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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
Joined: Jan 2012
Posts: 26
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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
Joined: Mar 2002
Posts: 4,751
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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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