Hello everyone.
I was on this website several times last winter following my SCC tongue cancer. I had 1/3 of my tongue and lymph nodes on the right side removed. As you all know, it was pretty rough, but I got through it very well I think. Tried to make a lot of changes for the better for myself in order to deal with the "bad stuff". Lost a lot of weight this year and feel so good about myself, and then,,,,, boom..... Another spot that has turned to cancer. This one is much smaller and the ENT feels like he got it all and clean margins 2 weeks ago with out patient surgery. I will see him this Fri to take out stitches and discuss my options. I feel like they will recommend radiation this time after recommending no radiation after the Christmas surgery. I am really drifting here, trying to decide if radiation is the right thing, or just keep "watching" it. How in the world are we ever sure what the right thing is? I just don't know how I can make that decision. I wonder about going to some cancer center but I don't feel that it would do any good unless they had a lot of experience with these SCC types of tongue cancer. Do any of you recommend a cancer center in the midwest for a second opinion? Just feel like I am drifting around not knowing what to do right now. Hope I feel better about making a decision on treatment after seeing the ENT Friday. Thanks for all your thoughts...

Big

I didn't have Rad ..And I will tell you There are days I wonder if it was the right decision and nights I dont sleep. I am only 8 months out so who knows, We never know what the future holds. There are people here who have had Rad and had reccurences and those without it with NO reccurence so I don't think there are any guarentess. I am sorry I couldn;t give you a better answer. BUT I understand the question ....Did I do everything ..am I doing enough ?? I wonder it everyday .


Shar

If it were me, and if they consider this a "recurrence", I'd opt for the radiation. All I had was radiation and chemo, and like Sharlee, sometimes wonder if I should have had surgery as well. I had many sleepless nights and struggled with insomnia for years.

I think the only logical thing to do is to go to a CCC and have a tumor board make this decision with you. Right now you have one doctor, with one kind of training, recommending for you. I'd rather have a dozen from different disciplines together offer me a plan.

Just to add my two cents here, I was treated at a CCC and had only surgery. I go through the same thought processes as Sharlee and Gary and so many other members. Brian's point about dealing with only one doctor is a very valid one.

You should be getting a second or even a third opinion and hear the recommendations of specialists that treat head and neck cancers. Surgeons, radiation oncologists, etc. My surgeon would not operate without me having a radiation oncologist see me first.

Good luck.

Jerry

Thanks everyone,
Brian and Jerry both said to go to a CCC. Exactly what do you mean by a CCC. I have a friend who has had breast cancer and she totally believes that the MD Anderson cancer center in Houston is the best. I would like to find someone closer to Missouri if I could. My dr had a tumor board discuss my situtation back in January and they recommended to watch it closely. I have already had 2 PET scans and the last one in August showed nothing, but here I am in Oct. with a reoccurence and removed it already. Just scares me to think with the PET scans and watching it closely. (every other month lately.) I still have another cancer. Makes me wonder if you ever feel any confidence in PET scans and CT scans. He tells me that the tumor board will review my case this time also. I guess I will know after tomorrow. Thanks again for sharing your thoughts with me. Sounds like we are all in the same boat,,,, never sure if you are taking the right path or not... Just eats at yoy doesn't it?
Margie

comprehensive cancer center

There are also NCI designated CCC's

Brian,
Do you have any recommendations as to where to go? I'm sure you know what I mean when I say everyone has the answers for me but me.. All my friends and co-workers think they have all the answers and they are sure what they would do if it was them... The thing is, anyone who hasn't had this, just doesn't know, they just think they do. It is much harder to figure out when it is yourself. You have been cancer free for some time then? I think this forum is so much help for all of us, we certainly won't agree on everything, but it is so good to talk to people in similar situations isn't it? Thanks

It's a function of comfort levels, and economic considerations.

