My father was 7 years cancer free this past January and then in September an ulcerated lesion appeared on his tongue. So here we are today 3 weeks post surgery where they performed a hemiglossectomy and reconstruction of his tongue from his left thigh. They also did intraoperative radiation during the 10 plus hour surgery. He is being treated at Ohio State a comprehensive cancer center; however they are now talking about 5 plus weeks of more radiation and chemo.
The tumor was over 4 cm and because of his previous left neck dissection they had to attached to the flap blood supply to the right side of hi throat.
The recovery so far has been really rough. Just yesterday he received a cap for his trach so he could try to speak. Swelling is still pretty bad but you can manage to understand a few words if you watch his lips. The fact that he had previous radiation for a unknown primary seven years ago has made his recovery much more challenge and the intraoperative radiation compounded the swelling after surgery so much so that my father tells us now that he thought he was going to die the first two days after surgery.
Our biggest concern now is the additional radiation. My father had in 2006 the old fashion 2D external beam radiation so not much if any of the tissue was protected.
We are worried with additional radiation he will be on a PEG tube the rest of his life as well as possibly a trache. Let alone what it might do to his spinal cord.
My father before this was extremely active, farming 12-14 hous a day this past summer.
He is in excellent health and had the best vitals on the floor when he was in the hospital.
Anybody have a similar experience? Just don't know what the right decision is.
We meet with the radiation oncologist next Tuesday to hear the exact plan and get fitted for that dreaded mask.

I had radiation three times, going for my fourth tomorrow with intraoperative radiation also, which I had last year. Yes, you can have more radiation with the flap, and is like having new unradiated tissue, plus other dose painting techniques with IMRT. Also IORT is very specific with protecting vital areas with lead shied, being moved out of the radiated field. I can't guarantee anything, and maybe discuss further with your doctor. Good luck.

Thanks Paul for your quick reply. I have been following your case and know you have a lot going on in your world. I wish you the best of luck in your fight with this beast. I guess I don't understand nor does my family why they would radiate the new flap a perfectly healthy good piece of tissue?

Many patients with recurrences years after their first round have undergone additional courses of radiation.

If he may end up with a trach, ask specifically for a possey muir valve trach. it will enable him to speak while having it.

Dont rule out a second opinion at a major ccc.

Best wishes with everything!

For any microscope cancer that was left behind, which also can go to the flap, flaps also protects vital structures, areas radiated before, so can take the toxicity. The reirridation may be 45Gy, not really sure in this case, but is not usually like 70Gy. IORT is equivalent to 3-4 times the amount in IMRT, and dosages are between 10-20Gy, but is really triple that. Good luck.

Christine,
We are currently being seen at a CCC. Are you of the opinion that it may be a good ideal to visit a second CCC to see if the would follow the same protocol?
Also thanks for the advice on the trache.
Kim

Hi there. I think by giving him radiation the second time around they are trying to make sure that it is gone. The new tissue is clean but that doesn't mean there isn't any microscopic cancer still hanging around. Paul is right radiation is very focused. Might he end up on a peg for life, there are a few people here who are, or it may simply become more difficult for him to eat, or if he continues to eat and drink even small amounts and goes for therapy after he may be fine - it really depends on the individual. I think at this point it is a quality of life issue - you say he is healthy and in good shape? Then - while not being able to take foods by mouth is completely sucky - it might be a good trade off if it means he can spend the next 20-30 years with his family.
hugs

There have been members who have gone to several CCCs seeking opinions. Davidcpa for example went for 5 consults (maybe more) prior to selecting his treatment center. Its never a bad idea to get top doctors input on the case and then making an informed decision.

Cheryl
Thanks for the informative post. I surely hope we get to spend more time with him.
The adjustment as a family to eating in front of him is very hard but of course everything about this journey is difficult.
I know everyone faces the difficulty of what is the best road to take for treatment. We all just want exact concrete answers and unfortunately at this time with this cancer(like many there are none).
Kim

That's the worst part about cancer - the uncertainty - but if we look at the big picture, it's really no different from anything else in life. Most of the time we live in an oblivious facade and truly never realize how truly fragile life is until we're closely touched by death. There are people out there who are unable to eat for many reasons, (we have a child at one of our schools who Is severely deformed, there is something the matter with her jaw, she has a permanent trache and is fed by a peg and has never had cancer. ) life is like that - random - walking happily down the street one day, mowed down by a truck the next. Enjoy everything, even the dark moments, because the alternative is worse. hugs.