On Triplicate Therapy, Docetaxel, MO has made no suggestion to do PSMA Scan, CT Scan or MRI to see if treatment is working.

[Shorehousejam]

Diagnosed

By PSA Score 942.40 July 2022

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.

[Seasid]

i just recently had my scans after almost 4 years not having any.

all my recent scans are clear exept my prostate.

i believe it is reasonable if your PSA is low to wait until the end of the chemotherapy.

after my early chemotherapy I did a nuclear medicine bone scan only.

i didn't do a CT scan.

i did do the MRI of my spine.

[EdBacon in reply to Seasid]

I agree with this response.

[DesertDaisy]

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.

[Shorehousejam in reply to DesertDaisy]

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

[maley2711 in reply to Shorehousejam]

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??

[cesanon]

Scans generate false negatives at low PSA levels

[noahware]

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!

[Shorehousejam in reply to noahware]

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.

[Spyder54]

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

[Spyder54 in reply to Spyder54]

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

[Shorehousejam in reply to Spyder54]

Yes, that was his first scan to diagnose

[Tall_Allen]

What would you do differently if you had scans now vs after 6 infusions?

[EdBacon in reply to Tall_Allen]

Always the important question to ask. How would the results (of any test) affect the treatment decision?

[Shorehousejam in reply to Tall_Allen]

Change the type of chemotherapy or move on to LU 177

[Seasid in reply to Shorehousejam]

i am not a doctor but I always advice people to have an early docytaxel chemotherapy 6 cycles. It is best for you early. I believe it helped me.

you should not have concerns about the effectiveness of the triple therapy what you are doing.

the only reason to stop chemotherapy before the end of the 6 th cycle would be toxicity.

[Shorehousejam in reply to Seasid]

Yes my husband has had as aggressive and early treatment as he can get, but no radiation or surgery

[Tall_Allen in reply to Shorehousejam]

Pluvicto:

prostatecancer.news/2020/05...

[Shorehousejam in reply to Tall_Allen]

Thank you

[Shorehousejam]

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.

[Shorehousejam]

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

[Gl448 in reply to Shorehousejam]

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?

[DesertDaisy]

Because he has the ductal type of prostate cancer which DOES NOT express PSA, that's why.

[Shorehousejam]

Correct, misstated, meaning pca can spread to lymph nodes and bones at a very low expression of PSA

[Shorehousejam]

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…

[Shorehousejam]

he is 68

[DesertDaisy]

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.

[Shorehousejam]

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

[Mrtroxely]

my opinion/thought/wish/hope, would be.

as the title steers to.

is have all the scans, pet pmsa, full MRI, bone scan, blood tests, biopsys.(I've had PSA, pelvic MRI(, bone scan, not whoe body)

Then a set period of time after ADT/CHEMO/RADIO/SURGERY or chosen THERAPY. rescan/test.....

but also collect data on lifestyle at points of test, even as treatment choices

this clear info will help us, will also help the next poor fucker and his family......,



[Shorehousejam in reply to Mrtroxely]

So true, well stated