Father’s MRI came back with likely di... - Advanced Prostate...

Advanced Prostate Cancer

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Father’s MRI came back with likely distant spread including to bone — what to expect realistically in 2022?

nyc_son profile image

My 70 year old father has had urinary symptoms for a few years, was monitored with annual urology appointments and PSA tests. His PSA was slightly elevated this year for the first time so they finally decided to do an MRI. Results were, as far as I understand, not good. This will be confirmed in a biopsy but the scan showed almost certain cancer throughout prostate, seminal spread, lymph nodes, and masses in both femurs. I've read about metastatic PCa that reaches bones, but want to know what the very latest is.

All of that said, at the moment my father's symptoms are basically only have to pee a lot and associated discomfort. He is working, exercises fairly regularly for a man of his age (cycling). His PSA came in at around 7 (though the 4k test was around 75%). I wonder if any of this is relevant or not-super-high PSA is immaterial once it has likely spread so much.

I of course want to get my father the best care. He is otherwise very healthy. I am realistic about this, but want to be well informed. He is in NYC if that matters. Open to doctor suggestions.

To everyone else here, give you the best.

29 Replies

Right now, his first test should be a bone/scan CT, followed by a PSMA PET scan/CT. If he has distant metastases, he does not need a prostate biopsy. Take it one step at a time.

nyc_son profile image
nyc_son in reply to Tall_Allen

I think the biopsy is already in the works. Maybe can schedule the other tests separately — my sense was he needed them, and sooner rather than later. Interested to learn more but what you mentioned seem like primary goals to get across prior to treatment…

GP24 profile image
GP24 in reply to nyc_son

I would do the biopsy, just to know the Gleason score and if its intraductal.

nyc_son profile image
nyc_son in reply to GP24

Unfortunately we can’t get any other scans until the biopsy in about two weeks.

GP24 profile image
GP24 in reply to nyc_son

The Gleason score and intraductal tumorcells are part of the results of the biopsy.

nyc_son profile image
nyc_son in reply to GP24

Those seem good to know. It’s more frustration waiting for the biopsy knowing you’ll need additional testing afterwards.

Jlgjdf profile image
Jlgjdf in reply to Tall_Allen

TA, Can you please explain why the bone scan should be done prior to the PSMA scan? I thought the PSMA shows everything and is much more sensitive in terms of seeing much smaller Lesions than the bone scan. I (and possibly others) am confused about this and would be grateful for help understanding. Thank you.

Tall_Allen profile image
Tall_Allen in reply to Jlgjdf

All of the major randomized clinical trials (RCTs) were done with a bone scan/CT before PSMA PET scans became available for staging. The STAMPEDE RCT showed that men with fewer than 4 distant metastases on a bone scan will have improved survival if the prostate is irradiated. So let's suppose you skip the bone scan and there are 6 metastases on a PMSA PET scan. Is prostate radiation still worth the side effects? Bone scans are cheap and easily scheduled.

nyc_son profile image
nyc_son in reply to Tall_Allen

I’ve made a note of that should my father end up not having many bone mets. Thank you.

dhccpa profile image
dhccpa in reply to Tall_Allen

What's the reason for the bone scan followed by the PET? Won't the PET alone tell all? Or is this a stairstep approach for insurance approval?

Tall_Allen profile image
Tall_Allen in reply to dhccpa

see above

There are guys on this board initially banged up far worse than your dad and have been around for quite a bit longer than google will lead you to believe! If your dad is also in nyc sloan kettering is a top notch place to go.

He has lots of treatment options (others i am sure will provide better advice than me as to what to expect).

I’ll look into Sloan Kettering — he’s here in NYC — are they the best you’d say? Thank you for your response and the optimism.

Don_1213 profile image
Don_1213 in reply to nyc_son

Nothing against SK - but we didn't mesh well. They may be an excellent choice if you don't want to be burdened with making decisions on treatments.

