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

Thank you @jeffmarc and @surftohealth88 for your great and reassuring inputs.

With a Decipher score of .75 showing a very aggressive biology of my cancer, and with SVI, I will be very surprised if my urologist does not recommend RT+18 to 24 months of ADT, but we will find out soon.

I beleive there are three approaches to fighting cancer

Maximize cancer contorl and longevity regardless of side effects

Balance cancer control with good quality of life

Prioritize quality of life even at much higher recurrence risk

I could be wrong, but based on all the research I have done so far and the numbers I have crunched, and based on my value system, RT+4-6 month of ADT might be the best middle ground (the best choice for me), but I am still not sure, so I will continue to learn from my cohorts on this site and my doctors.

@grandpun

Thank you: it is reassuring to know the sideeffects are manageable and probably reversible in time - at least for some people.

Let me further explain why I am wrestling with the "ADT or no ADT, and if yes for how long ?" question.

For a person of my cancer profile, doing adjunct RT at a top medical center like UCLA under acclaimed oncologists like Dr. Amar Kishan is a no brainer since it will reduce my BCR chance by about 65% and increase my overall survival (10-12) years by about 70%. And I am learning that adding ADT may improve these percentages by 15-20% and 5-10% respectively. But I have also seen stats that not ALL patients get these benefits. In fact only a small minorty benefit from ADT; one 1 in 8 or 1 in 10!!
So everyone who adds ADT to RT is guaranteed to have side effects of varying degrees, but ONLY 1 in 8 or 1 in 10 get any benefits?

For nerdy folks like me, the cost to value ratio of ADT is very suspect , but I will continue to dig in into these numbers and learn from my chohorts and experts like Dr. Kishan. For example, I woud like to know from Dr Kishan does the 1 in 8 or 1 in 10 average number also apply to high risk folks lke me, or high risk folks benefit at a much higher rate like 1 in 2 or 1 in 3?

These are difficult choices; and know you are not alone in contemplating this topic.

Part of your decision matrix I would encourage the pathway of standards of care about the advancement of prostate cancer, going from localized to the prostate, to a few regions outside the prostate, to across the body, to being castrate sensitive to becoming castrate resistant. This sequence of events likely happened for many men in previous generations that never treated their cancer. The goal with prostate cancer is to not die from it and have something else take that role.

The potential harms are valid and real and a respectable personal choice. Some treatments will lead to other health concerns, and you will need to stop, but you won’t know until you try. Some treatments will reduce your quality of life. With ADT, I dealt with fatigue and exhaustion. If I did nothing, I felt that way. If I walked 10,000 steps and lifted weights, I felt the same way. When I experience hot flashes in public, I just look at a woman and smile and realize every woman in the world goes through menopause.

Ask your doctor about alternative standards of care. You could go on ASRI and PARP, but again, those have their own funky side health effects. I responded fine to Zytiga, but for some folks it send their blood pressure through the roof.

Thinking good thoughts as you evaluate a pathway that works best.

My side effects of ADT were very mild. A mild hot flash about once a month. I only had to shave every three days.

There was maybe a very slight loss of strength, but I don't know if that's due to aging. How to tell?

My doctor offered to take me off of ADT 18 months ago, & I initially declined. I changed my mind because I wanted to see if the cancer was gone. It's still there, but the PSA is stable at a very low level (0.09).

No more hot flashes, I have to shave every day, & no perceptible increase in strength.

See my profile for details of my treatment.

I always recommend trying ADT.

@edmond1971

Thank you for your input since it is another data point showing that the side effects of ADT are manageable for many people. Also thanks for your suggestions of some alternative standards of care I can consider.

I too wish you best of luck moving forward.

@soli
Where did you get this Information that one in eight get benefit from ADT. The benefit from ADT is that it stops your metastasis from growing and keeps any cancer from starting to grow. This happens for everyone that takes ADT so I don’t understand what you mean by getting no benefit from it, it benefits everyone.

If you mean, that people who take nothing do just as well as those that take, it may be a little deceptive since those that don’t get it have lower level prostate cancer cases, So they Aren’t expected to have further issues. That’s what happened with me.

I know for me I didn’t get ADT after surgery and it was 3 1/2 years before it came back. In my case, the cancer was isolated in my prostate, and it was removed. I was only a Gleason 4+3. I did get it just before salvage radiation, But went almost 2 1/2 years without it before it came back again. Since then, it kept me alive, My cancer would grow constantly if I didn’t take it. That’s true for many people who have advanced cases or have reoccurrences.

@dkgibson

Thanks for sharing your own experience and your recommendation to try ADT. I will definitely factor such inputs based on real world experience in making my final decision.

Best of luck in your fight against cancer.

The side effects of ADT can be anywhere between mild and severe. I was on ADT for 6 months while having salvage radiation. The side effects went away and my testosterone returned to 400 within 3 months. More recently, I was on ADT for 3 years due to a single metastasis on my sacrum. I stopped ADT 13 months ago due to the side effects. I have had no signs of PC for 4 years, but still have side effects, although my blood pressure, blood sugar and red blood count have normalized. My testosterone is slowly returning, currently at 100. Hot flashes, insomnia,
and emotional lability are still a daily occurrence.

@jeffmarc

Hi Jeff. Please check out Dr. Kishan's presentation on RT and ADT in the attached Youtube video link: https://www.youtube.com/watch

Towards the end , on a page titled ADT Meta-Analysis, he shows ADT improves both overall ten year survival and metastisis-free survival rates by 9% and 8 % respectivley, and then adds for intermediate risk patients we have to treat 18 patients to benefit 1, and for high risk patients, we have to treat 8.4 to benefit 1.

I could be wrong, but I understand this to mean roughly 1 in 8 high risk patients like me gain cancer control or life-prolonging benefit from ADT. That is because I am assuming Dr. Kishan is here giving us the Number Needed to Tread (NNT) number for ADT. And the way I understand it, NNT gives the average number of patients who must receive treatment for one patient to experience the expected beneift of the treatment.

I have already set up a consultation appointement with him for December 9th , and this is one of the many questions I will ask him since - as he clearly sated in the video- he strongly believes in adding ADT to RT, and since he also beleives an NNT number of 8 or 10 is very good in the medical field (which is very counter-intuitive to folks like me).