Newly diagnosed, extremely high PSA

[bezen]

Hello everyone, I'm new here and looking to share and learn. Here is my story:

I'm 58. I had symptoms of BPH for a few years but never had a PSA test until this October. No other symptoms or health issues.

Initial PSA 290 on Oct-3; test requested by regular doctor.

Oct-5 initial urological consult; new PSA 344. Diagnostic imaging ordered pending biopsy. In following week had prostate / pelvic MRI, abdominal MRI, chest X-ray and follow-up chest CT scan. Nothing found!!??

Biopsy Oct-15, all samples positive with most 4+3 and two 4+5. The report assigned my cancer to grade group 5.

Referred to another urologist for RALP surgery. He advised no surgery, radiation and hormone treatment. He's sure it has spread, even though wasn't found by imaging. He ordered an auxmin PET scan to see if it will find smaller areas. I've also had blood drawn for a BRCA genetic test.

That's where I am today; the PET scan is scheduled for this week. I've asked for the treatment plan but they want to see the PET scan results first.

This is a shock, but I think I'm coping well. I'm fortunate to have very good health insurance. I'm retired so no additional stress from work/life balance.

My wife found this site and urged me to read some of your stories. A close relative who's had a prostatectomy recommended the Walsh book. So I'm reading/learning what I can.

Thanks for listening.

[bezen]

I forgot to mention I also had a bone scan, negative.

The biopsy showed perineural invasion in about half the cores and one core showed extraprostatic extension.

Clinical stage: T1c

[Tall_Allen]

Pending the results of the Axumin scan, the therapy wit the best recorded results is brachy boost therapy - external beam radiation to the whole pelvis and a brachytherapy boost to the prostate. Let us know what the scan says.

[bezen in reply to Tall_Allen]

Thank you, I will look into it.

[henukit]

Looks like your got a good doctor, he is following through. Learn as much as you can before making decisions on treatments.

[bezen in reply to henukit]

Thank you, I'm pleased with level of organization and follow-up from the urology group I was referred to but I'm getting a second opinion from a teaching hospital this week. I want to make sure I've heard all the options.

[bezen in reply to bezen]

Henukit I also wanted to say I read your story and see similarities to my case. Thank you for sharing it's very helpful.

[Fairwind]

Gleason 9 is tough. Hit it as hard as you can with everything that's available to you...Walsh's book is good, read and learn...

[bezen in reply to Fairwind]

In my mind I'm kinda stuck on surgery to get out as much as possible then follow up with everything else available. But seems like surgery is not the recommended approach. I'm reading everything I can, thanks.

[Hidden]

If the Urologist is sure that it has spread and with a Gleason 9, it most likely has, what are you waiting for? Get your Urologist to recommend a Medical Oncologist who specializes in Advanced Prostate Cancer; preferably in research and tackle a probable systemic spread now. You will find this type of person at large medical schools associated with hospitals with research facilities.

Of course I am very biased toward aggressive treatment while the body is strong and the tumor burden minimal. And, foregoes the standard of care mentality of wait and see.

Concerning is age 58 and never had a PSA test? But that is another issue. 280 is quite high at an initial diagnosis. Very surprised that you did not have an immediate Lupron or Eligard injection. I am not a doctor, just some guy who was diagnosed back in 2003 with a PSA of 6.8 and Gleason 7 (4+3). I had Brachytherapy and 25 session of IRMT as my primary treatment. However, I became metastatic before the year was out. My Medical Oncologist did tell me that it mattered not which primary treatment I chose, it was too late to be effective.

He then introduced me to a term worth discussing with your guy, micro-metastases.

Best of luck and I wish you a successful treatment.

Gourd Dancer

[bezen in reply to Hidden]

I just had my initial visit with a top oncologist yesterday at a cancer center of excellence. We discussed treatment options but he needs to review my record over the weekend. I also had an Axumin PET scan today and he wanted to see those results. I expect treatment to start next week.

Yes, micro-metastases is a term i'm now increasingly familiar with.

Thanks,

[MarkBC]

I was in your shoes 5 months ago when I was diagnosed. 55 yrs old. Gleason 9. My first PSA was 103. My MRI and bone scan did show a few small tumours in lymph nodes, pelvis, spine, and ribs. Even before the scans, the urologist warned me that my high PSA likely meant the cancer had spread. I am fortunate to have access to some of the top prostate doctors in western Canada. I was started on ADT (Degarelix) immediately. I was advised that, because of the cancer spread, any possible benefit from surgery was outweighed by the potential risk to quality of life. I was advised to start chemo within 8 weeks of diagnosis which I did. I have finished the fourth of six Docetaxel treatments. PSA is now down to 0.37. I'm scheduled for a full body scan at the end of December and will begin 7 weeks of daily external beam radiation in January. It's not easy but I feel very confident that the doctors know what they are doing. There are lots of new research projects and treatments for advanced prostate cancer and more coming all the time. Good luck with your battle.

[bezen in reply to MarkBC]

I'll have a better idea of where I stand next week. My oncologist discussed a couple of trials; will see if I'm a candidate.

Thank you for your story. Best wishes.

[bezen]

Thank you, I will.

[bezen]

The results of my Axumin CT/PET scan are encouraging: it shows no sign of metastases. The urologist who ordered the test has done a 180 and went from being opposed to surgery to wanting to schedule ASAP. I'll see him tomorrow, but there is very little chance he will be the guy doing any surgery. I also want to hear from the oncologist first.