I did not choose my treatment center based on geography. On the main OCF site there is a link to additional resources. On that page there is a section on medical databases, and in that, a link that says best hospitals. This is an annually updated list of the best from 1-50 in the US. (There are hundreds more, but if you are not in the top 50, I don't think you can be consdiered one of the best... even being number 40 or 50 is stretching that definition in my mind.) When I thought I was going to die, I sought out who was number one.... it wasn't close, but when you think you are going to die, whats a few thousand miles for a chance to change your luck?

I might add to my earlier post that I went to a comprehensive cancer center and had a superb team. I am almost 5 years cancer free today and still see the original members of my team for regular followups.

Just for the record it was my head & neck surgeon who recommended against having surgery, that my mortality rate would actually be improved with RT/ct only. I also had a concurrence of the other team members.

Chiming in with Brian, a CCC is the only way to go with OC and I credit them with not only saving my life but also giving me a decent quality of life as well.

It is a fact that we have seen many die here because they sought out local treatment (mainly for personal "convenience") from well meaning but inexperienced (even "trusted") care providers. This is an insidius, aggressive disease and requires that every measure possible be taken to combat it. It grants very few pardons for Tx or Dx mistakes.

There are no guarantees in life however. My sister went to MD Anderson and still died from lung cancer (chain smoking right through the terminal phase of her illness). However that had nothing to do with the quality of care at MD Anderson.

Gary: I'm just curious....On what basis did your H&N surgeon base this statement on?
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Just for the record it was my head & neck surgeon who recommended against having surgery, that my mortality rate would actually be improved with RT/ct only.
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Thanks! Lois

Surgery can have enormous impact on QOL. If radiation and chemo can knock it down, that means you get to keep your tongue, swallow, talk, and so much more.

Surgery for the very small and early or for salvage of the really bad is the most common approach. If rad and chemo don't do the trick, surgery is now less aggressive, since the tumor is smaller from the previous treatments. Cutting away less of those needed structures that you can't (for the most part) put back.

Big,

Sounds like a CCC is your best option. Just to share my sisters choices and outcome. She discovered her OC on the tongue very early. She was a dental hygienist. Had surgery to remove less than 25 % of her tongue. The cancer returned to glands and nodes in neck, had modified neck surgery, declined the radiation that was recommended. Was a very young 48 yr old with healthy habits, veggan, etc. Always came back strong from the surgeries. It came back again and she had a radical, still declined the radiation. Cancer returned to her carotid artery and surgery was no longer an option. She underwent radiation and chemo, but passed away 5 months later. I don't know if her outcome would have been different if she had undergone the radiation after the 2nd surgery, but just shows you how aggressive this cancer is. She worried about the after effects of the radiation and quality of life issues...she has no life now. I miss her everyday and wish she was here. This took place in a 2 1/2 year span.

You are in my thoughts and I hope you find the treatment, just remember the aggressiveness of OC.

Nancy

Hi Thomas here. I had radiation in Dec. 05 / Jan. 06. For me it was the right thing to do. In Feb. 05 I had day surgery to have a small tumor removed (T1N0M0) from the right side of my tongue. No radiation then.
Over the summer of 05 it grew back. I had an other bi-opsy in Sep. 05 witch came back positive. I had the big surgery in Oct. 05 (see my write up in "Introduce Yourself" happytobealive) I ask my doctor
if I would have gone for radiation after my small surgery in Feb. 05. Would that have prevented the big one in Oct. 05 (T2N0M0). My doctor said YES for sure. Without the radiation I had between 0 and 40% change
for this thing to come back, and with the radiation between 0 and 5% change.You do the math. This is a no brainer! Some people get off easy, and I was one off them. Yes I had the burns. Yes I lost
50% of my saliva, and yes I lost part of my taste (witch has come back). So it is not the end. I wish everyone lots of luck, and health. Thomas in Calgary AB.

Hey Big Twin,

Did you ever figure out how to find a CCC near you? I noticed you live in Missouri. Barnes-Jewish Hospital, which is affiliated with Washington University is in St. Louis. You might try there.

-darcy (Matt's Mom)

Hi Big Twin;

I have arrived a little late and don't know where your decision rests at the moment, but for what it is worth, I'll share with you my point of view which I believe is widely held and well validated through positive results. Take the most aggressive course that is recommended right from the outset, because you really only get one first shot at a cure.

