Hi, I am a stage 4 cancer survivor since 2000, 13 surgeries to rebuilt my mouth and face.This year I had a growth on my tongue which was cancer, surgery removed it, it was very small.Three months later I had a second one.I was in front of a tumor board and in the operating room two days later. All margins clean on both.My Doctor keeps saying 3 different tumors not connected. He is puzzled, says my case is odd.I have been clean for 6 months. I hate to go back to this game of worry again. I am tired and numb. I think he is thinking I am inclined to get tumors and can see a future of them.??? I was clean 8 1/2 years I see my Ent because of a metal bar that replaced my jaw bone that tends to get a infection in it. I was in for this when he spotted the growth. I knew there was something there, but the second on I would have never seen. Do not hesitate to see a Doctor for anything small and keep regular check ups with ENT. Anyone out there that has had 3 different tumors?

I have not had 3, but I had two. The ENT swears that my first tumor on the floor of my mouth and this last tumor in my tongue were two separate tumors. The last one really took on a life of it's own after the biopsy (June) and was over 4 cm by the time we performed surgery in Sept. We tried radiation and it just continued to grow and bleed. I would wake up with blood clots in my mouth that were huge. Sad thing is we might have found it earlier, but the ENT did not think that we should biopsy one spot and that it was just a place that my partial was rubbing. My partial got so uncomfortable that I quit wearing it and now I know that can be a sign. More Might ofs.

I can surely understand after all that you have been through with that many surgeries that this must be really frustrating for you. Just keep seeing the ENT for regular check ups and as you say don't ignore anything or feel silly for asking. You are proof that it is better to ask than ignore it and insist on a biopsy if you want one.

Patty

Hi gnelson - Don't know if my husband's case will shed any light on your question, but he has also had several "lesions" removed surgically over the past 7 years. He JUST left his oncologist's a few minutes ago (regular check-up), called to say the doctor said his mouth looks better than he's seen it in a long time, so we are hoping that that news will continue. He was also told at Shands in Gainesville the lesions were probably not related to each other - all small and well differentiated, clean margins, so all he ever had was surgical removal, no rads or chemo. Because of the recurrences, we thought too, he was "prone" or inclined to get these SCCs. His ENT at Shands is also puzzled by my husband's case, and is bound and determined to find some reasoning or at least, a way to stop the SCC lesions. He never smoked (ever) or drank much, plus negative for HPV, but he does have some lichen planus and leukoplakia in his mouth. He recently had laser treatment in his oral cavity to rid his mouth of a lot of the lichen planus, etc. and that seems to have healed nicely. If you have any questions, please feel free to email us!
Warmly, JaneP

gnelson,

You might want to change your Signature Line?

I had three different tumor sites, first was external on side of tongue, second was internal at tip of tongue and third was external on BOT.

Gnelson:

In my original diagnosis there were 2 spots. The first one I noticed was inside my L cheek. The second spot which appeared on the roof of my mouth behind my top L molar. These were 2 completely seperate and distinct cancer locations at the same time. One was well-differentiated and the other was moderately differentiated. Guess anything is possible.

This is great to know I am not alone in this problem! I noticed one of you said no radiation or chemo, how about the rest of you? I ask this because my Dr. said one more and radiation. I am not to eager for that. I have a mess in my mouth you would not believe. My jaw is my shoulder, supported by a metal jaw bone. lineing of mouth my arm, so really a thin layer on total bottom of mouth. Now my tongue has scar tissue all over it. I eat very well even for all that but I am afraid of problems from radiation that this thin held together mouth cannot stand. I am prone to infections also. Any one got advice there? Did the rest of you have radiation or chemo for your problem?

Hi again, gnelson -
If you read each person's "signature" (on the bottom of each individual's post), you will read that all have had rads and chemo (for example, Christine's "2x cispltn & 35 tx") except for my husband. So, yes, the rest did have full treatment of rads and chemo, who answered your post. Keep us updated and best of everything to you! Warmly, JaneP

gnelson.

Right now radiation is the only effective approved method to kill to this this cancer. Surgery removes only the cancer that is cut out and most of the chemos used weaken the cells to allow the radiation to effectively better kill them. For instance I was told that adding Cisplatin to my Tx would enhance the rad's kill rate by 20 to 30% so I decided to do it. Depending on the Stage and the doctors' own opinion this cancer is usually treated by surgery alone or surgery and concurrent chemo/rad or concurrent chemo/rad.

Hi, Not really what I wanted to hear.I was hopeing someone would say keep having them removed but no rads. I can dream can't I ?Last tumor board had a Radiation Dr. and a specialist in oral cancer chemo, I guess i was being set up for the future.Patrick Swayzee said its about time they find a better way to treat cancer patients than burning them and pumping poison in them, my thought exactly.

Take care of your business first and then worry about future Tx plans.

Unfortunately, sometimes we dont always get the advice we want to hear. Surgeons cut, so thats how they deal with things. Radiation and chemo isnt fun to go thru but it can be done. It gets pretty brutal towards the end and for a few weeks after. There can be logn lasting and some permanent after effects. maybe think of it this way, if it works and rids you of cancer then its necessary.