update on husbands radiation to pelvic mets

[User14952]

A month ago I messaged asking about others experience with getting reoccurring lymph node mets after radiation and 2 years adt. He is not adt resistant yet.

We did a PSMA scan when his PSA got to .29 (he did not have the surgery, just radiation and adt and went off the adt almost a year ago), his T is at 27 now, and the scan showed 2 lymph nodes in the pelvic area with uptake. He had two pelvic bone mets found (possibly) during our initial scans, many pelvic lymph nodes, is Gleason 8, and highest PSA was 24 ish before treatment.

We spoke to the radiation oncologist again today. We are not immediately going back on adt, and will be hitting the mets with targeted radiation. He said we could keep doing the scans and radiating spots until there were “too many”, at which point we would go back on adt. The goal now is quality of life, and being on top of scans and PSA tests for when we need to go back on.

The interesting part to me is that he told us the average time he has patients in my husbands position able to do this treatment before going back on adt is 2 1/2 to 3 years, and has even gone 5 or 6. There are no guarantees, but this is very different information than I have read anywhere, and is much more positive than expected.

We will see how this route goes. Just thought I would share for those in similar circumstances who are searching for the different options people have/take. It seems there is risk to not doing a systemic treatment right now, but our team at OHSU are treating this as the standard of care and it is working for them.

Also, if you have had targeted radiation to mets as the single treatment for any length of time I would love to hear about your experience.

[Tall_Allen]

I don't know whether the metastasis-directed therapy accomplishes anything (there are no convincing data), but why not? I do know that a brief stint of intensive hormone therapy delays progression.

prostatecancer.news/2022/09...

[spw1]

Are you being advised not to continue ADT while radiating the mets?

[Seasid in reply to spw1]

Good question.

[User14952 in reply to spw1]

Correct. The goal is to not be in adt as long as possible while doing the radiation. Between the oncologist and radiation oncologist, neither of them wanted to put him back in the drugs right away.

[spw1 in reply to User14952]

that is interesting. my husband was Gleason 8 at diagnosis with PSA 50 when the biopsy was done and a few bone mets. He has been through ADT and Enzalutamide - resistant to hormones. He has had SBRT to the prostate and radiation to the right pelvis. Right now he is going through chemo (Docetaxel did not work and we are onto Cabazitaxel, waiting to see if it works). Through this entire journey, at no point did the MO or the RO want to take him off ADT. We were wondering what is the point of the injection but they said that it would stop any hormone dependent cells taking off. Each patient is different and if going off ADT did not have an adverse effect, then you can take that approach.

[Seasid]

Could you please fill out your profile information if you have time.

We don't even know your age.

[User14952 in reply to Seasid]

I put my husbands stats in the last couple posts, but I can update it in the profile too.

I’m in my 30s and a woman, so I’m out of the relevant demographic lol. My husband has a very difficult time reading anything related to his cancer, so I am here pretty much daily and randomly spout off information I have read at times he is least expecting. Seems to keep him aware at least. I have tried to get him to come here but 🤷‍♀️

[Seasid in reply to User14952]

Maybe he could do intermittent ADT.

[User14952 in reply to Seasid]

Exactly. When he goes back in the adt that’s probably what we will try while we can.

[Seasid]

Is your husband considered curable?

[User14952 in reply to Seasid]

Nope, he had 2 pelvic bone mets at diagnosis. We are going for delay of adt, not a cure.

Oddly, we had a bone scan and a ct when he was diagnosed that came back completely clear. We were setting up the surgery. Then he did an mri a week later, and that showed 20 plus enlarged lymph nodes and 2 bone mets. No one has been able to tell us why the huge discrepancy, and depending on who we are speaking to they either take the bone spots as fact or not. It’s been frustrating not knowing with those.

[Seasid in reply to User14952]

Can you with the PSMA PET scan make sure that he is not curable? Maybe you just have false positive or false negatives. I personally mainly did a PSMA PET scan to be 100% sure that I have a prostate cancer in my spine etc.

If your husband is curable than change institution and cure him.

[User14952 in reply to Seasid]

Well, we did the PSMA last month when his PSA was .29. It showed lymph nodes but no bones. We will keep doing scans while we hang out off adt as well.

OHSU was the only institution that was willing the still do the surgery if we wanted, just to relieve the tumor burden. He decided the full pelvic radiation route instead.

If he was curable, they are at least doing the things that would lead to that result.

[Seasid in reply to User14952]

I believe that he should also receive global therapy. Start Firmagon injections (ADT) 2x 120mg is the starting dose (kit is 2x4mL) and after 8 weeks have early docytaxel chemotherapy 6 cycles (75mg / m2 of body surface).

After that he can go to have intermittent ADT. (On and off.)

If you do the local radiation without an ADT and chemotherapy it is like a trap. You are reducing the PSA but not preventing the spread globaly.

I had early chemotherapy and it was a best thing I ever had. Much better than Lutetium or radiation locally.

You want a global therapy not just reducing the PSA.

Try to get into the best institution. Dana Farber cancer institute is one of them.

I am not a doctor, but you need global therapy and not just local therapies.

prostatecancer.news/2020/07...

[Seasid in reply to User14952]

Chemotherapy is the best early.

Here is the link to dr Saad:

urotoday.com/journal/everyd...

Chemotherapy is the most effective when the cancer is dividing rapidly.

For low volume cancer which is not dividing rapidly chemotherapy is not recommended. Still you should consider it as the early chemotherapy is the most effective.

You should contact a competent medical oncologist at the best cancer centers.

For me it was an easy decision as I had high volume cancer.

I wish you all the best.

[Seasid]

Interesting reading for you:

healthunlocked.com/advanced...