Still Frustrated

[Willie51]

My prostrate cancer struggle continues. As I’ve posted, it began 5 months ago with higher PSA numbers in an annual physical. I live in San Diego where there is world class medical facilities and I’ve seen the most highly recommended doctors. Yet now , I’m diagnosed with a very aggressive (Gleason 9) cancer that FINALLY a PET scan shows has spread to lymph nodes (mostly pelvic area but one in my neck). No bones or organs thankfully. I’m seeing two doctors. One , a surgeon , says he doesn’t recommend surgery because at my age (73) risk of incontinence is very high. The other doctor wants to start me on Abiraterone, then Lupron for 2 years, then 6 weeks later radiation for 5-8 weeks. But right now the meds are being held up by some insurance technicality on the doctor’s end. So bottom line is I’ll probably get the right treatment soon. But at this point how can you not think this could’ve been caught way sooner if the tests were expedited!?! And most importantly for others, please don’t ONLY listen to those that say “don’t rush, slow growth, take plenty of time,” that seems riduculous if your cancer is aggressive and you get to where I am now.

[Tall_Allen]

Your cancer spread to lymph nodes many years ago. Like all biological entities, metastases spread exponentially, which means very slowly at first, but picking up speed as they progress.

[Willie51 in reply to Tall_Allen]

Thanks for all your advice TA. I really appreciate it. I sent an earlier message but now can’t find it. Sorry if this is a repeat. I’m seeing my first onocologist Dr. Konijeti at Scripps Clinic (of 2) this morning. Per my latest PET scan cancer has spread outside prostate to pelvic lymph nodes and 2 lymph nodes near clavicle. I think this is a distant spread. I’m also seeing a radiation onocologist today. My PSA is still only 8.4. Biopsy showed cancer in just prostate. MRI showed no evidence of spread beyond prostate. Intraductal and perinueral are involved somehow. My medical onocologist (Rana McKay @ UCSD) earlier thought it hadn’t spread and was very optimistic about treatment , even cure. I understand that now it’s changed. I see her on Monday. In your opinion what is my best path to treatment now?

[Serene9]

I get your frustration, and all the what ifs, etc. I must say I find that being able to talk about an experience - that I find to be very personal and traumatic - with people who share my experience a great help for processing everything that's happening.

I picked up an elevated PSA (4,05) at my annual check up in December, went to see the urologist who suggested a scan. The scan was done late December and revealed a small lesion. This lead to a biopsy in January, localised Gleason 6 diagnosed, brachytherapy done 6 Feb. Both the urologist and oncologist are highly regarded, and their consultations were professional albeit clinical. Sure, side effects and the treatments were made clear, post op process explained in full etc. I just didn't think that unless you have been in my shoes, no amount of professional experience and expertise can relate to what i"m going through.

The big void for me was emotional support, which I found at a monthly online support group. There we can talk about the issues that none of the clinicians wanted to get into detail about, such as the practical aspects of erections (or the lack thereof), sex drive, masturbation, orgasm, ejaculation, intimate relations, the emotional and psychological effects of not only the diagnosis but also the treatments, the road to recovery / life without a prostate etc etc.

Wishing you strength and peace as you embark on your treatment regimen.