How do I decide?

I too had not options n other than to do all the TXs offered me. We have very different DX so different prognosis but I would have done anything I could to increase my odds even a little to have been able to stay with my child especially with a young one (my Son was 31 when I was DXd). Also, Hubby had lost his Mom to cervical cancer when he was 9. Rads do exhaust everyone - I felt better every day during rads when I started them a week after last Taxol but I had been completely and utterlycrom the Taxol.

Just my thoughts.

I also had a hard time deciding whether or not to do rads. I got 3 opinions, 1 said I should definitely do it and the others said they would probably do it but positioned it much more as my decision. The problem I had with it is that their evidence that I should do it was really based on their overall population statistics. But when you look at 1 individual it was hard to say someone like me would really benefit. And they never took into account the downsides (since frankly they don't care about the side effects they only measure overall recurrence rates).

I was very worried about increasing my odds of lymphedema and permanent tissue damage.

In the end I decided to do it, mostly because I am young (39 at diagnosis) and felt that I would always be worried about whether I had done enough).

I will tell you that rads is really nothing compared to chemo. I don't recall increased fatigue, I think the chemo had already knocked me down enough that this didn't feel any different. It's definitely a hassle to have to go every day but it's fast and then you can get on with your day. Aside from a nasty burn I really didn't have any side effects. Now 2 years later my only reminder of rads is the tiny tattoos, a darker patch of skin on my back (which is strange, my front healed with nothing noticeable) and a slightly 'tighter' implant on the radiated side. My plastic surgeon would say my response to rads was better than average (he says he can't tell by looking at me that I even had it which surprises him).

One note, my doctor does things differently - I had my exchange to permanent implants before radiation. I am not sure what the right answer is, but was glad to have healed from surgery before compromising the skin with radiation. My doctor is at Sloan Kettering which I believe always does it this way.

If you decide to do it, I would talk to them about not radiating your axilla. Since you had lymph nodes removed, they should not have to radiate that area which limits your increased risk of lymphedema. They did radiate my collarbone area (level 3 nodes) since I did not have those removed.

There are times where I read about people who decide not to do chemo against medical advice which to me feels like a foolish decision. This decision on whether or not to do radiation feels much murkier to me. Best of luck as you decide,

Rose

I don't know if you should do it or not with pulmonary histiocytosis, and think that is something you should find out more about, but if you get a 'go' on that part, I don't think the short term hassles (transportation, possible fatigue etc.) should play into your decision at all; it is the long term stuff that you are going for with this decision (ie cure). This is just my experience, but for me, compared to chemo, radiation was a piece of cake; I could actually feel my energy returning during it. As to the transportation hassle; I get it because I had to travel 100 miles for a 5 minute zap, and 100 miles home again, every day for 6 weeks.....a real pain in the butt, but a distant memory now.