Hi guys. I saw ENT etc yesterday. I spent the whole day meeting with different docs, specialists. They all went away and convened and came back and told me what will happen. I have surgery on the 12 September. Will have part of my tongue removed, then tongue flap (docs here call it free flap) from my wrist. I am having my lymph nodes removed from the left of my neck. They are getting to my tongue through my neck underneath my jaw. Will have all the usual treatment with that, trach, etc. They are thinking radiation will be done. I have been told to have this cancer so young, it usually is an aggresive type. My question is: If it is aggresive, should I even consider not having radiation. Should I insist they do radiation? I know it is a hellish time having radiation, but from your experiences, should I just go the whole hog and get it all done? I know it may be a silly question - but I have only met one other person here in NZ who has had this cancer (they are 47 y o) I am young and otherwise healthy and feel I can handle the agressive treatment. I dont want to have to be told in years time it is coming back and have radiation then. Docs (here in NZ) are perplexed as to why I have it so young. My paternal grandmother died of oral cancer in her 60's. I dont have any information about her experiences. My maternal grandmother died of liver cancer. My aunt has had several lip cancers removed, my mother has to have mamograms every few months, but no worries yet. My uncle died of lung cancer in his early 40's. So you can see my family history. I dont expect any huge responses from this...just a yay or a nay to radiation :p Take care everyone. Thank you for sharing your thoughts.

I just read a previous post "is radiation nec". I think that has answered my question a bit better....

Karen,On Apr 21,05, my husband[who had his 63rd birthday yesterday] had surgery to remove the tumor which was in the floor of his mouth, bilateral neck dissection,some lower jaw bone removed,all but 4 teeth extracted and a peg inserted. He then had 30 IMRT rad txs which ended July 8th. He had his Peg removed Aug 24th. He has had some rough weeks through this, but tonite he ate pot roast with potatos,onions and carrots. There are more and more things everyday that he can eat[his biggest issue is going to be no teeth for a year] He is dealing with saliva problems and carries water everywhere he goes, but he feels better every day. After doing much reading here, it seems to me that the prevailing wisdom is to throw everything you can at this disease. Best luck, Amy

Dear Karyn

I would put that question to your docs - could they tell you why rad may not be necessary. Tell them you are puzzled.

Sometimes docs forget to tell us what may seem obvious to them while we are getting quietly anxious!

I have learned that the same cancer varies greatly from patient to patient. Your group of docs have assessed your individual case and used their expertise to recommend a treatment regime. Only problem is they haven't communicated well with you.

At the beginning of my journey my gp reminded me that I was in charge of my disease and treatment. Get on to your principal doc and either make an appt or have a long phone call.

I wish you all the best for your treatment, love from Helen

Hi there, thanks Helen and Amy.
When my docs met with me after they decided best treatment method they were all had different opinions of radiation at this point. The 'head' doc had said to the other docs he was fairly sure I would need radiation. I guess I will find out on the removal of lymph nodes(?) I am fairly sure at this point I will say I want radiation. I have been told to ask as many questions as I want...and I will. I am interested in your opinions.....
Take care, Karyn

Karyn,
Radiation is one of the tough questions, especially with a stage 1 or 2. I had stage 4 and had radiation but know of someone else on this site that had my same cancer with one lymphnode involved and didn't have radiation. He is doing fine five years later, so go figure. Alot depends on the opinion of your doctors and on your type of cancer. Even knowing of the fellow patient that didn't have radiation, if I were made to choose today what treatments I could do over again, I would still have radiation.
Good luck with your decision.
Minnie

Hi Karyn,

When you say that the 'head doc' met with the other docs, is this a team of different specialists, like an ENT, an oncologist, radiation oncologist, etc? Usually, each specialty thinks his treatment is the best route. There are a number of posts on the forum that tend to argue that you want to hit this disease as hard as possible the first time with a multimodal course of treatment, so that there won't be a second time.