I recall one radiation technician who was charged with educating me for the daily radiation regimen - you know, what to wear, what to expect, and so on - and he referred to my case as being a "serious cancer."

I knew what he meant, but to the lay person, any cancer is a serious one, especially if you're the patient. But I'll never forget the look on his face when he used that phrase; my prospects for survival were remote, and everyone had accepted that except me; realizing the seriousness of my situation was one of the scarier moments for me.

Ken went on to explain that they felt that my disease had advanced to the point where I had only one good shot at it, and they'd rather take an aggressive approach in the pursuit of a cure right from the beginning than be distracted with concerns about side effects or quality of life issues at that point in time. I didn't want to leave anything to chance - my survival in particular - and I couldn't wait to get started.

To me it was like getting on a roller coaster the first time; once that safety bar clicks closed, and the cars start to move, there is nothing you can do now but hold on and hope for the best. No sense in freaking out or worrying about the outcome because you will get there soon enough. May as well just set your mental attitude switch to "Full Persistance" and get ready for some heavy weather.

Anything less is like the fellow who smoked "light" cigarettes; did he believe he might only get "light" cancer ? Or what about the boater who questioned whether he should wear a life jacket or not. As a member of the Coast Guard Auxilliary at the time, my most frequent reply was "wear one only if you want to be found..."

Cancer plays by no rules and where no holds are barred. I believe you must fight fire with fire, and in order to give yourself the best possible chance of a cure you must put the pedal to the metal so to speak, full force, and keep it there for as long as you possibly can. Cancer is a disease you only want to battle once; trust me on that one.

But whatever your decision, I hope it will be on a fully informed basis and made only after much consideration of all the options and recommendation available to you. Once made, stick it out to the end being mindful of flexibility and adaptability along the way. When its all said and done, the decision you make will be for keeps, and hopefully it will be the one that works for you.

The cancer community is a phenomenal group of dedicated, caring professionals who have a genuine interest in your survival. That much you can take comfort in and be assured of in my opinion.

I wish you every success in your treatment, and while you're at it, be sure to kick this horrific disease in the butt for all of us!

All the best,
JT2

I go to Ohio State James Comprehensive Center.. they are 1 of the top 15 in the country

I constantly talk myself out of posting, because I don't want our path to affect any others, but maybe I'm wrong.

Dennis was diagnosed in 2002 with stage III tonsillar cancer. He endured rad and chemo then, but, because he wanted to preserve his voice, we opted out of surgery. His line of work relied on his voice.

He had a PEG tube at that time, but refused to use it. By God's good grace, he achieved remission (only after losing 40 lbs).............for four years.

One month shy of his "so-called" five year mark...he was diagnosed with worse news.

I remeber the radiation oncologist talking to me during his first diagnosis. She told me upfront that this was her only chance of curing him. This was it. He had to quit drinking, and smoking. I'll never forget her wiping tears away when she saw our youngest son playing in the halls.

She didn't lie. He didn't quit drinking (not for two years), and never quit smoking. (More heavily, if you ask me)

You have one chance to beat this cancer. Take every advantage given to you. This is not the time to think you are invincible. Yeah Dennis did,....now he has no tongue, no voicebox, and we are fighting the insurance just to get him food.

Please, take advantage of every source available. If the insurance doesn't approve one method of treatment, and you want to persue it, call back in a couple of days. In my experience, even though you think you have exhausted all avenues, it isn't necessarily so. You wouldn't believe the issues I've faced just getting Dennis his Jevity.

Take a stand. Don't be intimidated by the so-called "doctors". This is your life,......fight them for all it's worth.

Take every avenue available, and God Bless.

Love,
Mandi

Seven years ago I had a stage 1 removed from the left side of my tongue. I had radiation and it was miserable but I got through it, lost all of my saliva glands and some taste ( the taste came back somewhat) Now I am sure it is back, almost in the same spot. Have a Dr. appointment in two weeks to see what is up, I thought that my Dr. told me once you have the radiation and it comes back there is no more radiation that can be had. Does anyone know about this?

