i just had 30 IMRT treatments and the side effects were not as bad as the doctor warned of. He said that had alot to do with the Imrt technology, really pinpoints the rad. don't know if this helps but it may not be as bad as 9 years ago.

Hi EBJ,
I grew up at a lake and at 17 starting started to work at the shore so I have spent my entire life in the water. This is the only surgery that has scared me. I was terrified of taking a shower for the first 8 weeks. I've over came that, but my surgeon has me scared stiff of the ocean. Granted NJ beaches are rough and uneven so I certainly can't get knocked off my feet. But he makes it sound like if I go under for a second I will drown. Like I would breathe in if I am under water? Think I will give it a try next time tide is out.

Really sorry to hear your husband has had this reoccurence and so many years later. I would have thought if it was a result of radiation it would have shown up sooner, but glad that they were able to remove it and he can still have radiation. One of my worst fears is cancer of the esaphagus. Thanks for the symptoms.

Hoping his treatment goes well without too many complications.

Take care,
Eileen

Hi EBJ,
My husband also appears to have another cancer caused from prior radiation. Nine years ago (age 34) he had six weeks of xrt rad for tonsillar non-hodgkin's lymphoma. Did great until this April when he was found to have Stage IV base of tongue/epiglottis SCC. The irony is that at the time he had the 1st rad he already had "odds" upwards of 90% cure with chemo and the rad was just really a little insurance. I try not to dwell on that though because we made the best decision we could at that time and we had to deal with what was at hand. I guess we don't really have the luxury of worrying about secondary cancers when we have one to cure now.It is a little scary though because now he has had rad twice to the same area. The docs do feel this cancer is most likely from the prior rad-never smoked and social alcohol. I wish you both well .

mghester, thanks for the positive info on IMRT. I think they want to prepare folks for the worst so they're relieved when it doesn't happen. Glad it went smoothly for you.

Eileen, I know the swim thing is a big taboo, due to the obvious stoma conflict, but but wading around in reasonably calm shallow water should be o.k. if you're cautious and you've always been around water. It's a personal choice.

As far as symptoms go, people know when things aren't right with their own bodies. They often don't pursue medical care out of fear. Once you've had any type of oral cancer, you still have to be vigilant. Stay well and thanks for your concern.

EBJ

Doreen, you're right we don't have the luxury at the time we get this news wether it's the first or second time. There is so much information, much of it conflicting. You wonder are the Drs. telling us what we want to hear or what we need to know? I think they fail sometimes with the statistics because we are all individuals and what may work for some may not for others. There are so many variables with these particular diseases. I do know that Drs. try the best they can to increase survival.

When you are the caregiver or the patient this disease becomes your primary job and hopefully, later a maintenance chore.

K.C. had his pet/ct scan yesterday and fortunately nothing has spread it's still a T2N0. He will start with 3-4wks IMRT with chemo (cisplatin 1x wk), and the Brachytherapy (the seed inserts?) not sure how many treatments directly to the tumor area last.

Bless you all

EBJ