/12,
Never smoked, rare drinker, 52-Male
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Also be sure and concentrate on your hydration levels. I wish all treating facilities would mandate at least weekly IV fluids.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Yes and grab some protein powder to try and mix in with your ensure. Eating healthfully is the way to go. I would never recommend an unhealthy diet. I felt the same way when I went into treatment I had an extra 40 lbs on me. I could afford to lose it so I concentrated on healthful eating - no sugar - no white flour - and I'm a Veg head - but have been for years - protein helps with healing - your fine with everything by mouth now but later you may need the protein, when food isn't all that edible. Glad to see everything else I moving, and you have more information. Great on the margins and the Ned's - when you first posted I thought they'd only removed three good luck!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Ben,

I hope all goes well you'll be in my thoughts and prayers. I do want to tell you what happened to me. I went to 5 Dr.'s like I said in my previous post, but I didn't go into detail.

Here it goes...the last Dr I saw was a Radiation Oncologist he had my medical records in hand and asked me what are you doing there. I was dumb-founded. I told him the ENT (Surgeon) sent me here for Radiation on my tongue. The young Dr. who just came here from Mass. General told me he would never do Radiation on my tongue I needed surgery. He called the ENT he was so upset with him. The Radiation Oncologist had one of his colleagues come in to take a look, he gave the same answer, surgery. The Oncologist got on the phone and called Moffitt Cancer Center asking them if they have an opening for me to see the Surgeon ASAP. The Oncologist told me if you were my Mother you would be going to Miami to see Dr..so and so at a Cancer Center, Moffitt Cancer Center or a Cancer Center in the Boston area I can't remember which one he said. I had no clue what a Cancer Center was,I wanted to be near home for treatment. I didn't want to put anyone out driving me back and forth to Tampa.

Then I got hysterical for the second time here I'm 62 that was 3 years ago and I thought none of them (Dr.'s) know what the hell they are doing and I'm going to die.

I immediately came home and goggled Tongue Cancer that's how I got to this forum. A Dentist who has the same cancer as I do started talking to me online in the forum. After visiting this site for a few days he asked if he could call me. I thought for a minute thinking hmmmmm not so sure about this. The best thing I did was say yes. He said, let me give you my number and you can call me, I liked that. People on here know him he was very nice and told me what would happen. I was very grateful for him to communicate with me I was a little hyper about my cancer and what caused it. I blamed everything under the sun even my cell phone, how dumb was that. Everything he told me was right on the mark from my visit with my surgeon to aftercare.

When I walked in to Moffitt Cancer Center it was something I have never seen before. The kindness, caring, the place is huge and one thing I noticed was the high tech, the latest of the latest and the best of the best. I was told everything up front on my first visit. We're going to do this and that etc. etc. I took someone with me which you should do because it all went right over my head I was in a daze. My friend took notes, asked questions and when we got come he told me everything I missed.I was also told after surgery if any problems in the future no matter how many years down the road you come back to us you do not go to any other doctor. I thought you betcha.

I know this is long, listen to what people here are saying, go to the Cancer Center you've picked, but please ask questions start writing them down now, TSH levels etc. etc. You'll know at the end of your appointment whether you made the right choice.

Charm....I think you and I had this discussion before.....I had my lymphnodes removed 14 and all clear. My surgeon told me cancer cells are so small the CT Scan won't pick them up and to be on the safe side he recommended it but it was up to me. I did and I would do it all over again. If I didn't I would be sitting here thinking and thinking...I should have done it.

Ben....All of us here have been to hell and back with our own different cancer, most of us have a few good stories to tell. I know your upset and your mind is going every which way everything will fall into place and don't go away!!!!! Stay here with us the people on this forum are very knowledgeable. Yeah I know this is the internet and who is that person talking to you, we're all human like you.

Take care...Good Luck and God Bless.
Connie


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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I'm madly in love with everyone at the Coborn Cancer Center here in St. Cloud, MN. They're all great people, and strike me as very talented and professional. And to say "likeable" would be an understatement.

I'm getting my feeding tube and cath port installed on February 17th. And starting treatment on Feb 20th. 33 radiation treatments, 5 days a week. 3 chemotherapy treatments (Cisplatin) 3 weeks apart, to run concurrently. First chemo on the same day as first radiation, and last chemo 2 days before the last radiation. I'll be getting IV fluids at least 3 days a week. Monday, Wednesday, and Friday. I go in on Monday to have my mask made, and I have my annual physical with my primary care physician on Wednesday. I'll be asking about checking my thyroid and Vitamin D levels. Anything else I should have checked before treatment begins?


