I recently underwent a partial glossectomy with a modified radical neck dissection, mainly because of the perception that the tumor was between T2 and T3. The pathology came back staged as T2N0M0 with margins negative by at lease 5 mm. I understand the need to be aggressive, which we already have been, but now they are recommending post-operative radiation, based on the depth, perineural and angiolymphatic invasion. I would generally not deny treatment options, but I'm concerned about the complications. I do have a PEG, which I can probably keep through the radiation treatments. But is this overkill?

I'll tell you the truth. Right now I am putting all my faith in God and my medical team at Johns Hopkins--I follow all of their recommendations, as I figure it is always better to be safe than sorry.

I am not sure of the type you have but I just had to make the same decision. I was stage 1 but because of perineural invasion I was told I needed radiation. Apparently cancer does not move cell to cell on nerve tissue but rather hops or jumps. If one cell jumped beyond the clear margin that is all it would take. I called everyone I could think of that knew anything about this and I was told by Everyone that I should have the radiation. I now fear the side effects of the radiation as much or more than the cancer. It was probably the hardest decision I have ever had to make.

Whatever your decision is, make sure you are at peace with it, you don't want the "what if's" to steal your joy.

Good luck!

Statistically, we see more recurrences in surgical only primary solutions than we do in a multidisciplinary treatment approach. Recurrences can be harder to deal with than the original disease.

No one can make this decision for you, but I do not think it is something you want to deal with again, nor have what your treatment team thinks is incomplete primary treatment. You have a team with lots of experience. My personal choice would be to trust their experience based decisions. At the end of the day it's your life, and even they will not force you into things.

In my son's case, the treatment team left it up to him when it came to the radiation and I am so glad he chose to follow their recommendation even though I could see how difficult the radiation recovery was for him. He made it through and is just fine now. I am only the caregiver but as his mother I will be forever greatful for the aggressive action taken in treating my son. As Susan says, "better safe than sorry".

Just my opinion, but I think the "complications" of the cancer coming back if you do not get radiation will make whatever radiation effects you are currently worried about seem like minor annoyances. My medical team was adamant that perineural involvement meant it was just a matter of time before the cancer came back a third time if I did not have even more radiation. I did not make this decision lightly as I already had the "maximum" radiation and due to the Erbitux, horrendous side effects. But I believe I would be in a hospice now if I had not gotten the follow up radiation.
If you disregard your doctor's advice and the cancer does come back, you will regret it forever.
Charm

Thanks for the quick responses. Agree with all that has been said. Guess on some level was hoping to avoid radiation complications, but I guess it is what it is. Better to take care of the primary as thorough as possible. Thanks.

Just wanted to let you know my sister is also facing this decision and is moving on with the radiation treatment with much support(and being pushed) of her family. I am sure she will be kicking and screaming the whole way. She to is very afraid of the possible side effects and changes her mind everyday, but tomorrow she is getting fit for her mask. Her tumor was about the same size as yours and the dr's feel that it is needed. She might as well get it all done at once and not be a happy camper instead of healing and then not being a happy camper Again! I wish you luck on your treatment!!

One very important thing to remember. Everyone is different. Although someone may have something very similar, they could sail right thru radiation while another person may stumble. Ive seen some lucky individuals go right thru treatment without losing weight or complaining of anything more than a sore throat. Think positive and be prepared for the long fight but take it one day at a time. Best of luck with your decisions.