Posted 1/9/2013 9:36 AM (GMT -6)
Yesterday I met with my urologist, after meeting with the radiation oncologist last month. I’d appreciate any comment from you guys who have walked this path ahead of me in case anything I jotted down doesn’t sound right to you.
The urologist went through my CT with contrast scans and said my bones look clear, no evidence of any spread. He said he expected this, and only ordered the tests to have a baseline for the future. That’s pretty much what I expected as well after reading the experiences on this site.
He agreed with the RO that I should go ahead and have SRT with the IGRT machine and my regional hospital.
We then discussed ADT, and I told him the RO didn’t think I needed it. I took with me printouts of a couple of studies that showed the benefits of ADT with SRT but was concerned about its duration and SEs (studies I learned about from this site). One of them showed survival benefits with just 6 months of ADT. He said he knew about all of those studies, but they’re for radiation as primary treatment, there’s no controlled studies about the effectiveness of ADT with SRT after surgery (is that right?). However, he did agree that with my numbers and history, I could go ahead with ADT but he thinks 6 months should be enough to give me whatever benefit I can get. With 6 months I will get benefit but avoid the long term SEs of ADT. The SEs he said to expect are what I already heard about – hot flashes, muscle loss, tiredness, mood swings, but he didn’t think I’d have to worry about any serious SEs such as heart problems or diabetes. I asked him if I could go off ADT if I was one of the rare guys who get serious SEs and he said yes but that there’s ways of lessening the SEs if they occur.
This is consistent with Mel’s experience, it seems ROs don’t really encourage ADT, but the numbers we’ve all seen suggest at least some improvement in outcomes.
As far as the type of ADT he suggested Lupron and I asked him about the testosterone flare that I’d heard about, and about Casodex (I’m surprised he didn’t bring this up himself, maybe he would have eventually). He said rather than Casodex he recommends Firmagon as a 1 month shot, because it works immediately, then a 6 month Lupron shot for a total of 7 months. He said he had no problem with Casodex (which he says is more popular in Europe) but that it comes in a daily pill that I’d have to remember to take every day, and it’s more expensive. I told him I take a lot of pills anyway so I wouldn’t forget, and I didn’t mind the extra cost. He then said he could put me on Casodex but would have to test my liver function because it was hard on the liver. This got me to thinking, and maybe Firmagon/Lupron shots would be easier. I asked him why not monthly Firmagon shots and he said I could do that but they can hurt a lot, so now I’m back to the 1 month Firmagon and 6 month Casodex, which I could begin in a couple of days.
I now need to ask my RO if I need to wait after getting the Firmagon before beginning SRT. My urologist didn’t think I’d need to wait.
I also asked him if there’s any benefit for Tomotherapy vs IGRT, because my RO said I could have either type. He said he’d leave that to the RO and me, but in his opinion, since the entire prostate bed is getting radiation, he didn’t think I’d get much extra benefit from the more precise tomotherapy. Makes sense to me but I’ll ask my RO again.
One thing I'm doing for myself is signing up with a personal trainer to maintain my muscle mass while on ADT.
So that’s where I am. Again, I’d appreciate any comment from any of you, this site is a great source for sharing information and supporting each other. I felt like a very informed patient when I went to see my doctors.