I just joined this forum today so I'll give a brief "history." Had surgery 7 weeks ago to remove 3-4cm tumor from lower right side of tongue and floor of mouth. Surgery went well - no spread to lymph nodes, all margins clear. I am facing IMRT - should have started last week - but am struggling with potential long term side effects vs benefit of the radiation. Most concerned about the dry mouth and loss of taste buds. I had (1 cm) tumor removed 14 years ago - no radiation recommended at that time as it was 1st occurence. Have not smoked in 30 years so 1st occurence was 15 years after I quit. Any thoughts/comments on radiation - I need to make a decision and would appreciate input from folks who have been through this and can share experiences. Thank you.
Ron

I know the position you're in. I had a similar size and location tumor removed in Oct 2003. Good news - no lymph nodes involved. Doctor felt confident that he got all the cancer. So, the decision to proceed or not with radiation was mine. I sought 2 more opinions (including tumor boards there really were more than 3 medical voices involved). No clear cut decision.

My cancer was stage T 2-3. The concern about loss of saliva and potential other effects was there. But I went with what I felt was the more conservative approach - try killing off any remaining, microscopic cancer cells. I wanted to be around long enough for those other problems to develop.

I have 2 young kids so I want to hang around for a while. Quality of life and potential complications down the road were secondary.

My worry about radiation was that since it can really only be used once on an area was I using a weapon that maybe should be saved for later, in the event of a reccurence

will add more thoughts later, I need to go.
michelle

Back again- part 2:

How much of your tongue was removed? I had half removed and taste/eating/speech is a problem for me, but I think that has mainly been from the surgery. And as said, for me that is secondary to just being alive.

I have had some infection and radionucrosis at the front of my jaw - they sliced through my lower jaw to get to the floor of the mouth. Bone decay and gum tissue lose are a side effect of radiation - I did go ahead with IMRT radiation. So, I am having some damage effects from the radiation. Will have to see what the future holds.

In weighing my decision whether to have radiation or not, I thought about how I might feel if I later had a reccurrence. Would I later wish that I had done it? So, I thought I'd go ahead and fight it aggressively.

Will never know if it was "the" "right" decision but I did feel comfortable with my decision (and still do). My husband and I discussed it a lot and were pleased to get the 2nd and 3rd opinions even if the answers were not clear cut.

Best of luck to you, and I don't mind being a sounding board as you think things over.

p.s. Are you being treated by a comprenhensive cancer center? In the iffy and aggressive cases it is reassuring to know that you are dealing with specialized centers and doctors who are familiar with a lot of Head and Neck cancers.

Oh, and by the way, I never smoked, drink only socially or moderately, and was 41 at the time of diagnosis, so much for thinking cigarettes are a factor in my case.
michelle

Hi Ronald,
I had "regular" radiation to take care of any clean up needed for a stage lV tumor in my jaw. I am 19 months out from the end of radiation treatment and my saliva output is at least half, if not more, then what I had before. My tastebuds are fine, I taste my food just fine. Some foods seem to have a different texture then I remember but that is my normal now so I don't notice it any longer.
Knowing what I know now, I would still opt for radiation without even pausing. I believe it's part of why I'm still here today.
Minnie

Hi Ron,
You face a challenging decision. I would urge you to get second (and if necessary, third) opinion from comprehensive cancer centers.

Also, if you do a search on this forum for occult or micro metastis, you will find a number of posts about the possibility of undetected cancer cells that have escaped the surgery but do not show up with any imaging technology. If I recall accurately what Brian has said, I think that some 25-30% of oral cancers can metastize this way.

For what it's worth, and this information may not be transferrable, I had a T1 tumor and while discussing the possibilities of radiation therapy with my ENT surgeon, he said that one always radiates a T2 tumor.

Somewhere on the forum, somebody posted the url of a site that described the recommended treatment protocols for each stage of oral cancer. I was unable to find it to include in this post but hopefully someone else on the board knows where it is and can re-post.

