In March 2018 at 64yo with an escalating PSA from <3 16 months earlier to 7.3 in 5 weeks the biopsy revealed 2 of 12 samples with Gleason 4+4 in both. Discussion with doctors at Mayo & my bride led to decision of robotic assisted radical prostatectomy with nerve sparing in 8/18. Pathology revealed no breach of the prostate wall with nothing in 19 lymph nodes.
Fast forward & in 18 months PSADT arrived. Medical team at Mayo recommended 6 months of concurrent ADT with 39 daily treatments of radiation. Because I was, & still am, self employed & working to keep my business viable, I chose to seek proton radiation closer to home. The rad onc immediately called for 24 months ADT in conjunction with the 39 radiation treatments.
I was completely unprepared for the side effects of the ADT & especially the impotence that arrived after the 2nd 3 month injection of Lupron. After the 3rd 3 month injection, depression overwhelmed me & has been hanging around since. PSA has remained at <.014 & T has been <3 since ADT started. I've endured 17 months of Lupron & more positive results from trials of PSMA-PET scans with recent approvals of PSMA-PET scans have me strongly considering ending the injections at 18. It seems from this & some other articles that the statistical differences in 18 vs 24 months is negligible & the long term quality of life is much improved.
I understand that each diagnosis is unique. I'm not looking for medical advice; only experiences from treatment protocols. As I logged in tonight, I read of 1 warrior who was stage IV & has endured 7 years of Lupron! I have a tremendous respect for that endurance, but I don't think I have it in me with the quality of life as it is now.
Thank y'all for sharing. I respect you all for your fight.
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OntheCoast
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Thank you for the reference. The PET scan prior to the salvage radiation did not indicate any spread. So the prostate bed was the focus of all the treatments.
Once the Lupron injections are stopped, I'm certain the monitoring will continue. If the PSA starts rising again, perhaps then one of the new PSMA PET scans will be available in my area to help with the next phase of treatment. In any case, I'm sure I'll be finding a new rad onc. I've been provided more information / resources through this site & others than my current rad onc team.
It is a mistake to think you can see everything in the lymph nodes with a PET scan. Most metastases are smaller than the 5mm that is minimum for a PET scan to pick up. The pelvic lymph nodes are treated on the basis of risk, not on what is already visible. You can still get salvage radiation to just the pelvic lymph nodes.
You wrote: "Fast forward & in 18 months PSADT arrived". Is this correct or you wanted to write: "BCR arrived". PSADT of 18 months is an extremely GOOD performance. Anyway, if at the time you started the sRT your PSA was low (say less than 0.2) by today's knowledge the ADT is totally redundant. You bumped onto old-school docs.
sorry maybe i used incorrect terminology. Thank you for pointing that out so that I could clarify. The PSADT is intended to communicate PSA doubling time. Yes, there was a biochemical recurrence at 18 months. The PSA at proton radiation was .44.
You were ‘completely unprepared’ for the side effects of ADT? It would not be that unusual if your rad onc (or whoever is running your care) didn’t have a talk with you about it, which is reprehensible. Is it possible you were at least provided with some literature links etc that you failed to read?
How much exercise do you do and what kind? Whatever it is, do more. Especially weight bearing. If you stop Lupron tomorrow you won’t feel any differently for months anyway.
The weight bearing exercise will chase the depression and other side effects like nothing else.
You need to do it anyway, with or without ADT drugs, with or without cancer, for that matter. , . We are old, it is non negotiable. Supremely worth it, especially if it’s the last thing you want to do.
Thanks for asking about the literature or links. I still have the folder provided after the initial virtual conference to discuss the treatment protocol and the state date during the beginning of Covid last year. I guess I wasn't listening and there's no links or info that arrived. As i was still in shock of the recurrence, I just was not smart enough to ask all the questions that so many here seem to know to ask or researched more than I did.
I'm self employed and struggle with getting hours away from my business to exercise. I walk as often as I can & ride a bike. I had surgery in both feet before prostate cancer diagnosis. So it is a challenge to get all that I know I need. I spend time playing with, chasing & lifting young grandsons. That's all the weight bearing exercise I do. Yes, I need to do more. Thanks.
For me shock of the initial diagnosis & then recurrence created for me the inability in the moment to have a presence of mind to ask questions of the doctor about the results or even anticipate what was ahead. I did seek out information & read from many websites & I read through different sections of Patrick Walsh's book Guide to Surviving Prostate Cancer. My experience has always been for me that reading provides information. However, words don't translate to the actually enduring the physically the side effects or loss. For me nothing in life from words translates to the personal pain of a loss.
I have also found that most of my doctors have practiced for so long that every procedure is routine. So they tend to not volunteer anything that is not asked & probably unintentionally down play the side effects. Maybe that's on purpose to not cause worry, but I would have liked a survey or questionnaire that asked about side effects and asked to rank with importance for me & my bride.
I have learned from my experience of the last 3 years that I must be my own advocate for patient care. It's up to me to do the research & ask the questions. When the doctor only says 'that's our treatment protocol here' and won't discuss, it's time to seek another medical professional. That's why I'm asking questions here. Personal experience is more informative to me than all the education & all the materials & medical advice & counseling from someone who has not walked in our shoes.
Welcome to the adt club.....your a lupronchaen......mine didnt tell me of side effects either...so don feel bad....this group will be the best help you can find...were all rowing the same boat...you might ask about adding erleada....but se will be more....if you can believe that ...good luck....good health.....b.e
Btw......the champ of lupron is a guy posted last monday......21 fn years......we all bowed to him....find his post ..someone will post his user name.....
Seven years of Lupron/Eligard here. Not the record, but it's a long time with lots of unseen side effects. Might not look so tough because it doesn't cause weight loss and you've still got your hair, but it's hard. Five of those years were progression free. Exercise as much as you can and tell your doctor about your depression. That they can help with. People here understand.
Best be certain that you radiation course of treatment included the entire pelvic lymph node fields and not just the prostate “bed”, as TA indicated. Go see the RO and ask him to show you this on the scans used for planning and treatment. Does not matter that there was no lymph node spread seen. That is where the risk is.As for the ADT side effects, yes that indeed sucks. Ask for a trial of an estradiol patch (such as 0.10 mg/24 hrs changed twice weekly, or similar. It can help tremendously with side effects, though not restoring libido.
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