Con,

You can have radiation again in many cases.

I suggest that you start a new topic as this post is bound to get lost here as you have posted in someone else's thread..

Jerry

Lois,
I realize that this is a very late response to your question but the head and neck surgeon told me that, in addition to all of the issues that Brian mentioned, there was also a much greater risk of infection due to the amount of time I would have been on the table - 14 hrs+. In addition to that, I would have required radiation anyway which probably would have caused a pectoral flap failure and I would also be at lifetime risk of aspiration induced pneumonia, not to mention rather severe QOL issues in general.

My team made their recommedations not only based on the medical issues, best odds for survival and QOL but also how it would minimize impact on my current (at the time) life and who I am as a person - somewhat of a holistic approach. I was blessed with a great team from 2 different medical centers, Kaiser and UCSFCCC and they had regular conferences so it was truly an integrated medical team. Five years post I am still seeing them and would not hesitate to follow the same plan. After a lengthly recovery, I have built a building from scratch, started a business, became vice president in another business and resurrected my original core consulting business. I also DJ and play live music as well and have a very busy agenda. The only thing that hasn't come to pass is my oncologist stating "well 2 years from now when you're fat again..." That didn't happen. I lost over 60 lbs and gained 30 back and am at a perfect BMI which has remained stable.

At five years post, I am happy with my decision, not that it hasn't caused me angst periodically or the issues with collateral radiation damage to neck muscles, which Ed (Uptown) eloquently describes in one of his recent posts. I got a lifetime supply of Valium out of it though so it could be worse;-)

Gary: Thank you for your response. I'm sure I'm suffering from information overload; I'm just so perplexed by the many treatment plans offered by various doctors across the U.S.

I sometimes forget that Buzz is nearly 77 years old, and was sincerely surprised by the aggressive treatment suggested by ENT at Baptist, due to his age. I'm sure if he had been younger, or if the cancer had been elsewhere, a totally different regimen would have been recommended.

I appreciate your clarification!

Lois

Lois,
IMHO it sounds like they are going to hit this thing as hard as they can because they think he can take it. There has been older folks then Buzz go through this. One thing that has always amazed me is just how resilient the human body is. We have a built in will to survive.

His treatment plan doesn't sound much differemt than many far younger patients here have recieved so I am not sure that I agree with you that a "totally different regimen would have been recommended" if he had been younger.

Based on his staging and TMN, it sounds to me like a standard protocol for an aggresive treatment plan, right out of the NCCN Oncology Practice guidelines.

At least there is reason for hope - this is definitely not a palliative treatment plan..

It's a given that this will not be a walk in the park and there may be some very difficult days (regardless of his age). You can only fight the battles as they come - one day at a time. Try to stay focused on the "now" and not on what "would, should or could" be.

By the way, at 77 my dad re-roofed his house and was very physically active (practically killed me - he was like a mountain goat up there and carrying full bundles of asphalt shingles to boot). He passed away at 92 from non-Hodgkins lymphoma. The very day he died - he said he was "going to beat it" - and he did.

"The very day he died - he said he was "going to beat it" - and he did."

...what a beautiful testimony...thanks for sharing, Gary!

When doctors and their assistants praise Buzz for his progress, he always tells them, "Sure, I'm doing great, I have the best nurse that love can buy"!
This statement always makes tears come to my eyes.
Like your dad, Buzz was 'volunteering' at least 20 hrs/week at our local country club, maintaining all the grounds equipment, running the Pro Shop, then playing 18 holes 3-4 times a week, even up to the day before his surgery in July when he shot a 68!
It is my belief that God don't make 'em like these guys anymore!

Thanks for your response to my post!

Lois

my mom didnt have radiation, just surgery on her tongue .. how it got to the neck ..and now to the lungs ..they are just not sure ...

I think maybe if they would have given her radiation and removed all her nodes in the neck this might have been prevented .. but .. then again ..who knows

H