Best wishes and good luck with your decision and treatment. - Sheldon

Ron,

Welcome to this site -- I'm glad you found it, and also glad you've made it 14 years since your initial diagnosis and treatment.

I would also emphasize that it's very important to get an opinion from a head and neck team at a comprehensive cancer center, if you haven't already. When I was diagnosed almost 16 years ago (at age 39), I was a lifetime nonsmoker and the surgery results indicated that the doctors had gotten all of the cancer with good margins (no lymph node involvement). Notwithstanding that, the tumor board at my cancer center argued strenuously for radiation, and I took their advice -- reluctantly. At that time, IMRT wasn't even an option, so I had general field radiation. While it was rough going for a number of months, the long-term effects have been relatively minor and manageable. The taste buds came back within a few months and, while I still have some dry mouth issues, I've been able to deal with them in part by medication and mouthwashes like Biotene.

Unfortunately, there are quite a few people on this site who can tell you that they held off on radiation because of misgivings about the side effects, or because a doctor told them they could "save it for later", but they ended up regretting that decision. Please be sure you are getting the best advice you can from experienced head and neck professionals, and follow their recommendations.

Cathy

Ron,

I can't tell you what to do. I know I would have started the radiation. As for the side effects, they vary. My sense of taste returned quickly and I have some saliva production. I do not need to have a water bottle with me at all times, this is with field radiation. Sometimes people on here speak in absolutes which, unfortunately, are not always correct.

Glenn

Hey Ron,
Welcome to the site! My husband had a bit more than one third of his tongue removed and modified neck dissections on both sides. Unfortunately, we were not at a comprehensive cancer center (hadn't found this site yet) and the oral surgeon said since there were clear margins and no lymph node involvement that Dan did not need radiation. Exactly four months later Dan had a swollen gland which turned out to be a very aggressive neck tumor that was attached to his carotid and jugular. Needless to say we wish we would have been more informed at the time of surgery.
God bless and take care,
Debbie

Hi Ron,

Welcome to the neighborhood. It was good to hear you have gone so long without cancer issues looming. I am sorry you have to deal with this again, though. If your doctors are suggesting radiation, is there anything that would cause you to believe you should not have it? The reason for the treatment is to rid you of cancer. Without it, you probably would be overtaken by the disease. Is this worth a gamble?

The radiation is tough but many of us have traveled the road ahead of you. It is doable and certainly worth it in the long run.

Ed

I had IMRT 2 years ago and today my taste buds are completely normal and my salivary function is about 80% of what it used to be. I lost the parotid on the same side as the tumor. I can spit, lick stamps and eat bagels with nothing to drink.

IMRT is actually your best shot at not having dry mouth issues.

Like Ed said it's quite doable although a bit unpleasant (understated)in the short term.

To All:

First, my thanks to all of you for taking the time to respond. I never expected so many thoughtful comments and so quickly. To address some of the questions. Yes, I am being treated at a comprehensive cancer center - ranked in the top 12 in the country. I have just began to seek other opinions - general oncological consensus is to have the IMRT. Monday 1/31 will be 8 weeks from surgery - I'm feeling some pressure to make the decision soon. Michelle - to address your question - almost half of the right side of my tongue was removed - and part of the floor of my mouth. They did what is called a free flap - graphing skin from my forearm to the tongue including a vein. They had to do left neck dissection to route blood supply to free flap on right side. My lymph nodes on right side were removed 14 years ago at first surgery. I am very fortunate, in that my speech is relatively clear - I am in speech therapy and for those who know me they can clearly detect a difference - s's and ch's are the toughest. Some dry mouth but not unbearable.
It is surprising that so many who do not smoke or have never smoked end up with oral cancer.
Uptown - to answer your question about my reasons for not having it - mostly my concern on side effects - fearing more loss than what has occurred already. I love eating and my profession requires speaking clearly. I've hit a crossroads of choosing between a medical improvement and quality in life. It was encouraging to hear positive comments about the taste buds and salivary glands. It has been very helpful to hear the comments from all of you and your real life experiences.
Has anyone had any experience with amifostine?
Have any of you heard of proton therapy? I understand it's relatively new - only 3 or 4 centers in the U.S.
Again, Thanks to all of you for taking the time. I wish everyone the best and my wife and I will keep you in our prayers.
Ron

