Advance Metastatic Prostate Cancer with Ductal subtype
with focal cribform architecture in carcinoma (it is rare, unfortunately aggressive)
4 cores out of 15 with another questionable core with necrosis and questionable atypical cells
Stage 4 Gleason 8 3 Lytic Lesions (unusual or rare)
CT Scan, Pylarify Pet Scan, Bone Scan,
3T 3D guided MRI with write over
07/15/2022 Transperineal Biopsy
Started Firmagon 7/6/2022
Zytiga with Prednisone 7/20/2022
and Docetaxel Chemotherapy on 08/11/2022
Ductal Prostate Cancer with Crib Form Architecture is
aggressive, it cannot be monitored by psa score alone.
As it can still spread by low non existing psa numbers.
The reason we would like a scan is because with Prostate Cancer ductal subtype especially with crib form architecture….possibly Prostate Cancer does not express PSA.
PC Mets May still spread as well as to lymph nodes, it’s very troubling and scary
PSA 942.40 7/6/2022
To 2.87 08/03/2022
To 1.07 08/11/2022
To 0.41 09/01/2022
To 0.34 09/13/2022 Testosterone <7
To 0.24 10/18/2022 Testosterone <7
So, my husband has had 3 chemotherapy Docetaxel / Taxotere infusions,
His MO is resistant to do a scan to check if therapy is working…
MO has said to wait to after the 6 cycles of chemotherapy
and also wait 7 months to considered radiation
How do we state we want to be cautious and do scans as there is no issue with insurance.
Written by
Shorehousejam
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I understand your concern, as I have the same concern for my husband. He had his prostate removed in April of 2021. Both acinar and ductal types of cancer were found. The cancer was also found in one lymph node.
The only treatment he has had since surgery was a 6 month Lupron shot immediately after. His MO is relying only on the PSA test to determine treatment. Both the MO and RO have told us that there is nothing to be done until the PSA starts to go up. We discussed radiation with the RO and he asked us what would we want to radiate. I told him the prostate bed and the lymph nodes and he finally said he could do it if we wanted, but he made it clear he didn't think it was necessary.
My husband is happy not having to have treatment, but he tends to block out the ramifications of the disease and lives in the moment. I worry constantly.
We see doctors at Mayo Clinic in AZ. When he has his next appointment in December, I plan on asking for scans in hopes that we can see what's going on. Like you, I don't understand why they rely on PSA when ductal doesn't express PSA and have never been given a good explanation.
Thank you, this is our concern too, key words: why do MO rely on PSA number when ductal subtype especially with crib form architecture Prostate Cancer does not express PSA. PC Mets May still spread as well as to lymph nodes, it’s very troubling and scary
The reason is probably that at your husband's current state of disease progression as determined by all previous workup, the likelihood of picking up some non-PSA cancer activity by scan is VERY LOW..... scan 25-50 men to find one such case? Have you asked if there are other ways to look for those types of cancerous cells??
I understand the desire to know exactly what is happening, as it happens, but the real point of a scan at this stage would be to inform any potential decision to stop, change or otherwise address the particular therapy that is in progress.
I tend to think that this current triplet therapy is fairly aggressive. What would you think of adding or changing to make it more aggressive? It seems logical to me to finish out the suggested cycles of chemo before assessing the effectiveness of a therapy that your husband is less than four months into.
But I think the answer to "how do we state our concerns?" is that you simply state them directly to your MO, and perhaps seek a second opinion if he does not seem to be listening.
If you end up moving to a more novel treatment like Pluvicto where there is great unpredictability of how different men respond, then yes, I WOULD insist on PSMA-PET scans during treatment to monitor the actual effectiveness of treatments as they progress. I am in a clinical trial, without such scans, and feel as we proceed we are just shooting in the dark and hoping for the best. Not a good feeling, so believe me, I understand your concern... good luck!
Thank you for empathizing, in this day and age with all these medical devices, scans etc…there should be no reason to have anxiety, guess, estimate, or “shoot in the dark”, when we pay for health insurance.
Pylarify is like MRI, CT, Bone Scan, all in one. One visit vs 3. Just as important, you will create a BASELINE to compare against down the road. Medicare pays for one each calendar year. Best, Mike
doing PYLARIFY durind Docetaxel, or within 3 mos of Docetaxel does not make sense. But before Docetaxel would be good for baseline to compare later if Doxy was of any benefit. Mike
What are you stating? RO? PSA is not expressed in ductal subtype, my husband appreciates my concern and diligence, as he leaves it all to me to do and arrange.
you have ductal subtype? Didn’t you have a robotic radical prostatectomy? My husband wishes he could have that, it shows over all survival, according to your bio, fortunately you are doing very well
Ductal type here also. I knew that my particular cancer was not generating a lot of PSA, but I hands made the connection to ductal subtype being the reason, so I appreciate this thread of the discussion.
Why does your husband want to cut out his prostate and risk all the complications and long term side effects of that procedure if he’s already metastatic? Cutting out the prostate isn’t going to stop further metastases which can be spread by the current ones.
Is the thinking that the triple therapy won’t kill all the cancer in the prostate and that it will serve as a breeding ground for further mets? Radiation wouldn’t finish off the stuff in the gland itself?
that’s unbelievable, my brother is now having a biopsy 11/17 after 3 lesions on mri in September, his PSA is 12, they sure took their sweet time arranging the biopsy…
This is what Tall Allen said in a reply 4 years ago in regard to ductal: "Unfortunately, ductal is one of the types of prostate cancer where PSA is a poor biomarker of progression. I'm not sure which, if any, of the advanced PET scans (PSMA, Axumin, or Choline) is useful. You may have to rely on the FDG PET scan/CT to track progression. Another tool may be a Cellsearch (Circulating Tumor Cell) analysis. A doctor today told me that he has gotten insurance to pay for a Guardant360 Analysis of cell-free DNA. It normally costs about $5000 for the first and less for subsequent ones. If your insurance will cover it, it may become a useful tool in tracking progression."
He states that PSA is a poor biomarker of progression. That is my concern of relying solely on PSA.
we absolutely do have a great MO at a top teaching research hospital, both MO’s that my husband has, both have incredible experience, history, done numerous research, trials etc… I’m just over functioning worrying myself to death while my husband is fine…lol…next is a therapist for me
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