I am newly diagnosed with prostate cancer at age 62. It is metastatic. I am starting this thread to share my experiences as I begin a journey that has only one endpoint, but I have no notion of how long it can last at this time.
I do hope that my story, as it develops, can help others find a space to relax and breathe, to learn more about
this peculiar condition that is so very similar and so very different in each of us, to not feel isolated and alone in facing PCa, and maybe to help a fellow traveler as I have been helped from following this forum for two long weeks.
It is also a very good place for my distant family to check in and know what I am about
on this journey, and maybe, like me, they too will gain some comfort from the support and warmth and knowledge that flows through this community everyday. I feel like I am in the chute at a rodeo, sitting astride a massive and angry bull and having never been to a rodeo in my life, the chute is about
open- posters on this forum have, at the least, convinced me that I can hang on for a while, and they have told me how to do it.
So... a word about
the thread title. Fangorn Forest is place from JRR Tolkien's trilogy "The Lord of the Rings"- a favorite of mine. It is a very dangerous place, but there is good in it as well- the Ents live there, and although they may be slow to act, if they act at all, they are strong and clear in their purpose. While they cannot rid the world of dark forces, they can create a safe but temporary haven for those in need. For me it serves as a metaphor (better than the rodeo) for this journey.
On to my story.
TO PSA OR NOT PSA?
Yeah the USPSTF recommendation not to use serum PSA level to screen for prostate cancer makes sense; screening does not decrease the number of deaths from prostate cancer, and it does result in overtreatment that can have devastating consequences- that was recommendation was posted in May 2012- how ironic for me. Where I worked at the time, they offered free lab draws as part of a wellness program, and I could always include a PSA for $20-40. I did so each year, always seemed to bounce around in the 2s. August, 2012 I go see my GP for something, she includes the PSA since I had been following it at work regularly (and 2.x is kinda high for many, although in normal range...), and it comes up 6.24. She suggests I consult a URO. DRE normal, no symptoms, biopsy with 12 cores negative, some guys run "hot" on PSA, URO says lets check again in 6 months. May, 2013 and PSA = 6.16, no change, normal DRE, let's check again in 6 months. March, 2014 ( I seem to be about
2 months late for each URO appt) and my PSA is 14.6; time for another biopsy, 19 cores and still negative. BPH clearly, but no urinary symptoms of note. URO places me on Proscar to shrink prostate- if PSA goes down with shrinkage, that is good, if it goes higher that is red flag; also shrinking prostate could make it easier to find those cancer loci that biopsies are missing...
October, 2014: PSA = 10.5- good direction
June 2015: PSA = 6.51- yay!!
March 2016: PSA = 19.0!! ***....
Back in 2014, on my second biopsy, it was not common to use MRI to guide repeat biopsies to find cancer in prostates- now it is 2016, and is almost standard of care- clearly it is essential
MRI shows three regions of PIRADS 5 (high probability of cancer) and one regions of PIRADS 4 (signficant probability of cancer), median lobe pressing into bladder, probable extraprostatic extension at apex, suspicious looking iliac nodes bilateral.
Given the MRI report, doc could have hit these regions blindfolded (quite extensive throughout prostate); April, 2016: 31 cores and one week later, call to come see URO (on phone to MA "can you tell me the Gleason?", "yah, 10"- I knew to bring my wife to next appointment)
Biopsy showed many zones with Gleason 10, one with Gleason 8. URO sez "hardly ever see Gleason 10- this is unusual" - small solace in being anomalous.
OK- lets do CT of abd and pelvis with contrast and bone scan in April: no bone mets (yay!) no visceral mets (yay!) "extensive pelvic and retroperitoneal lymphadenopathy" (ouch!)- time to find a medical oncologist
May 2, 2106: Looks like we will do current standard of care for cases like mine: HT and chemo with taxotere up front; I ask medonc what does Gleason 10 mean with regard to transition to castrate-resistant condtion in HT, he sez it often occurs in 6-12 months in such cases; I start casodex to minimize flare when I go on Lupron 1 week later
I discover this place. I post (my first thread "new to everything"). Tall Allen suggests I look up a clinical trial for castrate sensitive cases where HT and chemo are combined with PROSTVAC. My medonc thinks that is great idea. I get info from NIH on Friday, collect my files and send them in, very organized, next Tuesday. Wednesday they call me back. May 24 I am scheduled for a screening exam at NIH.
Started on May 9; chemo on hold as it will be administered in trial, should I be eligible. So far no major side effects; I have felt better and seriously decreased ibuprofen intake for lower back pain since starting casodex
THE NIH TRIAL
NCT02649855 Docetaxel and Prostvac for Metastatic Castration Sensitive Prostate Cancer
This is a Phase II trial. Pt must be on HT and showing reduction in PSA as result. Two arms: Arm A is 6 rounds of docetaxel chemo followed by PROSTVAC primary and boosters over another 18 weeks; ARM B is PROSTVAC primary followed by boosters q 3 weeks with docetaxel given next day after booster for 6 rounds.
no placebo arm; the goal, as I understand it, is to explore whether giving immune stimulation (PROSTVAC) while killing PCa cells at same time exposes immune system to more PCa antigens, arming more T-cells to attack PCa tumors- it is a trial of sequencing treatment to best effect.
Now I wait for SE from HT and place my hope on qualifying for
for this trial. We shall see. Days seem a lot longer now- I try to be more active in entropy control in trying not to think, but thinking always happens and make the moments go slower- which must mean, relativistically, that I am in a singular frame of reference with velocity greater than that in the rest of the world- I think that's right, but sometimes these days I am a little foggy in the brain, and it seems harder to focus these old eyes..
enough for now
Age 62 @ Dx; 2012-2015: chasing floating PSA (range 7-14), 2x neg biopsies (12 and 18 cores), Proscar for BPH in 2014; PSA 6.5 6/15
Mar 2016: PSA = 19.5 -> MRI for guided biopsy: PIRADS 5(x3) + 4
Apr 2016: 31 core biopsy w 5 zones G10, 1 zone G8
Apr 2016:Scans = extensive pelvic/retroperitoneal lymphadenopathy, no mets elsewhere
May 2016: Med Onc referral; PSA = 29.5; Lupron 5/9/16
Post Edited (rockyfords) : 5/14/2016 1:08:52 AM (GMT-6)