Warning-PC is not always slow growing; be proactive!

[HopingForTheBest1]

While it may be primarily true that PC is slow growing, which was also told to me my my then Oncologist, that was not further from the truth in my case. After my PSA had jumped from 4.0 to 5.5 in 4 months, then to 20 after just six additional weeks (back in June 2018), one day before my MRI fusion guided biopsy, his response was that PC was slow growing, he had many patients with PSA in the thousands and it should not be concerning. He also asked my why I was having the biopsy, which I proactively arranged for, not him. The biopsy resulted in 12 out of 16 cores positive and a Gleason score of 10. I then found a different Oncologist and immediately immersed myself in researching options.

I was subsequently (in January 2019) diagnosed as BRCA2+, from a Color Genomics genetic test, which made me genetically susceptible to aggressive PC. I wish the doctors had thought of having me tested sooner. Things may have been a lot different for me now, before it spread to the seminal vesicle, two lymph nodes, and lesions in the pelvic bone. This was all found a a result of my RP in November 2018, as part of my participation in the SIMCAP clinical trial. PSA started to accelerate after surgery, from 0.12 to 0.55 after a few months. Zytiga/Prednisone, which I was on for six months, was no longer effective after having initially lowered my PSA from 20 down to 0.12.

Also on Eligard and Xgeva.

Am now on Olaparib, a PARP inhibitor, used with positive results for BRCA2+ diagnosed PC patients. After 10 weeks PSA has dropped to 0.02. My Oncologist expects this treatment should hopefully be effective for the next 12-18 months. Until the next best treatment comes along, which I will definitely be on the lookout for.

Be proactive!!!

[cpcohen]

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. . .After my PSA had jumped from 4.0 to 5.5 in 4 months, then to 20 after just six additional weeks (back in June 2018), one day before my MRI fusion guided biopsy, his response was that PC was slow growing, he had many patients with PSA in the thousands and it should not be concerning.

<<<

Q: What do you call the person who graduated at the bottom of his class in med school?

A: "Doctor".

My objection to the very popular "Invasion of the Prostate Snatchers" is that it suggests using your first oncologist's kind of approach:

. . . Wait till the cancer progresses, so it's not curable with surgery or radiation;

. . . Then, use ADT and chemo to control it.

It's bad medicine, IMHO.

. Charles

[HopingForTheBest1 in reply to cpcohen]

Well said.

[Uxp_d in reply to cpcohen]

I am in the Uk and have had PC for eleven years, I have had RT which failed after two years ,I then had HIFU which also failed after 1year ,current treatment is 150 mg Balcalutumide, which taken for three months seems to work bringing my PSA down from 30 to 2.50,My currant PSA was 42, but I know I have Prosatitis and currently taking Trimethoprim 200mg I seem to have no more treatment option ,but I am nearly 79 years old.

[dentaltwin]

I'm not clear--had you been on active surveillance? How long before had you been diagnosed?

[HopingForTheBest1 in reply to dentaltwin]

I was never on active surveillance. Had enlarged prostate and slowly rising PSA issues for past 2 years, but no discussions about possibility of PC until 2 months before my biopsy in June 2018 when my PSA was accelerating past 4.0.

[dentaltwin in reply to HopingForTheBest1]

I can understand your frustration. The uros are slammed if they're too biopsy-happy. PSA obviously isn't foolproof as a screening tool, and they want to strike a balance between undue alarm and negligence. It took 4 months between my elevated PSA and my RP (and, unknown to me, my PSA had been rising steadily for 5 or 6 years).

I wish you all the best with your treatment.

[HopingForTheBest1 in reply to dentaltwin]

Thanks, and same to you.

[jazzy53]

Excellent post, and sorry you received such bad advice. I wish my primary care doctor had been more proactive. I'd always liked his non-alarmist approach to medicine, but he let me go four years without a PSA test and then, last summer, I finally did have a PSA which showed that my level had risen to 14 from a previous 1.5. After a biospy, I received a positive diagnosis and a Gleason score of 9 (4+5). I just finished 8 weeks of radiation and am ADT and just hoping my cancer stays at bay. So far, no metastasis on scans but my oncologist warns me that, given the aggressive nature of my cancer, there's a possibility that undetectable "micrometasises" may have seeped out of the prostate. Yes, be proactive -- even if it means eventually watching and waiting (which wasn't an option for me). Better to have information. I no longer see that primary care doctor, but this will be hanging over me for the rest of my life.