Also highly thought of in NYC is Columbia/Presbyterian/Weill/Cornell (quite a mouthful - and it's two co-joined hospitals.) They are heavily involved in research and trials and have some really excellent people there. Just so you don't feel you only have one choice - I'd interview both and see which one fits best. SK tends to want everything done in-house and to their plans. Columbia/Presbyterian is a bit more flexible.

Murph256 profile image
Murph256 in reply to Don_1213

My wife was treated for a leiomyosarcoma at Columbia Presbyterian. I was treated for my PC (RP and SR) at Sloan Kettering. IMO, the contrast is stark. I would adamantly recommend MSK over Columbia Pres. I found the doctors and staff to be much more professional and organized and the physical facilities to be much cleaner and more modern at MSK. Also, many of the doctors at Columbia had originally trained at MSK.

Don_1213 profile image
Don_1213 in reply to Murph256

The doctors I saw at Columbia/Presbyterian were primarily trained at John Hopkins. I suspect the experience there may depend on what cancer you're being treated for and what department is treating you. I was talking about the urology department and prostate-cancer since that seemed applicable in this discussion.

I could enumerate the issues I had with SK, but that might just have been a bad match between my expectations and their policies.

I will comment that at Columbia/Presbyterian I was treated by the top guys (department heads, chair of the department, research directors, etc., doctors who are frequently keynote speakers at conferences..) at MSK the only people I saw were residents. I did nothing special at Columbia to see these people, I went on their website, read their bios, and made an appointment. I wasn't given that choice at MSK, I was paired up with whoever they decided I would see.

MSK did have nicer waiting rooms. For treatment rooms, both seemed outstanding.

I'll repeat what I said above: "I'd interview both and see which one fits best." It's good to have choices. Your choice likely won't be mine.

nyc_son profile image
nyc_son in reply to Don_1213

Thank you.

nyc_son profile image
nyc_son in reply to Murph256

Thank you for sharing your experience, it is helpful.

dentaltwin profile image
dentaltwin in reply to nyc_son

I was worked up and treated at MSKCC; so was my younger brother. My dad was worked up there too (though treated locally by a urologist out-patient). I was generally very satisfied with my treatment, and so far my brother and I have not had any evidence of recurrence. Of course, if your dad (like mine) has widely disseminated disease, it is unlikely he will need a surgeon. In any case, it is always helpful for the patient to be accompanied if possible by knowledgeable friends during consultations. There is a lot of rapid-fire information and we always found that everyone there missed part of the information and together we pieced together a more complete story.

This is a very individual thing. While I have no experience with NYC Columbia Pres. with my prostate (just for a broken shoulder with an affiliated orthopod via HSS), it is likely I will need a heart valve repair at some point, and if so I plan on using them.

(Also 70, also a cyclist).

nyc_son profile image
nyc_son in reply to dentaltwin

Thank you for sharing your experience.

Consult at the Sloan Kettering Cancer Center, if possible with Dr. Morris.

mskcc.org/cancer-care/docto...

nyc_son profile image
nyc_son in reply to tango65

Thank you — he’s not available for several months but there are other doctors.

PSMA PET scan. Everything else is yesterday's newspaper.

Happle58 profile image
Happle58 in reply to Justfor_

A biopsy at this point is just added discomfort. Treat the cancer, spare the person. A biopsy is not going to help and just cause discomfort.

Cynthgob profile image
Cynthgob in reply to Happle58

Agreed. Since it left the prostate maybe the biopsy should come from a lymph node(at least not as uncomfortable) at least this is what the mo did for my husband.

I would start with a 3T MRI before having a biopsy. If a biopsy is needed, make sure it’s done live in a MRI vs. having a trus /blind biopsy. Then a PMSA scan.

Don_1213 profile image
Don_1213 in reply to Bail1758

I think the PSMA-Pet scan first, then if needed the biopsy. Having the biopsy first will result in injured tissue being looked at in the PSMA-Pet scan. That possibly could change the results.

Get him to Sloan Kettering...... Kimmel Center 68th and First. The best doctor you can see is Dr. Michael Morris, but he's up to eye balls in patients. Ask him for a reference....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 05/11/2022 7:01 PM DST

Thank you, I will do my best.

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