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Changed my treatment decision

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Posted 10/19/2021 7:41 PM (GMT 0)
After discussing my options with the urologist and radiation doctor. It seems due to many past surgeries to my abdomen, the Urologist believes he will have trouble getting it all robotically and believes I will need salvage an ADT fairly soon. So it looks like 6 weeks of IMRT and 1 year or more ADT. I get my first shot tomorrow and radiation starts mid November. Gleason 8 PSA 1.98 1 core 20% nerve involved. Thanks again to all.
Posted 10/19/2021 9:07 PM (GMT 0)
The very best of everything to you, Jack! Keep us posted and ask all your questions.

Djin
Posted 10/19/2021 10:10 PM (GMT 0)
I am confused about the change in the length of time for hormone therapy. When I first discussed radiation several weeks ago with the doctor he said 18 months of ADT. After talking with him today he said I only needed 1 year. I am only getting 28 treatments of IMRT with SPACE OAR placement. After reading many posts here, this seems like a very limited treatment. Having had a previous TURP, seeds are out of the picture. Thanks bunch for your support.
Posted 10/20/2021 3:24 AM (GMT 0)
At some point ya got's to trust your doctors...this applies to all threaders here...trust itself...transforms self and the folks trusted...logo
Posted 10/20/2021 11:24 AM (GMT 0)
Well put Logo. And good luck, Jack.
Posted 10/21/2021 3:18 AM (GMT 0)
Jack,
Logo is right that in the end you have to find a doctor you trust and then trust the doctor you have found. But if it helps you to have the opinion of some random guy on the Internet, I will add my two cents worth. Your doctor's treatment plan seems sensible to me for your risk category. Yes, we have guys here who have had more aggressive treatment but they were generally in higher risk categories and they often have bothersome side effects from their treatment. We also have guys who only do six months of ADT and do fine but they tend to be favorable intermediate risk -- usually Gleason 7(3+4) -- and your extra six months of ADT are a sensible response to your bit of Gleason 8. Your doctor seems to have you in the sweet spot where he is sufficiently treating your worrisome-but-not-dire disease without unnecessary risk of side effects.
Posted 10/21/2021 3:34 AM (GMT 0)
There is a lot of variability in terms of ADT duration between doctors, although it also varies according to the specific diagnosis as well. A decade ago, 3 years of ADT was routine and research is now suggesting that a shorter duration works as well. I was a Gleason 9 that had brachy plus IMRT and had 18 months of ADT, but we did discuss a shorter duration with as well. 1 year doesn't seem unreasonable in your case, but 18 months doesn't seem unreasonable either. To the extent that you're tolerating ADT well, you could always ask for a longer duration. I would assume your doctor would agree to that.

Most important, good luck with your IMRT!
Posted 10/21/2021 4:08 AM (GMT 0)
Peter
Thanks to both you and Logos for your support. I will trust my doctors as they surely no more than I do. My Uro today said he forgot that I had PAD and was on statins. I don’t have any heart issues but he said that he preferred I took Firmagon instead of Lupron. So, I had two shots in the stomach today. No pain or reaction so far. He said I would get 1 shot every month for 18 months. I told him that my radiologist said I would only need a year. He said that 18 months would be be better and was also the gold standard. He also said I could switch to one a day ADT in month but it might be expensive. I can’t remember what the name was, but the shots were not bad. I get the markers put in next week with one Valium and a Vicodin. Can’t wait for that experience. Lots of new things happening, I will tackle them one at a time. There are so many on this forum that have been through so much more. I will never complain. On a side note, my radiologist has overcome Lymphoma, with chemo, full body radiation and a bone marrow transplant. He was one of the first to do the Space Oar treatment. Thanks again.
Posted 10/21/2021 4:40 PM (GMT 0)
Jack, It is my impression, based on no particular research that the optimal duration of ADT depends on the sort of doctor you ask. For some reason radiologists seem to recommend shorter androgen deprivation with oncologists preferring longer durations. Urologists fall somewhere in the middle. 18 months is the growing consensus for high risk disease with studies showing that longer-term ADT (2 years or more) offers few benefits compared to 18 months and carries a higher risk of side effects including permanent hypogonadism.
Glad to hear that your firmagon shots haven't been that bothersome so far. Injection site discomfort is a frequent problem with that drug, especially the first few shots.
Posted 10/21/2021 5:48 PM (GMT 0)
Jack,

I'm 72. I was 3+4=7. Did 45 sessions of IMRT and went from PSA of 8.7 to my current. 1.2.

