Outside of PSMA scans what tests are important to new patients?

Posted by ozelli @ozelli, Jul 19 4:04am

If you were to be newly diagnosed and looking for info about what kinds of things might you search for, what would be your go-to search words?
Can we leave this thread for those early in their prostate cancer journey?

If you are further along the road, this may not be the best place to comment. Those newbies are pretty skittish as they stand. Let’s make them feel like they can ask us anything.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Possible the most important is a second opinion on the biopsy.

If appropriate after diagnosis, Decipher

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Concur with @toolbelt. I do thing those in treatment or completed them can offer a great deal of advice. They have been through all phases of discovery of disease, options, treatments and work and did not work for them. I learned from their mistakes, what they did right and wrong, and so many suggestions I would have never had the experience and knowledge of those who have been through it all to know their experience and knowledge.

I do concur the best recommendation when you get a prostrate cancer diagnosis is to get a second opinion from a experienced and most up to day institution or clinic. With that the can guide you on tests, treatments, and most important the recent researches of both pros and cons of most questions you could have.

When I was diagnozed with prostrate cancer I did not know about MCC. I went through the begining basically on my own but had such an outstanding PCP at Mayo he was the one who gave me all the research he had done, and the pros and cons, and the following of his patients. It was at a Mayo Clinic seminar on prostrate cancer than I learned about MCC. I have thanked dozens and dozens of fellow PC patients for their experiences and knowledge. toolbelt
I do concur the best recommendation when you get a prostrate cancer diagnosis is to get a second opinion from a experienced and most up to day institution or clinic. With that the can guide you on tests, treatments, and most important the recent researches of both pros and cons of most questions you could have.

When I was diagnozed with prostrate cancer I did not know about MCC. I went through the begining basically on my own but had such an outstanding PCP at Mayo he was the one who gave me all the research he had done, and the pros and cons, and the following of his patients. It was at a Mayo Clinic seminar on prostrate cancer than I learned about MCC. I have thanked dozens and dozens of fellow PC patients for their experiences and knowledge.

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@jc76

Concur with @toolbelt. I do thing those in treatment or completed them can offer a great deal of advice. They have been through all phases of discovery of disease, options, treatments and work and did not work for them. I learned from their mistakes, what they did right and wrong, and so many suggestions I would have never had the experience and knowledge of those who have been through it all to know their experience and knowledge.

I do concur the best recommendation when you get a prostrate cancer diagnosis is to get a second opinion from a experienced and most up to day institution or clinic. With that the can guide you on tests, treatments, and most important the recent researches of both pros and cons of most questions you could have.

When I was diagnozed with prostrate cancer I did not know about MCC. I went through the begining basically on my own but had such an outstanding PCP at Mayo he was the one who gave me all the research he had done, and the pros and cons, and the following of his patients. It was at a Mayo Clinic seminar on prostrate cancer than I learned about MCC. I have thanked dozens and dozens of fellow PC patients for their experiences and knowledge. toolbelt
I do concur the best recommendation when you get a prostrate cancer diagnosis is to get a second opinion from a experienced and most up to day institution or clinic. With that the can guide you on tests, treatments, and most important the recent researches of both pros and cons of most questions you could have.

When I was diagnozed with prostrate cancer I did not know about MCC. I went through the begining basically on my own but had such an outstanding PCP at Mayo he was the one who gave me all the research he had done, and the pros and cons, and the following of his patients. It was at a Mayo Clinic seminar on prostrate cancer than I learned about MCC. I have thanked dozens and dozens of fellow PC patients for their experiences and knowledge.

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addressing the wrong member

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Ozelli, while I applaud the idea of waiting till asked, sometimes a person doesn't know what to ask. Sometimes they'll say, "I never thought of that."
I concur with the alternate hazard of too much information.

https://www.proteinatlas.org/ENSG00000171444-MCC/pathology/prostate+cancer Somatic After the biopsy the hard part is done. It only requires your request.
https://decipherbio.com/decipher-prostate/patients/decipher-prostate-overview/

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Speaking as a newbie (everything's happened since 3/2024) whose PSA spiked from 2.89 to 3.62 over a 15 month period, I was really glad my urologist recommended an MRI and a PSA retest. The PSA retest dropped to a 3.26 (false signal), but the 3T MRI showed an 8 mm lesion with a PI-RADS 4. Then I was really glad my urologist recommended I go out of town to get an MRI Fusion biopsy (which I was ignorant of at the time), with the idea being the MRI fusion biopsy gives the best chance of the biopsy actually sampling the lesion. I went to Mayo Phoenix for the biopsy, but they first gave me a 2nd opinion from both a urologist and a 2nd reading of the MRI from their radiologist who also classified it as PI-RADS 4. At that point Mayo also agreed an MRI fusion biopsy was needed. The reason I really wanted the MRI fusion biopsy was because if the biopsy came back as non-cancerous, I really wanted confidence they had sampled the lesion. However, the biopsy came back with multiple 3+3 = 6 and 3 + 4 = 7 samples, so I elected nerve sparing RALP in late June at Mayo Phoenix. The prostate biopsy after surgery found both Cribiform and IDC, indicating likelihood of aggressive treatment resistant cancer in prostate, but the margins were clear. So 4 months into this foray, I'm pretty glad I had access to a 3-T MRI (and not some older MRI which might or might not have imaged the lesion) and that I didn't delay getting the MRI or the MRI fusion biopsy. I'm also glad my medical insurance and financial situation afforded me an opportunity to go out of town to a recognized cancer center of excellence for the MRI fusion biopsy and the nerve sparing RALP. I'm coming up on 4 weeks after surgery and I'm virtually 100% continent. No idea on ED yet.