If you do have radiation, you should ask your doctors about combining the radiation with chemo. Recent studies indicate that the combination of radiation with chemo is more effective than radiation alone. See the news story:
http://www.oralcancerfoundation.org/news/story.asp?newsId=809
as an example. You can also do a search of the OCF site for more information.

Also, to quote Brian Hill from one of his recent postings
"there are different kinds of chemo. The one they are likely referring to is to make the cancer cells more vulnerable to the radiation. This is different than the kinds of chemo they give you for distant mets. Chemo and radiation together have good outcomes in the published data. I'm a proponent of hitting it with everthing that is available. This disease is very unforgiving of half-measures, and you want to eliminate it completly the first time around. While others may disagree with me, I'm an advocate of the biggest hammer type of treamtment...if you can tolerate it, let them do it."

Hope this is of some help. Best wishes for a successful treatment. - Sheldon

Karyn,

My team of doctors seemed to believe in the "big hammer" approach. I was 39 when I was diagnosed 16 years ago (and a nonsmoker) -- Stage II with no lymph node involvement. While the surgeon was able to get clean margins, the pathology report indicated that the tumor was likely to be aggressive, so I had radiation as well and so far haven't had any reason to regret it. I did have many of the nasty side effects during treatment and for awhile thereafter, but the memory of them has long since faded into the background, and I'm very glad not to have had a recurrence in the meantime.

Cathy

Hi --

You are not that young for this cancer -- my husband's ENT said she is seeing more and more people in their 20s and 30s with SCC of H/N. She feels it is due to human papilloma virus or similar, rather than smoking, as many of these are non-smokers.

Whether you get surgery or chemoradiation seems to depend not only on your stage but where you go for a consult. Johns Hopkins, MD Anderson and Sloan-Kettering (the 3 top CCC in USA) rarely if ever do tongue surgeries first, they feel chemoradiation has as good a record and without the long-term swallowing and speech impacts (but many rather nasty side effects, some but not all acute rather than chronic). Surgery is reserved if the chemoradiation does not achieve control. Have you gotten a second opinion from a radiation oncologist? I strongly recommend that anyone with cancer should get a second opinion from a different treatment center if at all possible, in fact in USA some insurance companies require it. We went to two, Hopkins and Sloan, and they both told my husband (who has base-of-tongue SCC) to do chemoradiation, not surgery.

Gail

Hi there...I am taking in all of this
I seem to have a lot of trust in my Docs at the moment. Number one reason would be the stats for NZ. Only one female died of SCC tongue last year with only 3 registered as having the cancer. You can triple that for men. And of course a lot older than myself. I have been in contact with one other lady here in NZ who had a very care cancer but much the same treatment, she is 47.
Second opinion? I attended the cancer centre here and saw a total of eight doctors and they all had slightly different opinions. Surgery was strongly rec by six of them. I have a few weeks up my sleeve to think...
Thank you so much for sharing your thoughts. I so much appreciate any advice at this point and am so thankful for this wonderful meeting place.

....Oh and all of the ENT and Onc were trained in the UK and the USA

Karyn, I am a stage II who ended up choosing to have rad and chemo after surgery. I think the advisability of doing surery first, and the sense that there is some choice involved in what you do about rad, is a bit different for Stage IIs than for people in the more advanced stages (as in Gail's case) because it is possible that in some cases, based on the pathology report from the surgery, radiation isn't warranted. And surgery alone is less likely to cause permanent problems because the tumor is smaller.

One thing to be aware of, and I'm not saying this to scare you but just so you know, there's about a 30% chance that even though you seem to be stage II now based on CT scans and whatever else they've done, they will actually find some cancer cells in your lymph nodes when they do the neck dissection. Of course if they do, that wpould indicate you should have radiation. If they don't, it's a sign you might not need it.

