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.

@kujhawk1978

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

Jump to this post

Great synopsis.

REPLY

thanks for the input I had robotic surgery 6 years ago and until Jan of 23 my psa was 0 but it has been increasing every test till last month when it jumped from 2.4 to 3.4. I am not being encouraged to go on ADT Between my surgery and radiation I was detected with a non related kidney cancer and had my right kidney removed. During this time I was placed on Eligard and it hit me lit a sledge hammer. Are the other alternatives easier on a person than Eligard

REPLY

I’m relatively new to this, but have been on Orgovyx for five weeks now. I'd say a week or two in I felt a little "testy" or out of sorts, but my wife says I didn’t get ugly with her…although she says she could see I was edgy at times more than usual. That passed and other than fatigue (which can also be attributed to a couple other diseases I fight) my main side effect has been hot flashes. Multiple times a day and night I’m suddenly drenched in sweat.

Overall, it’s been easier than I expected, but maybe that will change with time…I just don’t know.

REPLY
@grandpun

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.

Jump to this post

All good advice. Ku Jayhawk hit on my thought that the rising psa might be useful in that you may be able to get petscans with a high degree of accuracy and possibly locate the source and determine if it can be treated locally. Ending adt is in my future in an attempt to locate sources with higher probability scans due to higher psa. Best wishes in your journey.

REPLY
@activesenior15

thanks for the input I had robotic surgery 6 years ago and until Jan of 23 my psa was 0 but it has been increasing every test till last month when it jumped from 2.4 to 3.4. I am not being encouraged to go on ADT Between my surgery and radiation I was detected with a non related kidney cancer and had my right kidney removed. During this time I was placed on Eligard and it hit me lit a sledge hammer. Are the other alternatives easier on a person than Eligard

Jump to this post

I was on Lupron injections every 3-months for 2-years.
Worst for me are the hot flashes. Like gimmick I'm all of a sudden drenched with sweat. I use Paroxetine to help those somewhat.
Overall, no 'sledge hammer' with Lupron for me.
Good luck and keep trying to get the best that fits YOU.

REPLY

Dear all,

Thank you all so much for your helpful infomation and sharing your experiences. I am now handing over the baton to my husband, who is dealing with all this. For the female partners, just ask him to notify me if you need any input from me (the wife ;). Wishing you good health and happiness.

REPLY

Thank you all for sharing your experiences and insights. For now I have still some time to contemplate what ADT regime to go for. Anticipation of acceptance of the possible side effects will be my struggle. My experience with my prostatectomy is that I adapted remarkably easy to the new normal (with a lot of support from my dear partner), essentially having lowered the bar of what I thought to be acceptable for quality of life. And now I will have to lower that bar again. But the alternative of doing nothing is deemed high risk: known outcome but unknown time span. At 66 years of age and healthy otherwise, I should not take that chance.

REPLY
@hbp

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

Jump to this post

No disagreement on "no one here is an expert..."

I am not sure about the "I would get truly expert advice and then follow it..."

Had I done that, I would have on mone-therapy vice triplet therapy, likely become resistant, then a downward path from there. I did listen, decided that was not the best choice nor it was it the best recommendation, it was perfunctory care..

Clinicians should not unduly interfere with allowing people to make informed decisions about their health and life consistent with their values, interests, and preferences.

Respect for autonomy does not exist in a vacuum, and leaving patients alone to navigate health care decisions would relinquish clinicians’ responsibility for promoting patients’ best interests.

Even as patients are encouraged to be the ultimate decider on what is done to their body, it is the clinician who possesses the medical expertise to advise them on making that decision.

Clinicians can balance these professional obligations to patients by engaging them in shared decision-making (SDM), “an approach where clinicians and patients share the best available evidence when faced with the task of making decisions, and where patients are supported to consider options, to achieve informed preferences.”

This model recognizes both that the clinician possesses expert medical knowledge and should not be relegated to a bystander role, and that patients have expert knowledge of their own lives, values, and interests to help inform and guide the decision-making. This model is also designed to avoid the undesirable extremes of patients as completely passive participants and clinicians serving solely as information purveyors without any advisory role.

People have innumerable sources for gathering medical and health information, but when they come for a medical evaluation, they generally want, and believe they will benefit from, clinician recommendations, not simply a laundry list of medical options. The shared decision making model advances clinicians as guides to the medically appropriate options while respecting and recognizing patients’ values and preferences. This promotes both quality care and respect for patients’ autonomy.

Kevin

REPLY

Kevin. I have reservations about Mono therapy being the present standard of care at an excellent facility for most G7 or greater PC. Three years ago, when I started with care at UCLA , they aggressively started me on Lupron, and Erleada for 6 months then Robo surgery then 6 more months of these meds. If they started me on a non aggressive mono therapy for my G9, locally advanced, NM, PC, I would have asked why they were being so gentle with me ( they may have had a good reason) and I would have also sought a second opinion from a new excellent facility. Generally, following my expert medical team’s advice is, I think, wise but doing my research and asking questions and being satisfied with the answers and sometimes seeking a second opinion is necessary. These are tough, life threatening decisions for all of us here. When I get to an impasse and do not have a firm belief of the right path forward, I make sure that I have an unemotional faith in my medical team and then follow their educated, seasoned advice and hope that they and I made the right decision.

REPLY
Please sign in or register to post a reply.