I am struggling to understand how the RO determines the exact amount of radiation that each individual patient receives. My father currently has 14 more treatments to go and the RO told us today he is reducing the amount that he is giving to the non cancer side of his neck and the top of his lung area. We were told that he would receive a total of 66 cGy at 1.8 per day. I am just scared and worried is that enough and should he reduce the other areas. He has had 22 treatments so far. His neck and checks and upper chest are very badly burned at this point. The sides of his neck have certain cracks and were bleeding slightly yesterday. I don't want him to have more than he needs but I want it to be enough. Any insight anyone could provide about their own experience on others would be greatly appreciated.

It would be dangerous to speculate on cgys of radiaton and where they should be applied. This is highly individual, but based on a particular patients situation. You are askijng people here a question that no one can give you a definitive answer for, nor guide you in if this enough or not. There is also no correlation between tissue damage in the form of burns and what is actually happening with the malignant cells as a result of radiation. Radiation burns and other issues are not plesant, but you do not want to have him not complete hes prescribed course of treatmnet unless absolutely necessary.

Thank you Brian for your reply. I am curious to know what other's in this forum have received as total cgys. I am more worried about my Dad not receiving enough radiation. I am just trying to find at least ranges that are reasonable.

Radiation Oncologists are highly trained and skilled individuals and they take you (the patient) right up to the threshold of lifetime maximum burden. Don;t try to 2nd guess them, it will only cause you grief and stress.
Darrell

Brian
I have also read that this therapy is a "no pain, no gain" type of therapy. In otherwords the more your mouth and throat are on fire and the more everything taste like tinfoil the better? Any advice/

Darrell,
I would be less inclined to second guess the RO if my Dad was being treated at a major CCC and if he didn't have unknown primary. A large variance exist among RO's for treating unknown primary, even at the major CCC based upon the literature. I could not convince my Dad to even obtain a second opinion so I guess that is why I am more inclined to doubt the RO.

I would definately NOT be in the "no pain no gain" school of thought. Regardless of the disease and the types of treatment, proper pain management is essential to the patient's well being through the process. The doctors should be on top of this. You don't have to "tough it out" to get through treatments. I was in really bad pain for a few days, but my treamtnet staff saw that I had enough pain meds of differnet strengths to put everything from the daily pain to the peak pain under control, and in my posession for use as it was needed. Radiation does do significant damage as a by product of freeing a person of cancer, but you shouldn't have to endure unnecessary pain in the process. Unless something is going very wrong... second opinions in the middle of treatment are hard to get. Doctors themselves are not inclined to second guess a current doctor's midterm plan.

Hi Sue-
During Charlie's treatment-even the slightest movement of his neck would cause his skin to bleed. It looked like his whole neck was covered in thick scabs. And it would flake all over. He didnt want to go out of the house because he didnt want people to stare.
But it did get better! It started clearing up with one week left of treatment. Now two weeks after treatment- it is nice (new) skin. I know how scary it is to see, but our oncologist told us "If it is this bad on the outside-imagine what it is doing on the inside".
I remember thinking that it was too much, but I trusted the doctor and he madeit thru treatment!
If you have concerns-talk to the doctor- I'm sure they can calm any concerns you have.
Charlie also got thick cream to put on on the weekends only and cold compressess when it started to hurt. Ask the nurses or doctor when you go the next time. Anything to help him get thru treatment! Best of Luck for you and your father!

Sue, even RO docs in small towns have the necessary training to do their work. Try not to dwell on this aspect of his treatment. It is easy to get into a spiral of second guessing that is not productive. Hang in there and focus on the other aspects of getting through treatments.

Sue, I live in a small town with a small hospital and a new cancer treatment center. The chief RO in this little town is straight from MD Anderson and the second in command has similarly impressive credentials. It might be the climate, but is most likely the world class windsurfing that is the draw, but if they had been here when I needed treatment, I would not have driven to the Big City. Mark is right that small town docs can know their stuff.

As far as pain control, speak right up. It is your dad's right to be given drugs to control the pain. Even severe treatment can be accomplished with little pain, and I can testify to that.

I wish you and your dad the best possible remaining treatment and recovery.

Thank you Mark Joanna, Charlie and Delia! Treating this disease is just so hard and confusing. One of the most difficult things for me has been there is no clear cut answer when you ask what is the appropriate treatment. Guidelines exist but there are as they say just guidelines. My Dad seems to be doing a little better this weekend. Only 11 more treatments and 2 chemo so at least we are close. The RO and his Oncologist are currently managing the pain it seems but as you all know the pain meds cause additional side effects that you have to manage on top of everything else. Oddly enough, I have to say one of the most frustrating things for my Dad has been everyone from nurses to the Rad tech to every single doctor we have seen ask him "Are you a smoker?" My Dad can't hardly take that question anymore - as he has never smoked in his life. I feel like getting him a hat that he can wear all the time that says "I am not a smoker".
Thanks again

Sue --

I was at a Continuing Education Conference for Head and Neck Cancer at Johns Hopkins last Friday and several of the doctors (surgeons, medical oncologists) reported that over 50% of their NEW patients are non-smokers. There is a changing demographic for HNC, a talk by Dr. Maura Gillison on her research outlined that quite clearly. Patients are younger, often non-smokers, and more oropharyngeal cancers than nasopharyngeal. A fair number of unknown primaries, too.

Let us know how the Erbitux works, it is only recently been used outside of the clinical trial setting.

Best of luck to you and your Dad, be strong, it is a long road but there is hope at the end...

Gail

Thank you Gail for the information. I wish they knew why but I know everyone ask that question when faced with a cancer diagnosis. I will let you know about the Erbitux. The side effects he has experienced from Erbitux are alot less than those taking Cisplatin or 5-FU so far and after tomorrow he only has one more chemo treatment to go. I hesitate to say these yet but so far he has not experience any nausea and is taking an amifostine shot everyday as well. The radiation side effects however have been pretty bad. Today they showed us how to irrigate the open wounds on his neck several times a day to try and prevent infection. Only 10 more to go.
Thanks again Gail - I will pass along the information to the rest of the family.

Sue, I know exactly how you and your dad feel about that "Are you a smoker" question. I felt just like you - wanted to make a sign for my husband that said "NON-SMOKER". Often times, the quesiton was asked with a bit of an attitude. I really think that it makes people feel better to see somebody going through the horrific experience and to be able to say to themselves, "Well, that won't be me because I don't engage in those risky behaviors."

Best to you and your dad.
Anita

I took my son to an oral surgeon yesterday to discuss wisdom teeth extraction. I asked the Dr. if he screens for oral cancer and if he ever diagnosed any. ( Yes and yes, according to him.) When I told him that I am an oral cancer survivor, his first question was "Were you a smoker?" I don't really mind the question at this point...I think it is a pretty natural response.

However,imagine how AIDS patients must feel. I wonder what questions they are asked?

Danny G.