Hi all, my husband has just finished 3 rounds of very aggressive chemo and is now facing 6-12 weeks of intense radiation treatments. He is a 46 yr old diabetic, we have two sons, 9&12. He has alot of fear re:the radiation treatments and is actually considering not doing the radiation. New studies are finding that radiation treatments are causing other forms of cancer...between that and the feeding tube and the pain it is all very scary for him. We are meeting again with the folks at Dana Farber this week. Is there anyone who has been through this? Suggestions? Thank you.

Ashley, I think the best bet for your husband is to go for the gold. This isn't the most pleasant from of cancer and somtimes takes agressive treatment. Get rid of this OC and make the best of it. At present I am getting rads and chemo at the same time. Mine came back and after these treatments, I have to have rad seed implants put in my tongue. Maybe after another neck dissection. He doesn't want to go thur this if it can be stopped now with what he is going thru. NO teeth left, and i had nice teeth, but theyhad to be sacrified for the implants. Make him go do what is necessary to heal him.

Ashley,

Welcome to OCF. Take some time to research the main site here at OCF. Then read, read, read thru the forums here...you will see that everyone here has been thru this! Reading will give you a lot of insight on the whole mess...from start to finsh! You will see that each person has a little different experience with treatments and after effects. You will becomed armed with information that will help you thru the next weeks and months.

Information is power...take some time to absorb all that is available here, not only information but support.

Deb

Although I had a known primary at the base of the tongue, I too had Stage IV diagnosis, and had chemo, radiation and bilateral neck dissection. Doctors explained that the only way to have a realistic chance at a cure was to be aggressive, and that was all I needed to hear.

Head & Neck cancers are, as a rule, sensitive to radiation, which is one of the reasons radiation is a primary treatment modality. Most chemotherapy serves to make the cancer even more vulnerable to radiation.

I think the jury is out as to whether radiation itself causes more cancer. In my case, I'm pretty sure it was responsible for a skin cancer that popped up in the center of the radiation field on my upper chest. However, the point is that the skin cancer was easily removed and should cause no further problems. Might I get more in the future? Could something else crop up? Its possible, though certainly not probable. On the flip side, if I had only had the neck dissection and chemo, it was highly probable that I would die from the SCC in relatively short order. Choice was pretty clear from where I sat.

I realize choice may not seem as clear with an unknown primary, and each person has to make their own choice. I would personally do anything they offered to provide a reasonable chance at a cure.

Ashley,

My husband has been through surgery, chemo and radiation. It was very difficult. He finished in December and is feeling better each day. He also has a peg and will continue to need it for awhile because he needs more treatment snd has lost alot of weight. This whole thing is so scary but this website has been a lifeline for me. It helps to know you are not alone. We have three teenagers 18, 16, and 13 and they are all showing the stress in their own ways. Hang in there and know there is always hope. Sue

Ashley, he should go for the radiation. I was treated at Dana-Farber last year. They have an excellent alternative therapy department--The Zakim Center---right in the building where you can get acupuncture, reiki, and massage therapy to help with side effects. I took full advantage of all alternate therapies that my insurance company would cover. If your insurance doesn't cover these therapies, they are available for a lower rate than you would pay outside the hospital.
As Jeff said, head and neck cancers are paricularly sensitive to radiation.

Ashley,
My friend also did her radiation at Dana-Farber, and she tolerated it well, the last week being the most difficult. She did have mets to the lymph node in her neck and it did respond well to the radiation.
The Head and Neck Oncology Dept. at Dana Farber is wonderful, don't hesitate to discuss any of your concerns with them.
I hope he decides to do the radiation. And as stated above, use all the alternative therapies offerred there to make it easier on him.
I wish all the best to both of you.
Liz

Ashley,

Read my Signature Line below. As you can see I was a Stage IV also. Now I am 17 mos post treatment and I am doing great and I'm cancer free so while the treatment may be extreme and barbaric for some of us, me included, the long term side effects are minimal compared to the alternative which is death. Almost all comprehensive cancer centers, including Dana will recommend radiation, probably chemo and even perhaps surgery but I wouldn't think anyone would not recommend radiation with a Stage IV OC.

Ashley,
I had an unknown primary 10 years ago with mets to one lymph in neck. I had no chemo, but had ND and 36 XRT radiation treatments. What type of radiation are they going to be giving him? XRT or IMRT? I think for peace of mind to just know they got all the micromets, I would and did go for it. Yes, the side effects can be nasty and some may be permanent. I think the fear of the unknown is probably holding him back. Ask the doctors what they expect HIS side effects to be and the downside if he doesn't have it. This cancer is nasty and needs aggressive treatment. I'd want to know it was gone, but that's me.

Take care,
Eileen

Ashley,

Have him call me during the day at 727-322-5669. He can ask me all the questions he wants.