NED after chemo yet still 7 weeks of radiation?

Similar Scenario
First off, welcome to our forum, great people here, and tons of knowledge and expereince.

Similar scenario, not with me, but a story that my ENT had told me. Of a young lady with similar results. She opted not to have the radiation and last I heard she is fine.

But definitely was not his recommendation.

The option is always his (your husband), I guess it depends on how lucky he feels (in my opinion).

I personally trust my ENT and I have to say, I trust him with my life. Because I feel that his diagnosis, treatment plan, and professional experience saved my life.

He has been spot on with all of his experience and knowledge and even though some things might not be what I like or want, I'd go with his recommendations.

I guess your decisions are going to be based on your relationship with your medical professionals, or someone whom might not have been involved with your specific treatment along the way.

I'm sure you can always find someone that agrees with the choice that you are looking for, but who knows if it's the best choice.

I went through all nine weeks of cisplatin, taxotere and 5FU, then seven weeks of concurrent weekly carboplatin and daily radiation.

My primary (tonsils) were removed first thing. The secondary a tumor or swollen lymph node in my neck dissolved before the last round of the initial chemo. Was I clear of cancer at that time...maybe, probably, but the recommendation was to hit it as hard as I could stand with the hopes of no recurrence.

So I went with their decision and never looked back. Yes I'd rather not had the additional seven weeks. Yes the radiation has the most long lasting effects. But if it killed the cancer long term, it'll be worth it.

Best to you on your hard decison,
John

Welcome
Junshu,

Sorry you need support - glad you found this site.

The way my doc put it, the chemo (TPF for induction, then carboplatin with rads) would beat down the cancer, and the rads would finish it off. Sounds like your husband's chemo did both jobs. Has your hubby's doc explained why she advises going with radiation, even though he's NED?

ballerinazh said:

Bob
It's comforting to meet someone here that has a similar condition. However, my husband's doctor is not planning to do radiation on his bone mets. She said his bone mets were initially only detectable by PET, not CT, so they are not able to accurately locate the bone mets for radiation treatment. Do you mind sharing some details about your mets? Were they tumors visible on CT?

Mets
The mets were visible as spots with the PET, not actual tumors but hot spots. They were pretty bright, almost as bright as the tumors in my head which were quite large. I got two second opinions before starting chemo and the doc at Stanford suggested a spinal biopsy to make sure it was actually cancer and not old injuries because if it wasn't cancer that would mean that the cancer hadn't gotten into the blood and spread to the bone, making it technically "curable" and changing the whole treatment and prognosis. I did get the spinal biopsy which came back "inconclusive but highly suspicious". So we went ahead and assumed that the spots were in fact mets though I remain hopeful that they were not. The standard protocol calls for 3 rounds of Cisplatin/Gemzar followed by 35 rads to the head concurrent with 3 more rounds of Cispatin only and rads to the bone mets based on their size and original illumination. So even though I had a clean PET after the first 2 rounds we have stayed true to course and are following the protocol because it has the best success rate. I really, really, really wanted to be done after the first 3 rounds, especially because I had the clean PET. My second and third opinions both agreed that it was highly unlikely that 3 rounds of chemo had got it all and because the potential for recurrence in the head was so likely and so painful and destructive, I needed to receive the radiation treatment, but dialed down a bit since there were no actual tumors or spots left to radiate. I do receive a bit less radiation over the full course, but not much. It seems to me that if they were able to see the mets with the PET scan they should know exactly where they are and should be able to radiate those spots fairly accurately. Have you received second and third opinions on your husband's treatment? It is ok and sometimes necessary to tell your docs that you need to wait to start anything until you understand everything and have got those other opinions. I have done that 3 different times now with my docs and it has made a big difference in my understanding and confidence in treatment. It's also important for the docs to know that you are the one that decides what course to take and when to start it. Just because it is on their schedule does not mean you have scheduled it. With your husbands clean scan it seems like you should have a little bit of time to step back and really look at the whole picture and get other opinions before doing anything. These are big decisions you guys are making. Don't let anyone pressure you to make them any faster than you feel comfortable with. You'll make the right decision. You'll get through this. My thoughts and prayers are with you both.

Bob