Hi Ron,

I had field radiation (37 total) and had injection of amifostine prior to each treatment. Although the shots were unpleasant, they became part of the routine. I was fortunate in that I didn't have any real side effects which others did. I had a total glossectomy and dissection to both sides of my neck prior to radiation and chemo treatments. I feel fortunate in that I do have some saliva and I strongly believe it's from the injections. That's not to say that I don't have my eating issues - there are plenty but mainly the inability to eat breads/bagels/pretzels/etc. - anything "dry" is tough. I can do it but found it wasn't worth the effort. Other than those types of foods I'm able (with the aid of A LOT of water) to eat anything else. Good luck in your treatments should you definitely decide to go the IMRT route. As many have said and as I'm saying now, many have been down this rocky road and we're here to tell about it!!!

Hugs, Nancy

Do a search in this topic under PBT

Ron, welcome to the site. Sorry you had to find us. I had tonsil cancer which is not the same as yours, but the treatments are similar so I think I can comment and be relevant to your concerns. I had chemo (ciplatin) and rad prior to surgery to try and shrink the tumor in my lymph node. It had traveled from the tonsil to the node. After 6 weeks, I had the surgery to remove the lymph nodes and the post-surgical biopsy showed all of the cancer had been killed by the rad/chemo. The chemo also went throughout my body destroying any small bits of cancer that was trying to find a new home, I hope. So far, so good. The side effects of the chemo/rad/surgery has not been too bad. My taste is very poor, my dry mouth requires an H2O bottle, and my shoulder has some limitations. But I would do it again in a heart beat to insure the cancer was destroyed. This disease is very unforgiving and doing everything possible to defeat it is, in my opinion, the only way to go. As my surgeon said, if it was him, he would learn to operate left handed rather than not do everything he could to make sure the cancer was gone. Will pray for guidance to the right decision.

Thanks - Nancy, Gary, and Kirk for the feedback.
Will keep you posted on my decision and progress.
Ron

Ron, just one more story. I had IMRT and chemo. I lost my taste, got it back just like it was before. I have probably 90% of pre-tx saliva and have no problem eating pretzels and the like, and do not carry water with me. IMRT allows the computer to be programmed to avoid the parotid glands in many cases. I was burned, got tired, and had the gunky, wallpaper paste saliva for a couple of weeks, but found it all very tolerable and a pretty small price to pay for being very well and happy and active now, thoroughly back in the middle of what I call Real Life. I have absolutely no regrets about choosing this mode of treatment and although I hope never to have to revisit that part of my life, would make the same choice in New York minute. E-mail me if you have specific treatment questions, and I will be happy to give you full details.

Ron,

I had the amifostine (Ethyol) and made it through about half of the radiation before I developed an allergic reaction. It was not pretty but I am glad that I could tolerate as much as I did. I had field radation and am now eating everything (in sight, unfortunately) and try to eat an entire meal without water. I even started drinking coffee again and even though it tends to dry my mouth out, I love the taste. Everything tastes different at different times and I have learned, for example, to not eat anything sweet before my coffee if I want to enjoy the flavor more. I eat bagels, or any type of bread for that matter and I think I struggle because I have no back teeth more than anything. It is hard to chew the stuff up completely without the chompers. I eat spicy foods, Thai peppers even. I was going over to a Thai friend's house regularly for meals and I finally cut it back to less frequent because they just load up stuff with fire. I pickled some Jalapenos and I don't know if it was all the rain last season but they are much too hot for me and when I bit into one I had to reach for the miracle mouthwash to numb my mouth !

I fully understand your treatment versus quality of life issues. I would have an easier decision because as long as I can do anything about it, I want to spend as much time with my wife and kids as I am allowed in this life. I hope everything works out for you just as you expect it.

Ed