Hi All-
I hope I'm posting in the correct section. Four weeks ago I had surgery to remove a recurring cancer on the left side of my tongue. I had a hemiglossectomg but it was more than half of my tongue. I'm starting to talk and people close to me can understand me the best. Eating is impossible at this point and I'm relying on the PEG tube.

I'm posting because I'm being suggested to have chemo with radiation. I know that this is usually standard after major surgery but this would be my second time receiving radiation to my oral cavity. I'm very concerned. My margins came back negative but because of perineural invasion in the past and present tumor and the pathology slides showed breakage of cell clusters from the main tumor they recommend another round of radiation but with chemo to sensitize the cells.

I'm torn because there is a chance I have no cancer and will go through treatment for no reason and will have to live with the long term side effects. Even with treatment there is a chance it could come back.If I don't do treatment and there is cancer there then it will be too late to do further treatment once it becomes visible on a scan. The question is do I toss the coin and take the chance? Quality vs quantity of life...

Very confused

That certainly is a very difficult decision you have to make. Im very sorry but no one here is really qualified to advise you what path to take. We are fellow OC patients/survivors and caregivers without the benefit of years of medical school and hands on practice. After being on this site for years, Ive learned quite alot about OC but still not enough to give my 2 cents. If I were in your shoes, I would probably seek out a second opinion at a CCC before committing to a treatment plan. But time is important too, I wouldnt advise waiting more than 2 weeks for the second opinion. You dont want the risk the chance of the cancer growing and becoming more difficult to treat.
Your situation isnt easy at all. I wish I could help you more with everything you are facing.



PS... Dont worry too much about posting in the right place. I can always move your post if needed.

ChristineB-
Thank you. I did get a second opinion at the top cancer in NYC. I guess I just didn't like their brutally honest suggestions. Especially when they made me wait 4 hours for each appointment, looked over my records within 20 minutes and then recommended their most aggressive treatment that will leave me with severe side effects that I don't know if I could cope with.

Would you be able to direct me to forums with people who had radiation/chemo for a second time in the same location. Specifically the oral cavity. I would greatly appreciate it.

Thank You

Hello, Keepfaith. I haven't had radiation twice but I've had recurrent tongue and oral cancers like you. Not so close together but three incidents all up. Your 2014 must have been very hard.

Because I haven't suffered too much from RT, I don't see it as a total life-changer. I'm certainly not qualified to advise you but a part of me wants you to have the treatment because it could save you from recurrences. If two hospitals have advised it ...?

What were the severe side effects they mentioned? Salivary glands, taste buds, jaw? I know people on this site have had RT twice but can't remember them describing the side effects.

I think what I would do is go back to the original doctor and thrash the issue out with him/her once again. And best wishes.

We have some members who have gone thru rads more than once. I even know of a few who did rads 3 times. Of course its very rare to find OC survivors who have been thru rads more than once. There isnt a special section these members stick to, they are here but they dont always check in on a regular basis. Hopefully one or more will reply to your post.

Wishing you all the very best with everything.

I'm sorry to hear about the cancer recurrences. This is so difficult; we all want to kill it dead forever the first time; having it return must be devastating.

Perfectly understandable to be confused. Given the facts. This is the third time you are dealing with cancer so you have more experience and knowledge than many of us here. You have received multiple opinions from top cancer facilities and if there is agreement with the recommended treatment plan that that is pretty much the way forward if you choose treatment.

I agree with others that only you can decide the path forward. We have zero personal understanding how life is for you on a daily basis and all the other facets of your life.

There are others here who have undergone multiple treatments who are active on the boards. Hopefully a few will offer their personal insights.

Keepfaith,

I'm very sorry to hear you are facing some tough decisions. I've been there so I know how you are feeling.

Months after my first surgery in 2005, I found out the hospital pathologist botched my biopsy and I had cancer at the margins. I went to 3 different hospitals (3 ENTs, 2 ROs) and had multiple tests to determine what to do. The recommendations varied greatly, and after many sleepless nights I opted for RT.

In January 2010 I found out the cancer was back (same location). Again, I went for multiple opinions, and got vastly different treatment recommendations which varied from very aggressive surgery to relatively "minor" surgery. Radiation was not recommended since i did and still have a host of problems because of RT. This time I went to Johns Hopkins in Baltimore, which is one of the best in the US for H&N cancer. Best move I made. The doctor I saw was great, spent nearly an hour discussing my options with my husband and me, and most importantly I felt he was the right surgeon for me. His treatment made the most sense for me even though it was the least aggressive. So I had the surgery (clean margins) in April 2010. A year later I had another surgery due to dysplasia, but I've been in the NED category since.

Perhaps seek an additional opinion at Hopkins or MD Anderson (Texas) - both are rated as in the top 5 in the USA and I believe both offer a remote review of your case. In my situation, I was hoping there was a consensus on treatment recommendations by seeking multiple opinions, but there wasn't and ultimately I had to choose which treatment "felt right" and pray I made the right decision!

Wishing you the best!

Donfoo-
Thank you for your reply. I hear what you are saying about listening to all the different opinions my doctors are giving me. However, it is interesting how the oncologist have a different view from my surgeons. Did you ever meet an oncologist that didn't suggest RT?

yes... they do not recommend it if they feel you won't benefit from it.

my opinion for what it's worth.
You have a long history with this cancer - it is clearly aggressive and pervasive. Cancer can hide in the nodes. When its there it can sit and slowly seed to other areas. cancer is only picked up on a scan once it reaches a certain size. therefore it could be there still - on a microscopic level. Do you really want to hope it's gone? or do your best to ensure you've given yourself the best chance of survival?

having rads and chemo cuts the potential for recurrence in half (so if it's 50/50 then its now 75/25 - that's a big difference)- you've already had numerous surgeries to remove this - playing it safe hasn't paid off - there is no reason to believe that it will this time either.

Do the rads. do the chemo if they suggest it.

this cancer can be aggressive. Do all you can to kill it now.

hugs.