Weighing the cancer risk reduction & quality-of-life cost of ADT?

@jeffmarc Agreed, but @soli said that he is currently undetectable at < 0.02. I conveyed what several urologist told me. After my Gleason 8 biopsy, I specifically asked if surgery would likely entail adjuvant therapy post-RARP (in which case I would have opted for RT as first-line treatment). They all told me that they would only do it only in case of either spread to lymph nodes or beyond or detectable PSA.

I had persistent PSA .19 1st test post RP.

RO recommended short term ADT (4 - 6) mos and when I indicated opposition to the ADT, he quietly said fine, but I had a 20% increase of treatment efficacy with the ADT, and recommended 4 mos.

I agreed, am glad that I agreed, hated the ADT (Orgovyx), but would have taken an additional 2 months if he suggested it.

The SPPORT trial may be informational to you.

And I do not think that the ADT has had any substantial effect on my QOL. RP. and Salvage Treatment at 72/73.

Best wishes.

Also, gratefully have had undetectable PSA < .02 for 2 yrs and my testosterone has returned to baseline.

I feel very fortunate and different men have different results.

@michaelcharles

Good input based on real world experience.

Thank you and best wishes.

@jeffmarc

Yes - true statement was lost in that sentence, I can see how it could be misunderstood.

What @topf meant was "one should think before rushing into salvage/ adjuvant RT while ultra sensitive PSA is undetectable". Most doctors just do not advise it so soon after RP since toxicity is higher when body is trying to recover and heal immediately after RP.

Actually our urologist and MO strongly advised against doing anything before BCR happens in general. RO consultation was before the first PSA came and he agreed that we can have adjuvant IF we want it and that it might be helpful, but even he told us to wait little bit longer till my husband becomes fully continent. Fortunately (knock the wood) PSA came as it is (thank heavens). At the last meeting urologist told us that we should be "thrilled" with such low PSA and to concentrate on healing and if need presents, RT will be available immediately. He told us that since he is actively doing all kinds of research that he is following all of his patients ( in thousands) for decades and is not just talking about "papers" and "statistics" but from personal experience. He also told us that he can not stress enough how diet low in animal protein (meat, eggs and milk) can positively effect delay of BCR or progression of PC in general since he did those studies.

We completely understand that BCR can happen at any time, but it can happen to any gleason and any "margin" or "no SVI" etc etc., and we decided to take one step at a time .

BUT, everybody is different and every case is different so it is at the end personal preference. I think that asking several opinions (RO, MO , urologist) is always beneficial and especially in case of adjuvant therapy.

If I could go back, I would have skipped the six months of ADT I did along with radiation. It's a full year later and I now have osteoporosis, low testosterone (it initially bounced back to normal and has been falling ever since--doctor says it's likely testicular failure), high cholesterol, less stamina during exercise and of course the sexual side effects of low T. The irony in looking at it from this side is that, while I'm probably less likely to die from prostate cancer, I'm now a lot more likely to die from something else and the low T is still causing a lot of depression symptoms even with therapy and medication. Radiation was tolerable but ADT GREATLY diminished my QOL.

Frankly, am still angry that my medical team told me "you'll have hot flashes and tiredness but you're likely to recover really quickly when you stop taking Orgovyx." Had they been honest with me I could have made a better decision.

Hi @scottbeammeup

I am very sorry to hear about your negative side effect experience with ADT but wish you improvements in coming months.

But thanks for honesty sharing your experiences so others can learn from it, ask their doctors hard questions, and make decisions that best fit their conditions and priorities.

@surftohealth88
I know you spent a lot of time going through this decision. At first you wanted the adjunct radiation and then you realized it would make sense to wait. Nothing like a low PSA to keep things as they are

@scottbeammeup
One thing that supposed to really help with the fatigue and the Depression is getting a lot of exercise. It seems contrary to logic, but I know a lot of people that have Given in to finally exercising a lot and it resolved their depression and fatigue. Exercise with weights is very important, It will keep your muscles in shape and also help with the osteoporosis. A year ago, I couldn’t get off the ground without pulling myself up on a bed or a chair or a fence. I went to the gym three times a week for an hour and within four months I was able to get up without any help.

This is talked about a lot in the ancan.org Weekly advanced prostate cancer online meetings. A lot of people have the exact problems you describe, and found that exercise made a major difference in mood and fatigue. You’re 62 or 63 you can easily do it.

Try to go to a park regularly and walk or run. If you have a problem, running because you get tired too quickly take electrolytes, They make a big difference and enable you to run longer distances. I started doing that about six months ago and my stamina increased incredibly so that I can run for a mile without stopping and I’m not fatigued or winded. At first I could only run part way, Had to walk a little then run a little, but with electrolytes I was immediately able to run a full mile without stopping. I’m 78 so I can’t run very fast but I can keep it up. Over a few months of doing it, I can now run the distance without the electrolytes.

My testosterone is less than five and I’ve been on ADT for almost eight years. I do take bone strengtheners because I’m castrate resistant. But no one would guess I have prostate cancer and have such low testosterone. I’m very active.

I'm 74. Christmas Eve will be one year on Orgovyx (daily ADT tablet) and I had nine weeks of weekday radiation last spring. Gleason 7, N1M0 (prostate plus two adjacent lymph nodes). No surgery. My oncologists are very young and more focused on cure than quality of life. I have a follow-up with the medical oncologist in the coming week and a second opinion appointment with another medical oncologist in December. From what I have read, testosterone recovery for those of us in our 70s is a coin toss. I miss sex (painful reaction to Trimix injections) but am not ready to give up to accept a surgical implant, and the other side effects of hot flashes, fatigue, loss of body hair, and muscle loss are worth considering. I've been prescribed another year of Orgovyx but will pressing the doctors hard to shorten the time or "take a holiday" until PSA (undetectable since May) rises enough to warrant action. Orgovyx also throws off blood levels and I'm not interested in trading prostate cancer cure for diabetes or stroke. I'm just looking for < 10 years of reasonable quality of life without mortality from this disease.