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@retireditguy

Speaking as a newbie (everything's happened since 3/2024) whose PSA spiked from 2.89 to 3.62 over a 15 month period, I was really glad my urologist recommended an MRI and a PSA retest. The PSA retest dropped to a 3.26 (false signal), but the 3T MRI showed an 8 mm lesion with a PI-RADS 4. Then I was really glad my urologist recommended I go out of town to get an MRI Fusion biopsy (which I was ignorant of at the time), with the idea being the MRI fusion biopsy gives the best chance of the biopsy actually sampling the lesion. I went to Mayo Phoenix for the biopsy, but they first gave me a 2nd opinion from both a urologist and a 2nd reading of the MRI from their radiologist who also classified it as PI-RADS 4. At that point Mayo also agreed an MRI fusion biopsy was needed. The reason I really wanted the MRI fusion biopsy was because if the biopsy came back as non-cancerous, I really wanted confidence they had sampled the lesion. However, the biopsy came back with multiple 3+3 = 6 and 3 + 4 = 7 samples, so I elected nerve sparing RALP in late June at Mayo Phoenix. The prostate biopsy after surgery found both Cribiform and IDC, indicating likelihood of aggressive treatment resistant cancer in prostate, but the margins were clear. So 4 months into this foray, I'm pretty glad I had access to a 3-T MRI (and not some older MRI which might or might not have imaged the lesion) and that I didn't delay getting the MRI or the MRI fusion biopsy. I'm also glad my medical insurance and financial situation afforded me an opportunity to go out of town to a recognized cancer center of excellence for the MRI fusion biopsy and the nerve sparing RALP. I'm coming up on 4 weeks after surgery and I'm virtually 100% continent. No idea on ED yet.

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Yes, pre-Dx 3T Multiparametric MRI and a TP fusion biopsy would be the way to go. Even earlier in the process a 4K test can be, and in my case was, informational.

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@gently

addressing the wrong member

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It was a general reply to discussion and information being posted.

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@toolbelt

Possible the most important is a second opinion on the biopsy.

If appropriate after diagnosis, Decipher

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Second opinion from nationally recognized cancer hospital is key. My second opinion was from MD Anderson. If you go on ADT meds & your PSA remains high get a PSMA scan at that time. I did and found advanced prostate cancer with mestatatis. My treatment was changed to docetaxel chemo. you can have advanced disease while on ADT.

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There are additional tests & calculations that help provide more information on the possible aggressiveness of the cancer:
> PSA Doubling Time – the number of months it takes for PSA to double. If the PSADT
is < 10 months, that’s a sign of possible aggressiveness. If it’s < 3 months, that’s serious.

> PSA Velocity – the change in PSA levels over time. A rapid rise in PSA may indicate
the presence of aggressive cancer.

> % Free PSA – PSA circulates in the blood in two forms – either attached to certain
blood proteins or unattached (“free”). If the PSA is high, but the % of Free PSA is low, it may be an indicator.

> Biomarker (genomic) test: Looks for genes, proteins, and tumor markers that tell
more about the prostate cancer. (Not the same as genetic testing.) These tests
include Decipher, Prolaris, OncotypeDX, and more.

> Genetic (germline & somatic) test:
—> Germline: Tells you which genes have been inherited by your parents. (Also, not only for other males in the family, but have the female relatives been tested for the same gene mutations related to breast cancer? They say that either gender can pass the gene mutations to the other.
—> Somatic: Tells you which genes you have acquired (mutated variants) caused by
cell mutations or environmental factors.

—> Additional Bone/CT/PSMA PET scans results.

With this additional information, along with the PSA, PIRADS, and Gleason, you’ll have a full picture of the status of his disease.

(Also, look in the MRI and biopsy results to see if the phrases cribriform pattern, extracapsular extension, seminal vesicle invasion, perineural invasion or intraductal carcinoma mentioned? If not, that’s good. Those are often indicators of more aggressive cancer.)

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@jc76

It was a general reply to discussion and information being posted.

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Sorry, jc76. I posted something after your response that should have gone to the original query. I always appreciat your posts. You can't really delete a whole post. The reference it to my own mispost. Thanks for the hug.

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