While it may be primarily true that PC is slow growing, which was also told to me 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.
Again based on my own research and confirmed by several doctors, I 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!!!
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HopingForTheBest1
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Absolutely agree with everything you have said. Especially if you or others, as my husband had, have the BRCA2 gene. Glad you are proactive and wonderful news on your test results and treatments! 👍
I am continuing to educate myself on this disease even after his passing to hopefully teach others that proactive is the best approach. And also that no symptoms doesn’t always mean men are ok.
My husbands warning signs were not the usual (as in enlargement of prostate, rapid PSA elevation or usual slowdown of urination). His were the sudden onset of constipation and failure to release bowel movement. Only after that test did his urethra close.
So in staying with this group I am educating myself and making sure his son is proactive as well as friends who are just being early stage diagnosed.
One is with a simple saliva test from Color Genomics (color.com) which is not costly at around $200.
The other is with a sample of your prostate tissue from Foundation Medicine, which is very costly at around $4000 unless you get approved for their financial assistance and get up to 90% discount.
I did both. Not sure if blood tests are an option. Talk to your Oncologist.
I knew in advance that my removed tissue was to be kept for research purposes, which I had agreed to and signed papers for.
Hi, my story is very similar to yours. I had read and been told cancer is slow growing and once diagnosed you had plenty of time to plan ahead and decide on treatments and action plans. I was diagnosed as a gleason 10 but just thought it was a figure indicating my cancer was a fairly bad one but could be sorted by the treatments already on offer and kept under control. My oncologist didn't adequately put across what a serious situation I was in. The cancer just shrugged off treatment with Docetaxol and xtandi and has just kept on growing. I am presently waiting for tests to see if the cancer has any of the gene defects which might make it susceptible to the parp and checkpoint inhibitors, they are trialing at the moment.
People should be made fully aware that in certain situations cancer is not the slow growing disease many of us are led to believe it is. Words fail me on the ignorance of some of the healthcare professionals we put our trust in.
I applaud your post on bringing awareness to the subject especially to those just starting on this harrowing journey, and may I offer my congratulations on your wonderful response to Olaparib, long may it last!
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