Godspeed, Brother!

NJ Fred
Posted 10/27/2021 11:45 PM (GMT 0)
I am now on day six after my two Firmagon injections. As I said before, the injections were not bad. Today, the two large raised hot spots have gone and the worst itching sensation has subsided. I can relate that to large mosquito bites that you are not allowed to scratch. A few night sweats, but nothing else. Just finished 10 oz bottle of magnesium citrate for tomorrow’s gold marker placement with Space OAR included. Thanks to all for your replies. I will report my experience on the 29th, as tomorrow I will be in the throws of Oxy and 2 mg of Ativan. On a side note, I have been reading many posts over the last couple of days. As I stated before, the courage I see here from all with much more involved cases than mine is very inspiring. Thanks a bunch.
Gleason 8/ 1 core 20% contained / nerve involved/ 11 cores benign.
Posted 10/28/2021 4:28 AM (GMT 0)
You are getting Oxy for space oar?
Posted 10/28/2021 5:15 AM (GMT 0)
Duck, actually I am getting the Oxy and the Ativan because I am getting both the Space OAR and the gold markers at the same time. I have read several posts where many were given anesthesia in a hospital for this procedure. I have also read where at least a couple of members had nothing. When I had my biopsy I had nothing so this should be no problem. I will report one way or the other.
Posted 10/28/2021 1:08 PM (GMT 0)
From one Jack to another, best wishes on a great outcome. The debate over length of ADT can wait. You know you are on for 12 months. That gives you a year to research and consult with other specialists and if you determine the need for a longer duration, just have another shot a year from now.

Radiation has worked great for a lot of us high risk men. Have you discussed radiating the pelvic lymph nodes? Being a G8 puts you in a risk category that things get more tricky. Mine were radiated and in no way was a problem. What do the nomograms say about probability of involvement? In my opinion, If your error, error on the side of more conservative treatment.

Regarding the radiation and ADT, a few things I did that I am sure lessened the treatment side effects. More activity, whether it is in the gym or walking around the neighborhood. It helped manage weight and was a God-send for hot flashes. They were the worst when I was inactive. Get out in nature and take your mind off of other issues. Eliminate caffeine, carbonation and alcohol beverages. These are tough on the urinary tract and will be affected by the radiation. But stay very hydrated. I drank a lot of water and replaced coffee with green tea. Increase fresh fruits and vegetables and reduce animal fats. Again good for weight control. I kept my usually high level of fiber intake and I had no bowel problems. Regarding elimination, you will probably have greater frequency and urgency. Don’t fight the feeling. And don’t trust anything, if you know what I mean. I also got a bit more gassy and loose. But no problems and all went away within two weeks of the last radiation fraction. My RO said to keep Imodium next to every pair of reading glasses, but I never needed it. Your greater level of physical activity is also beneficial for elimination habits.

You are on a great course of action and I am sure you will do very well.
Posted 10/31/2021 1:02 AM (GMT 0)
JNF, sorry for the late reply. My RO never discussed radiating the pelvic nodes. If I had my way reading the many posts here, he would radiate that area as well. I guess because the scans showed no other involvement. This is what he thinks is best now. Thanks for the summary of your experience with radiation and ADT. Right now, on ADT only, just some night sweats and some lethargy in the afternoon. I am watching my diet and exercising. I would prefer to get this knocked out with one shot, but it seems many experience much more. Thanks a bunch.
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