My husband had his prostate removed in April 2021. The cancer had spread out of the capsule and one lymph node was positive. His cancer is both acinar and ductal. After surgery he was given a 6 month Lupron shot and that is the only treatment he has had since. Details are in my profile.
He is being treated at Mayo in Phoenix and we typically see an MO, but have also seen an RO. We were advised that radiation wasn't necessary after the surgery and, in fact, the RO said what would we radiate at this point. The MO has assured us that he was doing really good and no other treatment was needed.
His PSA has been undetectable up until now. He was undetectable on 11-29-22. On 3-31-23 his PSA jumped to 6.3. We requested another test be done today, 4-3-23 and the PSA was 7.1.
We are meeting with the MO's PA on 4-5-23. I plan on telling them that we need imaging done. I am wondering if there is anything else at this point for us to request. What should the next steps be?
We have both been taken off guard by the PSA not only becoming detectable, but the fact that it seems quite high and I just don't want to forget anything. Any advice would be appreciated.
Written by
DesertDaisy
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If one LN was positive, it is certain there is more cancer in the pelvic LNs. The SOC for positive LNs is radiation to the entire pelvic LN area, 3 years of ADT, and 2 years of abiraterone.
Alternatively, he can enroll in the following clinical trial:
Can you please provide a link, that 3 years of ADT plus 2 years of abiraterone in this case has a better outcome than 2-3 years of Lupron alone? As far as I understand your post, this is currently tested in a trial and final results will be available 2026.
Sorry to hear this ! Listen I take 5000 IU of Vita D every day !Zinc 3 X a week. My Psa is ....I don't know. I get to see my DR. next week. I will walking and playing golf till I can;t .
My husband loves golf and is currently teaching our 8 year old grandson. They golf twice a week and they have been having such a great time. I broke both my shoulder and knee 2 months ago and my husband has had to take a break from golf to stay home and help me, but he finally got back to golfing last week.
I think it’s important to remember that the SOC may be different depending on where you live. Also, each person is different and the SOC may not be necessary for them all of the time. For example, I live in Italy and only doing monthly Lupron shots. That has been my SOC for the last 15 months here and I have remained undetectable. I sought out a second opinion in the States last Oct at Memorial Sloan Kettering based on comments here as well as a couple of prostate groups on FB. Oncologist at MSK said there was no need to change my therapy. At the end of the day, I would recommend maybe asking for possible thoughts here but actual treatment should only be between you and your cancer team. Like me, why take extra meds if you don’t need them at this point?
If I’m understanding your post correctly, the only post surgery treatment that he’s had is one shot of Lupron? I’m surprised that the doctor didn’t immediately start him on Lupron again and perhaps Enzalutamide or Abiraterone once he became detectable. Also why they didn’t do a PSMA scan to see what you’re dealing with. Regardless, I wouldn’t delay, time for action, time to press your doctor to provide further treatment.
He had a 3 month Lupron shot before his prostate was removed 4/2021. After the surgery the urologist gave him a 6 month Lupron shot. He has been undetectable since then and no further treatment was recommended by the MO. He has been seeing the MO since his surgery.
The 3-31-2023 PSA of 6.3 is when he became detectable again. He had another PSA on 4-3-23 and that was 7.1.
We were told by the RO that he would do a PSMA scan when his PSA got to .2 or .3.
I get monthly PSA tests due to my Gleason 9 and BRCA2. I think you should do the same with your situation due to the seriousness of the diagnosis. Just a thought.
Have you had a PSMA PET scan yet? If not that would be my choice before anything else was done...it will corroborate your current condition versus that which was noted after surgery and determine where the problem might be. At these PSA's your sensitivity is very high...Rick
I had a very similar situation, with one LN positive. My treatment included radiation and Lupron for two years. Radiation was a key element to the treatment. They took me off Lupron a little early due to side effects, but both MOs agreed. My original doctor when diagnosed told me that I was going to be the captain of the ship for treatment and I have always gotten second opinions. I deal with Johns Hopkins for second opinions to my local RO and MO. When they were not in pure agreement, which was rare, I looked to this tremendous site for input.
I would recommend getting second opinions as you move forward to make sure they are in sync, and to use this site as well.
We are all in this together, and this group knowledge is a wonderful tool.
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