However, even if you have clean nodes (I did) there are other aspects of the pathology report that some doctors feel indicate radiation and chemo. These aspects are things a lot more reliable than your age in indicating a more aggressive form of cancer. One is how well differntiated the cancer cells are (with poorly differentiated indicating more risk), one is the thickness of the tumor (and I don't know how thick is an indication of more risk--just that my tumor was on the edge of being too thick for comfort), one is whether there is perineural ivolvement or whether the tumor is growing around a blood or lymph vessel.

I had enough of these risk factors that when I went for a second opinion at Dana Farber in Boston (the number 4 CCC in the country), I was told in strong terms that I needed to treat the cancer aggressively and have radiation as well as chemo (it is now standard in Europe for people with high risk stage II to have rad and chemo, based on some good solid research, though it is not standard here yet).

Before that second opinion, though, I also got an opinion from the rad oncology team at Roswell Park (also a top CCC though not as high in the rankings as Dana Farber) and they were close to evenly divided about whether or not I should have rad. So if you are getting mixed opinions--which isn't uncommon for Stage IIs, I would definitely try to get a second opinion and try to get it from the best experts you can find.

From the reading I've done, there's not good evidence that young people with oral cancer necessarilly have more aggressive cancers. However, I do think there's a good argument to be made for treating the cancer aggressively, if there's doubt, when you are young and healthy simply because you want to live a loing life and you are strong enough to recover from aggressive treatment.

Make no mistake--the treatment is rough, I'm 2 and 1/2 months past and I'm still feeling pretty bad--but I'm young enough (46) I want to live many years and this was my best bet.

People will be ehre to support you whatever decision you make. My personal bias is that you should choose an aggressive treatment that gives you the best chances of never having to deal with this disease again.

Nelie

Karyn, as my high school Geometry teacher used to say "Well, guys and gals, that's all there are to it!" Welcome to the world of Faith, Hope and Scratching your head for the right answer

heh. That's very well-put, Amy! And congrats to your husband for doing so well on getting back to eating--that was really quick--I'm jealous, actually, though my time will happen eventually.

Nelie

Hi --

Even if Barry had just had tonsillar and base-of-tongue tumor (no nodes affected) they still would have recommended chemoradiation as they try to avoid tongue surgeries at Hopkins -- that's what we were told, anyway. They certainly do pre-radiation surgery, however -- radical tonsillectomies, neck dissections -- while we were told at Sloan they don't do that now.

So as they say -- you pays your money and you gets your choice...

Gail

Gail, I'm curious, is it *all* tongue surgery Johns Hopkins avoids or just base of tongue or cases where some sort of flap reconstruction is needed? Is it related at all to stage? I can see not doing surgery when its already a pregiven conclusion that the person will need rad., but this isn't true for Stage IIs.

My understanding from my ENT, and the first rad oncologist I saw, is that if my cancer had been base of tongue, I might have had rad recommended to me as an alternative choice because of the risks associated with the surgery, but since it was on the upper tongue, fully visible, and not anything that would most likely require a graft, even though it involved removing about 1/3 of my upper tongue, that surgery was considered relatively low risk for lasting problems with speaking or eating and much less likely to produce lasting effects than rad, so it become the first choice. This makes sense to me. I mean, it's hard to imagine advocating the radiation, even tomo., would have less longlasting effects than the effects I had from the surgery which were almost totally nonexistent two months after surgery.

Nelie

Nelie,

I agree -- I think your diagnosis and mine were fairly similar in a lot of ways, and I know without any doubt I've had fewer long-term effects from the surgery than from radiation. While I lost a portion of my tongue, it wasn't so much that it seriously affected my eating or speech, and most of the people who have met me since I recovered don't have a clue, based on visual observation, that I ever had this type of surgery.

Cathy

Nelie and Cathy --

I tagree, I think the surgeon was referring primarily to base-of-tongue tumors -- which they are seeing quite a bit, not ones on anterior part of tongue. They don't like to do surgeries which will compromise swallowing or speech. If the surgery would not affect this and allow the person to avoid radiation, I suspect they would do it.

When we see the surgeon again (this will be at the end of Barry's treatment) I will ask him.

Gail