Getting ready for SRT/ADT

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.

Thanks for your response, Joe. Your comments reaffirm my question as to why the reluctance on the casodex. At first, I was all in on the Firmagon shots, and asked him why I couldn't just have those every month for 6 months. Then he told me about the pain, and I rethought it. I can handle pain, but from what I've now read, it can be pretty intense for 2-3 days. If the pills are painless, I'd rather do that even if they have to monitor my liver function. My doctor did mention the cost, though that's not a problem for me with my insurance. Maybe he didn't know my insurance would cover it.

So now I'm thinking of asking for 30 days of casodex and a 6 month Lupron shot. Could the pain from the shot interfere with my ability to get SRT during that time, though? Seems the old bod can only take so much at one time.

With SRT, there is no hard and fast thinking on adding HT to the mix. I met with 3 RO's before undergoing SRT. 2 of them, had strong opinions about not doing HT with SRT, as they wanted to see what the radiation did on its own. the 3rd ro, was pushing for HT, but when I pushed for evidence, he didn't have it, and in the end, he admitted that he couldn't prove that I needed HT with the SRT, and that he couldn't prove that it would help. that was enough for me to bypass mixing up HT with the radiation.

I had tomography on the latest and greatest IMRT machine in my area at the time 3 years ago, for all the talk of precision aiming, etc - for me, it turned into a disaster of biblical scale (lol), and left me disabled for life with perm. chronic pain. I was one of the unlucky ones.

Sounds like you are doing all the right steps in learning your options, so choose wisely, and choose well.
BTW, I had 72 gys just in the pelvic bed, spread over 39 sessions.

david in sc

David, I didn't know you had tomotherapy, I missed that in your earlier posts. Ouch, goes to show that the doctors and techs are much more important than the technology. When I spoke with my RO he suggested the IGRT machine and when I asked about tomo he sort of threw it out there like, you can have that if you want. I note tomotherapy is in a separate facility from the hospital, so maybe he's not as closely connected with that as with the IGRT guys. I'll probably just go ahead with the IGRT.

proscapt, thanks for those great links. I have a 20% better shot with ADT by that nomogram. I wonder why my urologist didn't refer to that? He said there were no controlled or large trials, maybe those nomograms are based on smaller or uncontrolled trials. Doesn't matter, if that's the best data we have.

One thing I still don't understand is when SRT should begin in relation with ADT. My urologist thought they could begin at the same time, but from what I've seen in reports and posts here show the SRT often being delayed for several months after ADT. Seems like you'd want time for ADT to weaken the cancer cells before zapping the with radiation. On the other hand, both ADT and SRT have long tails so maybe it doesn't matter. Is there a protocol for the timing?

i was offered igrt or imrt, but in the end my ill-fated RO chose the tomography/imrt, because it was suppose to be safer and more accurate. i started getting burned by the radiation on a completely empty bladder by my 4th of 39 treatments. these claims were laughed off and dismissed by the RO and the operators. the burnings continued to worsen till the very last treatment, but by then, my bladder was essentially destroyed, along with my bladder neck. i got to live the next 51 weeks with a suprapubic catheter, hoping for natural healing that never came, and thus had to consent to the ileal conduit surgery, bypassing my bladder for life, leaving me with a stoma to urinate through. rare? perhaps, but there are plenty of other horror stories out there from short and long term radiation damage aside from what happened to me. the biggest slap in the face, was that for all that radiation, 72 gys, it didnt remotely slow down my remaining cancer. either it missed the targeted areas, or it was never in the prostate bed to begin with. hope one day, there can be some kind of super scan that could determine that before any many undergoes salvage radiation.

david

Al
I hadn't heard of that C11 treatment. I looked it up, and it appears to be a way of imaging small areas of recurrent cancer. But I wonder, if the PSA is up, and there is no prostate, doesn't that already indicate there are cancer cells somewhere, but not sure where? So, if the C11 scan finds it, what is the benefit? Can they go in and remove it surgically, or would they only radiate that specific area and avoid many of the SEs from a wider treatment? Sounds very interesting, I'm arranging an appt with a research oncologist and will certainly ask about that.

Last night I hit the wall of worry and didn't sleep much, thinking about all the SRT/ ADT options, SEs, etc. One thing I've tried to tell myself is that self-pity is not allowed. It's a lot easier to follow that in the daytime than in the middle of the night when the brain isn't working well.

I think that I can deal with a lot, as long as I can stay fairly active. I plan on getting a personal trainer, and I play golf a couple of times a week. If I can keep this up, I'll be OK, and my doctor tells me I should be able to do these things even with SRT and a short 6 month course of ADT. But then I've read some posts from some guys who've had a hard time even climbing stairs while on ADT and frankly that scares the hell out of me.

Well, this week I have my "simulation" for SRT this Thursday. Thanks to compiler and all the other SRT guys that have gone before and shared their experience with us. Makes for captivating reading :)

I had 6 month ADT with proton for primary treatment, I was given 2, 3 month shots of Trelstar 11.25mg. Trelstar was given in the rear end, no real pain. My hot flashes have never been worse than a sweaty brow. No night sweats. I do wake up when I come to light sleep cycles, but go back to sleep. There were plenty of guys doing the Lupron and Casodex combo, but it seemed that their side effects were more pronounced. Lots of guys that said they would wake up soaked in sweat.
Just thought I would mention Trelstar as a possible alternative ADT.

Wish you the best,
Kris

Good luck Reachout.
Drink about 20 ounces of water before each session to protect your bladder or ask your doctor.
They don't usually give instructions about this.Just reminded!
best wishes.
Al

News, stix, after buying a supply if casodex I got a second RO opinion, and decided to just go with the radiation. I had 2 recommendations for no ADT and one "could go either way," so I'm going cold turkey for now.

Got a call from the nurse for tomorrow`s appt. I have to use a fleet enema tonight, just a light meal no later than 2 hours before my appt, and drink water before to fill the bladder. Then drink lots of water afterwards to flush out the penile contrast. Penile contrast? Wasn't told about that. I don't know what it is, but I don't like any term that starts with "penile."

Thanks for all your suggestions.

Had my CT scans today. I thought it was supposed to be the simulation but all they did was a CT scan and three tattoos. Simulation is Feb 4 then daily treatments. Worst part was holding a full bladder while they were delayed for another patient. Best part was the tech telling me she checked with the RO and I didn't need a penile contrast after all. She was young and good looking, would've been an interesting exercise even without trimix :)