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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
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2020
Joined: Jan 2012
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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
Joined: Jan 2012
Posts: 26
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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: 290
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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 February, 2018
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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
Joined: Dec 2010
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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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