Radiation or not?

Skiffin16 said:

Again...

I have no problem what so ever with your personal approach.. And I definitely agree that one knows their body better than anyone. Not so much that I'm saying I know what is better for myself in terms of treatment for cancer than those trained professionally and with experience.

I wouldn't consider (myself) a trial as a first line treatment when there are proven ones out there.

With your particular scenario, a lesser approach may be warranted having other things going on with your immune system. You are a little different than the majority of survivors here in that respect. As a whole, not everyone has something going on, and for the most part one size actually does come pretty close to fitting all... Each of us have some form of either surgery, chemo or radiation, or some variant of a combination of those. 

That chemo is usuallu or a high percentage also of Cisplatin, Taxatere, 5FU, Carboplatin, a few others and as you said Erbitux and if radiation most have had IMRT, but with current trends and technolgy other more precise and potentially less damaging forms of radiation are now being used.

But that is what makes us all different and agree that one size does not fit all.

Best of luck to you, and for a successful treatment and long life ahead of you.

John

Went to meet medicl oncol. today.  He was low key and I liked him.  He wanted to get to know me and what had happened.  He only sees maybe one Head and neck Cancer patient a month and has not seen many with HPV+ but it is not a big city or a place with a teaching hospital so most are generalists here.  Anyway he is recommending so far either the Erbitux or Cisplatin (a lower dose) weekly. He does not believe I need any other forms of chemo and stated he would not give 5FU to me as it creates terrible mucous in the throat and I will already have enough of that to deal with).  Have to now meet with radiation oncol Monday and see what she says.  

Still looking into MDAndersonCaCenter and the proton radiation therapy as well.  They did their first head and neck cancer pt. with tongue base tumor in 2011 and he had no taste bud problems, saliva problems and no feeding tube.  For some odd reason , that is sounding really good to me right about now.  I think there are only about 12-15 proton therapy facilities in the US as they have to be free standing and are fairly new technology.  Do now know if anyone on this site has had it done. 

Glad you survived all the treatments you had and came out fine.

PJ

Bart T said:

YOUR MOST DIFFICULT DECISION EVER

Without a doubt the most difficult decision I ever made had to do with my post-surgery treatment. Our cancers and treatment seem very similar. Mine was along one side of the mid tongue area. I had a hemi-glossectomy and neck dissection on one side with 41 lymph nodes removed. Post-surgically, everything looked clear, and my surgeon basically felt I could go either way on the radiation issue. He felt I had fairly good odds without the radiation, but that the radiation would give me even better odds. 

I opted for the radiation. I had the surgery early in May 2012, started the radiation mid-June 2012, and finished the radiation 7/30/12. Prior to the radiation I was just about fully recovered from the surgery when I started the radiation. I went through the radiation, and if it was simply a matter of enduring the radiation followed by a modest recovery period, I say it was a no brainer to have the radiation; but the effects are much more substantial than the period of treatment. 

Obviously, I’m alive to **** about how I feel, and many would consider that a victory. Compared to some on this board, my experience with radiation was a walk in the park. I never needed a feeding tube, never had to be hospitalized, never got all messed up with pain killers, etc. A little over a year out from radiation, everything is all clear. I can honestly tell people that from my neck down, everything is as good as it used to be, but realize that is a bit like telling Mrs. Lincoln “other than that one incident, it was an excellent play.”

 My quality of life has deteriorated substantially. Some would say that in the scheme of things, my ongoing complaints are trivial, and they might not be wrong, but they are my complaints, and it’s my life, and I’m the only one who could decide if the things that bother me are significant enough to detract from the quality of my life. Just last week, I had one of my follow-up visits, and the doctor felt that everything continues to look good, but he also said that most of the improvement takes place over the first year, and I could expect little or no additional improvement with regard to my current complaints.

 I’m sorry that I’m not a cheerleader for radiation and aggressive treatment. I’m not certain what decision I’d make today, but I would have changed two things about my decision process. First, I would have had a consultation with a cancer specialist who was not a radiation specialist. I do not doubt the integrity or qualifications of my radiation doctor, but if you want an unbiased opinion if you need a haircut, don’t ask a barber.

 The other thing I would have done, is more research into the specifics of a decision to not do the radiation. It seemed logical to fight cancer like a general fights a war, but while generals do win wars, they don’t usually win peace.

 Either way you go with your decision, the only certainty is that there will always be uncertainty. I’m frankly not at peace with my choice. If I didn’t have the radiation and the cancer returned, I’d be even less at peace with the choice of not having the radiation. Whichever way you go, I wish you nothing but the best, and hope that you will always be at peace with your choice. (FYI, I am a 60 year old male, was not a smoker, drinker or HPV+, and was in excellent health prior to my diagnosis)

I think you need not apologize for your feelings about radiation and the long term effects.  I do believe quality of life is important.  There is a new post from someone who had radiation in 2007 and now cannot swallow from the scar tissue and has to have a feeding tube now.  Any treatments are not without risks/benefits and need to be carefully considered.  Thank you for your input.

PJ

lornal said:

I'm the one

I'm the one getting the feeding tube on Monday - 6 years after treatment for tonsil cancer. The side affects, even this far out are a pain. But to quote my ENT after going through all the treatment..

"At least you're here to **** about it".

I take those words to heart, and do complain, grateful that I can complain. Radiation is hard.  I actually took meds before each treatment to calm me down (on a scale of 1 to 10, I am a 12 when it comes to clastrophobia) I pretty much stepped out of life for a number of months.  My husband did everything, and took care of me too. But, I got back to work about 3-4 months after treatment ended - with the aid of anit-depressants - and am still working.

 

Thanks...looks like you have done allot of research. Gammaknife was not an option for me because the new tumor was too low below the brain for the beams to reach. The docs at Mayo consulted with docs at MDA that also had all of my records in case proton therapy was the best option. When all was said and done, they agreed there was no obvious benefit to choosing proton therapy over SBRT. Yes, the beams stop at tumor opposed to quickly dropping off but there are no long term results yet w/proton therapy on a tumor such as mine. With SBRT taking 5 days and proton therapy taking 7 weeks and neither available at home, they felt good about SBRT and I respected their decision. I have been told that this spot can not be done again but if I had another isolated tumor in another spot it could be repeated. I did have a biopsy at Mayo that was amazing. It was CT guided and they went in my cheek next to my lip and worked their way back more than 4 inches to the carotid cavity passing some very important nerves, jugular and carotid artery. They wanted to make certain it was SCC from the original primary and it was. Two days later when i went to change the bandage at entry site, it was so smalll that I couldn't even find it to put a new bandage on. Side effects from the SBRT were very minimal.