How to decide what next for ADT?

Posted by whatsnext4us @whatsnext4us, Jul 27 4:21pm

My husband had a prostatectomy in 2016 when PSA was 22. Gleason score 7 (4+3). Cancer was autopsied as mildly aggressive. Residual afterwards was PSA 0. Came back and when at 0.2 in 2022 radiation therapy. Result: PSA 0.08. But now it's climbing after a short while of hovering from 0.10 - 0.12. Currently it's climbing and now at 0.15. Blood tests every 3 months.
Doc advices ADT. We don;t have any idea how or when to go forward and need support. I, as hubbies wife, am worried about mood changes during the ADT as he has always been kind and loving to me. Thanks in advance for your time and wishing you health.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

I am not an expert and frankly no one here is an expert. If I were in this situation, I would get truly expert advice and then follow it. I was on ADT for over a year and it was manageable. Good Luck

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I am in a similar boat. PSA is creeping up, and doc says I'll probably need to go back on ADT "sometime."

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Haven’t been on ADT, but I have researched the subject a bit.

You may want to read my question on this topic, read a watch some of the posted references and answers.

You could also ask your doctor about the ArteraAI Prostate Test.
https://connect.mayoclinic.org/discussion/should-you-start-adt-after-radiation-treatment-or-not/

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Thank you for mentioning this test. We will certainly ask the doc.

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I have been on first and second generation ADT for three months. The first month was tough and I’ll admit I had some mood swings. I also felt pretty sensitive however by the 4th week things settled down and my marriage to my wife of 44 years has never been stronger.

FYI: for first generation ADT I am on ORGOVYX daily pills instead of LUPRON shots. The out-of-pocket cost for ORGOVYX is a lot more than LUPRON shots but I and everyone else that I know that takes ORGOVYX has expressed that the side effects were more tolerable than the LUPRON shots.

Good luck to both of you on your journey. We’re here if you need us.

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My experience was Lupron has been very negative but I don't want to discourage your husband if he needs ADT. My side effects were somewhat atypical: chills instead of hot flashes, weight loss instead of weight gain, etc. but it did send me into a depression unlike anything I'd ever experienced before and it still comes on me for several hours a day. I occasionally will get angry, which is uncharacteristic of me, but not as often as sad. When this happens I just stay away from other people.

Maybe tell the doctor you want Orgovyxx (daily pills) so your husband can stop if it's too much? If it's too expensive, you can ask for a one month Lupron shot instead of the 3 or 6 month shot so that, again, if it's too much your husband can stop.

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Here are some ideas and questions to review with your health team

Location – Identifying where the cancer is in the body would be of interest. The PSA levels are very low so the more sophisticated tests such as PSMA PET might help at this point. I have read that some doctors like to wait until the PSA rises to 2 before using the PSMA PET tool. There are also more traditional tools like Bone scan, MRI scan, CT scan. In general, I’d want to get a sense of where the cancer is located before diving deep into a solution. Also, I’d want to learn about genetics, does your partner has a BRCA1/2 gene mutation.

Personal options – The decision to have surgery likely arrived upon by considering a multitude of options not limited to active surveillance. Now that you have some form of biochemical recurrence, it may be helpful to revisit the broad treatment paths (do nothing and ignore it, monitor it and be prepared, take action now, etc.) Having a sense of your own feelings towards these options will benefit the conversation with your team.

Professional options – Same question but more so focused on the perspective of what other options the health team has put on the table for review. If they have arrived at ADT as a potential path forward, are there other options that they think are not going to be as effective (but might have some benefit) or too extreme. Overall, the treatment options for biochemical recurrence (BCR) hormone sensitive prostate cancer are quite extensive.

For perspective, I’m 53 years old. I had surgery 12 years ago with clear margins (GS7(4+3)) and recurrence 2 years ago and now in my 21st month of a 24th month program of couplet ADT (Leuprolide (Eligard) and Abiraterone (Zytiga)) and with the recurrence my genetics testing showed I have BRCA2.

Keep the faith. Ask questions.

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I've been on Orgovyx for 7 months and will continue through December followed by a holiday. My experience is moderate weight gain and hot flashes/sweating. Annoying but manageable.

As far as Orgovyx vs Lupron ... there are potentials for great side effects with Lupron especially if you have cardiovascular disease. On the flip side, Lupron is a less expensive treatment. Orgovyx will cost around $2900+-/mo. What you end up paying is determined by your insurance assuming you have insurance. I'm on Medicare with a supplemental plan and I'm in the "catastrophic zone" which means I pay zero dollars for the remainder of the year.

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The side effects of ADR, all types, are well known.

The questions is, if your husband accepts the recommendations of his medical team, which ones will he experience, what will their severity be...

It is not possible to answer that... We can give you our experience, but that's it.

I've been on ADT twice, 18 months of Lupron, 12 months of Orgovyx

Side effects I experienced:

Weight gain - mid-section
Hot flashes
Fatigue
Muscle and joint stiffness
Genitalia shrinkage

All were annoying, irritating, none were life altering in the sense of disrupting what I normally do - go the gym, ride my bike, do yard work, ski, vacation, o to concerts....

When I stopped ADT, the side effects gradually subsided, faster with Orgovyx than Lupron

Some men will experience depression, if they are able and willing to recognize it, their medical team can help.

If you are not familiar with the NCCN Guidelines, consider taking the time to do so.

One thing that may mitigate the side effects is exercise. Running marathons is not necessary, nor are doing Ironmans... walking, swimming, biking, pickleball,...resistance training are definite consider doing. If he is not a lifelong fitness mindset, start slow, increase gradually.

From the clinical data you describe, appears he has had surgery and possibly SRT, now PSA is on the rise. At .015, he may not need to decide on treatment, rather continue with PSA tests as you describe. If it continues to rise, you can calculate PSA doubling and velocity using the MSKCC Nomograms - https://www.mskcc.org/nomograms/prostate/psa_doubling_time - that along with GS, Grade Group and results from imaging can serve to guide discussions on treatment

He may also consider imaging at a point in the future. Current PSMA pet scans can locate at .2 or lower but statistical probability is better between .5-1.0.

He will have choices if and when he decides to treat, a plethora of choices. Mono-therapy with ADT may not be one of those. Generally, doublet or triplet therapy with ADT, ARI, MDT, Chemotherapy...As part of those choices he may discuss intermittent ADT, treat for a defined vice continuous period, stop if undetectable, monitor, go back on when...

Acting solely based on a rising PSA, particularly one that is .15 may not be a decision he needs to make now. He may have time to gather additional data, then informed by that, decided in concert with his medical team.

Keep the members of the forum informed, lots of experience though as @hbp said, we are not medical experts who are trained, educated and board certified. Still, the school of hard knocks is a great teacher...

Here's an interesting article which may be pertinent to his decision making - https://www.urotoday.com/conference-highlights/apccc-2024/151514-apccc-2024-in-which-patients-with-metachronous-low-volume-mhspc-do-you-recommend-total-therapy.html?utm_source=newsletter_13176&utm_medium=email&utm_campaign=prostate-cancer-daily

Kevin

Shared files

2023 PCA NCC Guidelines - Advanced (Patient) (2023-PCA-NCC-Guidelines-Advanced-Patient.pdf)

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All the comments provided already are excellent and quite varied to reflect the unique paths we're all upon with PC.
The Good Lord (Higher Power) we embrace has provided us with great tools of intelligence, curiosity, strength, great doctors, and also very important, family & friends, bravery and faith. Use them as each journey is different and kind of the same.
Study, consider, trust, and FIGHT it every minute.
God Speed to you and all our colleagues in this struggle.

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