BCR Prostate cancer. Need Opinions
Hi thanks for reading. Here is my story:
Grade 1 Gleason 6. PC doubling time 67 months.
2003 Radical Proctectomy. For over 10 years my PSA was < 0.1. In the 11th year it went to 0.3 then bounced around 0.3 to < 0.1. Then up to 0.3 for 9 years. Recently my PSA went to 0.48 then back down to 0.42.
PSMA was negative.
My urologist says let's keep an eye on it. I went to a Radiology oncologist, and he told me three options. Watch it, Radiation only or Radiation with Lupron. Both indicated if I am going to have Radiation now is the time.
My concern is the side effects of radiation and Lupron. But if I wait and let it rise, I will miss an opportunity for a possible cure.
Any thoughts what I should do and your thoughts on side effects?
Thanks so very much!
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How old are you?
With the handle "Sarge" I'm guessing close to my age -77- and maybe a Nam Vet too.
Read up in it on the internet-but it seems like you're a very very good candidate for "letting sleeping dogs lie".
73 ,no not a Vet. Dad and bro were in the Military. I have been doing my research. Thanks
@sarge73
I only had radiation not RP. Can I asked with a Gleason of 6 why you chose RP as your treatment?
I can comment on side affects of radiation but not hormone treatments. Radiation side affects can be mild to serious. All react differently. I had mild side affects that did not alter my lifestyle except for having to urinate more often but I had radiation of prostate so that was expected. I had some minor fatigue but it did not stop me from walking and my exercise routine. The radiation side affects slowly went away and none now 1.5 years later.
The side affects of hormone treatments are very different. What I read on MCC is something I say to myself glad I did not have to have hormone treatments.
If your R/O, urlogists are recommending radiation and hormone treatments what are they going to radiate if your PSMA does not show cancer in other parts of body.
I think others will be able to guide you with better information and feedback who had RP and then additional treatments like radiation and hormone but I wish you the best outcome!
After an RP if the PSA rises above .2 it calls for salvage radiation. I had to have it 3 1/2 years after surgery. I personally felt no side effects at all during and after seven weeks of that radiation. About 5 years later I started having incontinence issues, but not too bad.
Lupron can cause numerous side effects.
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Some people only have a couple of those side effects
You could just start taking Orgovyx instead of Lupron and if there was a real problem you could stop.
Thank you! Back in 2003 my choice for RP was based on the information I read about trying to take the prostate out if CA came back. Back then it appeared few doctors did that surgery. Thanks again
You could get a PSMA pet scan to see if there is noticeable cancer somewhere in your body. I know people that get it done at .2 and you are .42 which should be enough.
The RO does make a point about waiting. If the cancer gets out of your prostate bed then the radiation won’t do any good? If you got on Lupron really soon that could prevent it from happening.
While I did not have side effects from the seven weeks of radiation some people do get fatigue and other issues. Having the right amount of water in your bladder, every day is the important thing.
I did get a Psma. Was negative. So I am at this point. Grade 1 Gleason 6 , doubling time 67 months. Radiologist says now is the time to radiate. Trying to get second opinion. I am trying my best to do the right thing for my body. It's not cut and dry! Thanks
It's definitely not "cut and dry!"
My experience with salvage was pretty good. I had 39 treatments very little side effects with the exception of fatigue, but, I was on Orgovyx at the same time, the side effects could've been caused by either/both. I found the best thing to counter this was forced activity, gym, walks, runs and a nap in the early afternoon.
The ADT meds (Orgovyx in my case) did cause me a lot of hot flashes, a little weight gain and some joint pain. That is temporary luckily, all the side effects of that have subsided after having stopped taking it six (ish) mos ago.
Everyone is different, but, in your place, I think I'd do it.
I did radiation and six months of ADT. ADT was terrible for me. I started with Lupron but switched to Orgovyx because the side effects of Lupron got to be too much: depression, suicidal thoughts, insomnia, joint pain, tachycardia and afib episodes, total loss appetite and anorgasmia. I also lost all my body hair but that was just cosmetic. I'm now four months past stopping Orgovyx and my testosterone is much lower than the doctor expected it would be at this point so I have to see an endocrinologist. This is atypical, though, as most guys in my support group who took Orgovyx got back to normal T in 2-3 months.
I was told ADT would improve my odds by about 10% but if I had to do it again I would have just done radiation.
The main side effect from radiation for me has been ED that is treatable with 20 mg of Viagra which is a low dose, and having to pee every hour though fortunately I can sleep through the night now without having to get up. Also, dry orgasms which are weird and upsetting but I found a lube that looks like semen so no one notices.
It's a tough decision to make. Some guys would definitely do the ADT with radiation but I regret it. Not trying to talk you out of anything--just sharing my personal experience.
Thank you soooo much. Yes it's going to be a tough decision! Your kindness is wonderful.