Curious what you think?

[Mgtd]

Background: I have to take my wife for all her appointments - doctors, hair, etc. Her MO who treats her blood cancer seemed like a good doctor but I know nothing about blood cancer. So I went to her with my records for a consult with the idea it would be easier and less hassle if we could get appointments, blood work, etc. all done at one place at the same time. Save time, etc.

Medical History:

Age 79. Gleason 7 (4+3), no spread, excellent health. RO gave me 25 treatments of radiation and also did my pelvic area just in case there was some microscopic cancer cells there. I was on Lupron for 6 months. Two prior to radiation and 4 post. Tolerated radiation and ADT well by maintaining my training and diet. My RO recently released me to see her in a year. My old MO agreed to the same but I asked for a 6 month follow up. She agreed.

Testing History

Ended Lupron 9/30/23. Ended radiation on 6/26/2023

PSA T

4/1/23. 4.8. 689

From August 2023 to January 2024 my PSA was <0.01 and T rose to 233. T is now close to 700.

Since then my PSA one time was .04 and the rest of the monthly tests have been .05. My last PSA test was .05 on 8/6/2024. So I had a solid string of monthly PSA test at .05 and one at 0.04

Pat’s MO says I have biological recurrence since the PSA moved from <0.01 after LUPRON to .05. She hands me the NCCN Guidelines Version 4.2024 and suggests I may need to go on back on ADT therapy. I said NO and told her I prefer a “wait and see” approach with follow up testing if PSA rises to .5.

My rationale was that the .01 change from .04 to .05 is not significant enough to warrant that and I really suspect that 0.05 is actually my radiation nadir and it has been holding strong even with my strong T response. Also with a rise in T you can expect a rise in PSA.

I plan to stay with my first MO even though it would have been more convenient to switch.

Interested in reading your thoughts!

[GP24]

"Pat’s MO says I have biological recurrence since the PSA moved from <0.01 after LUPRON to .05". This could be the case after surgery. A recurrence after RT is usually defined as a PSA rise above 2.0 ng/ml. Then you can either radiate the recurrent cancer and thereby cut the PSA value e.g. in half or start with ADT then or later. Some doctors start with ADT when the patient experiences pain from bone mets, but most patients prefer to start earlier.

[Tall_Allen]

I agree with you. Exactly what in the NCCN Guidelines Version 4.2024 is she referring to that says differently?

[Mgtd in reply to Tall_Allen]

Honestly I do not know. She just handed me the three pages without any real explanation.

I was kind of in shock when she started on about using both first and second generation ADT with a sustained PSA of .05 a year after radiation.

The entire first patient meeting lasted maybe 5 to 10 minutes. I was disappointed to say the least. The only thing I learned was to not return as a patient.

[SteveTheJ in reply to Mgtd]

sounds like a wise decision

[Lrv44221]

Hi Mgt,

I’m the wife so I understand and appreciate your thoughts. As i suggested to my Psa hubby, do what YOU think 🤔

He chooses what is right for him and i believe in that for you too

I also do agree that going for drs appointments blood work together etc is good and probably easier

Leigh 😘💜💜💜

[Mgtd in reply to Lrv44221]

Thanks. Funny you and my wife are alike. She said you probably know more about this cancer and treatment options then I ever will so do you best.

[Lrv44221 in reply to Mgtd]

Leigh again. Yes I believe you know what you want to do as well as what you’re thinking about doing. Your wife has got to be feeling poorly too with her cancer

For us, with my husband’s cancer that has spread to bones lungs and lymph nodes i might have just wanted him to live the test of his life in as little discomfort and pain as possible without any more medical intervention

But it’s his life and i support his decision

Just like for you …..i support (and probably your wife) your decision 💜💜💜

[Don_1213]

I think you need a MO who specializes in PCa - not in blood cancers. The one your wife is using apparently doesn't understand the PSA dynamics after radiation and ADT. Your's sound wonderful to me - expecially with your outstanding T reads (that's teenage T levels).

Basically for long term ADT (18 months or more) it seems it takes about 6 months after the last shot for it to fully clear the body and T starts to rise. Obviously that's been different for you with 6 months of ADT.

PSA bounce and T related increases are real things.

I have the opposite issue - after recovering to old-man T level 6 months after ADT was done, my T has started dropping, and my PSA, which had been at around 0.2 +/-0.02 is now hovering around 0.15 (and dropping.) You still have some prostate tissue left - and despite it being zapped - it will respond a bit to testoserone and up your PSA a bit.

[Mgtd in reply to Don_1213]

I agree with you however where we live that is not possible and with my wife’s medical condition travel is not really feasible. So I will stay with my original MO because at least she was open to shared decision making.

[j-o-h-n]

Stay and wait in the car...........

Good Luck, Good Health and Good Humor.

j-o-h-n

[fzpinc1]

I was on Lupron forseveral years following prostatectomy, 39 days of radiation and then hormone therapy (Lupron). It has now been 7 years since surgery and subsequent treatments. With an undetectable PSA, I went off Lupron for a year. We moved to France. This year, ny PSA went fron "undetectable" to a 2 and my doctor went into overdrive. We found a tumor in my right hip. The important thing is not that it was at 2, but the RATE OF GROWTH, (or doubling) that was alarming! Immediately back onto hormone therapy. 3 radiation sessions (stereotactic) and my PSA at 0.06. It's the rate of growth that's critical! I discovered that there is no need to panic until the rate of growth/doubling is significant. Hormone therapy is not a comfy thing, but it works - and beats the alternative.