-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
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Don't forget your teeth. If you haven't already, see your dentist and get fitted for flouride trays, which you will probably use for the rest of your life. Good luck, Ben, you have a long road ahead of you, but you can get through it.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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Oops, I see from one of your earlier posts, that you had your teeth out. All of them? Your journey has been very similar to mine. My cancer started on my tongue and also involved the lymph nodes, and my radiation and chemo followed the same path that yours will. Again, good luck and keep us posted.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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Get your hearing checked and a full blood count with thyroid included. You will want to have a baseline of what is normal for you for the future. Glad to see you have decided to go with the port and feeding tube, smart decision.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Ben,

You have all the good people on the forum to lean on during the process. Take advantage, they will help you through this they are so very knowledgeable and a great group of people.

Glad you came back...God Bless... I hope all goes well, runs smoothly. Keep us posted.

Take care,
Connie



SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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My tumor was along the left side edge/under my tongue, and they pulled my four lower left-side molars. And I've had fluoride trays since a few weeks before surgery, yeah.


-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
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"OCF Canuck"
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That's great - did they rebuild your tongue at all? Good luck with everything as long as your not claustrophobic the mask making won't be too bad! Beware they lock you to the table... That surprised me the first time!!! Take care


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Ben,

You'll do fine hang it there. Mine was on the left side ridge too it was a T1 possibly a T2. If the Dr.'s didn't drag their feet it wouldn't have been a T anything!

I know it's scary at first you'll make it through this with flying colors.

Take care your in my thoughts and prayers.

Connie


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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The mask fitting and the simulation weren't so bad, and it'll be better next time because the mask is already made, and they won't have to stick me any more. My veins are hard to find, and it took three tries to get the contrast dye into me. I'm getting a cath port installed on Thursday, same time as the feeding tube, so I won't be stuck from here on.

I didn't lose a lot of my tongue to surgery, so there hasn't been and I suspect won't be any reconstruction. I only lost a 1.8 cm thick sliver off the side (6 cm long and 3 cm high). Margins were clear on all sides to 0.4-0.5 cm. My tongue is a little short, I can't lick the outside of my teeth very well. My swallowing isn't effected and my speech is effected more by the lost teeth than by the lost portion of my tongue. I feel very lucky, when I hear how little tongue some of you guys are living with. Or I will, so long as it doesn't recur because such a conservative amount was taken. Only time will tell.


-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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Yikes - seriously... My tumor was 2.4 cmx 1.4 cm - they took a third of my tongue and reconstructed it... are you sure it's cm. not mm? Regardless... Good luck!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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From what my doctor explained to me, there are 2 different types of staging. You are first staged after your biopsy based on the size of the tumor, then once again after surgery, based on whether any nodes were positive and if the cancer broke through the node walls. I was treated at MD Anderson. I know I was told before surgery I was stage 2, then after surgery they said stage 3.


Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011
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This is true they ball park it based on scans then give you an accurate staging post op. I stayed the same - I was a T2, N0 - the a T2, N1 - both are stage 2 (size- and nodallt) more nodes - bigger tumor - higher staging. Ugh! Take care!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Cheryl, it may be the placement of the tumors. Mine was on the left edge, and growing outward. Might yours have been placed more centrally? Or deeper, growing inward?


-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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I'm sure I replied to this however - mine was in the left side a little under the tongue - mid way back near your molars - it was growing inward, smile


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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connie-
i've never done anything on a forum b/4, but, at the end of your post,
where you noted your cancer, i realized that mine was exactly the same. i'm only 6 months into this, and thought how nice it would be to communicate w/ someone in the same boat. is this how i go about it?
i'm 63 and have seen only 1 doctor- the ENT who did the surgery. i've been happy with my care and treatment, but now wonder if i'm lacking in diligence by
not getting a second opinion or investigating a cancer center. my insurance is not fabulous but at least i have some.
i look forward to hearing from you,
harriet



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Harriet,

I tried to Private e-mail you it said you're over your limit. I don't know what that means.

Send me an e-mail and I'll write back to you.

Connie


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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Posts: 329
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Harriet,

Check your e-mail I got through.

Connie


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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Hi Harriet - welcome!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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