Posted Today 12:11 AM (GMT 0)
Hello Everyone,
First I want to say thank you for providing advice in the past and in the form of a place where I can simply go and read of the experiences of others. Reading here took me to Patrick Walsh's book on Surviving pCA. I had "looked at" this book years ago but did not devour it as I have done now as the curse was not directly affecting me.
As a molecular biologist (now away from the bench) and former med tech, the biology of this disease has baffled the hell out me. It is also fascinating - until you get it.
In 2004 my brother died of undiagnosed metastatic pCA. He was a construction worker who had some vertebral fusions, was on disability and beginning to experience severe back pain. Prior to this there was no history of pCA in the family, though my sister had stage III breast CA back in 1995 (after surgery and aggressive radiation and chemotherapy, she is alive today). My brother had a PSA was 622 when he was diagnosed and was dead in 6 months. I will never forget seeing his x-rays and the pea sized tumors in his vertebral column and those the size of golf balls in his pelvis. To this day I feel selfish that I thought about myself. I hope I will never have to feel what he went through. Family and friends took care of him until the very end.
In 2006 my 56 year old brother was diagnosed with pCA. I still don't know all of his details but he had the DaVinci robotic procedure done in 2007 at Tulane. He recovered potency in 6 months and has very good urinary control today. In addition, both my mother and sister have thromobcytosis, a high platelet count - kind of leukemia of platelets. Genetically, and perhaps environmentally, something is going on in this family.
In 2007 I decided to go to a urologist at Fox Chase CA Center to monitor my situation. PSA remained stable until 2010 when it began to creep upward. From 2007 on Dr. Greenberg put me on finasteride, which you may know blocks the conversion of testosterone to 2 DHT in the prostate (as well as hair follicles). The reason for this, he told me, was to slow any potential development of pCA, which given my history seemed inevitable.
In 2011 my PSA crept up to 4.8. I have since found this number should be doubled if you take finasteride, so it is really 9.6. A brutal biopsy in January 2012 revealed Atypical Small Acinar Proliferation (ASAP - or just "atypical" in 2/12 cores). The follow up biopsy in April revealed a slight drop in the PSA.
My October check revealed the PSA skyrocketed to 10.7 (21.4 b/c of the finasteride). At that point I decided to switch doctors, primarily b/c of the fact that Fox Chase Urology is not even ranked. I had actually made up my mind to switch before that as I found the January biopsy very painful and I had rectal bleeding for 3 days and clots in my urine. From what I had read this happens sometimes but this seemed particularly bad. I just did not feel comfortable with the Doc and wanted someone more recently trained (he is no spring chicken - I feel bad about saying that but......) I was going to go to Johns Hopkins, #1, but found that the University of Pennsylvania (#14) has the best team in the area and the #1 surgeon, David Lee, who I was able to get into see. The PAs that handle the day to day seem very good.
The November biopsy revealed no gross abnormalities based on ultrasound and only 1 of 12 positive cores (and only 7%). Gleason grade is 3, so Gleason score is 6. It was strange that the original atypical / ASAP lobe was negative, but pCA is "multi-focal."So that all sounds good but the high PSA is scary. Yes I know they say PSA should be taken with a grain of salt.
Another troubling thing is the Finasteride. I have read that although the drug may lower the incidence of pCA (that is may....and that is dubious) when it does come it is often MORE aggressive. Frankly, I am aghast that any urologist would prescribe this for prophylactic reasons. Truth be told, I am really pissed. I'd rather be bald (fact is the hair has not come back.... I think it just has not fallen out as fast).
According to the Partin tables, statistically, this score with this PSA, gives a 70% probability of the CA being contained to the prostate. That probability drops to 42% if the Gleason goes up to 7, which it almost always does in the pathology report following surgery.
So, tomorrow is the big day where I go decide what to do with Dr. Lee at Penn. From what I understand, age 51, in decent health and with my history I feel my best (and really only) option is surgery. Yes I know others opt for radiation but I want these cells out of me. I'd like to be cured, not treated. I think I can deal with the dry orgasms, now they are like water anyway with the finasteride. Think of all the money that will be saved on tissues! (God, remember when we were teenagers? LOL). The doc has a 90% + success rate with restoration of potency and continence. I'd like to have this thing out of me and have the seminal vesicles and area nodes negative. And please spare my nerves.
Thanks for reading. Boy did I go on and on. Any thoughts or insight is of course welcome.
Christopher
PS. Today a valued colleague came to me with support. I found out he had malignant melanoma 6 years ago. I feel badly for him, as we both know what that means. I thought, maybe my situation is not so bad. Many of you are in tougher spots than I ..... there goes my guilt.... (why was I raised Catholic?)
T1C (non-palpable, high PSA and positive needle biopsy)
PSA in December 2011 - 4.8 (while on finasteride - so double the number)
Biopsy 2012 - 2 atypical specimens (ASA) in 12 biopsies
PSA in April 2012 - 3.9 (double b/c of Finaseride)
PSA in October 2012 - 10.7 (double b/c of Finasteride)
Biopsy in November 12: One positive core - 7% - Gleason Grade 3 (different area than the ASAP of Jan) Gleason score 6.