I have a family history of prostate cancer on my father's side, along with a history of acute prostate infections and UTI's on my mother's side. What a great mix right? :-)
My father had prostate cancer diagnosed just under 60 years of age (he is turning 66 this year - 2016), and chose open RPP at Johns Hopkins - Brady Urological Institute (JH-BUI). His older brother was diagnosed with prostate cancer in his late 40's when mustering out of career Navy back in the mid 90's, and chose LDR brachytherapy with EB. Both are still cancer free, both still suffer from some expected side effects of their chosen procedures.
I started tracking my PSA in year 2000 since I had a family history. Back then, at the tender age of 29, my PSA was already 4.4! Went through the usual round of antibiotics, PSA was then 3.8. Had a typical random 12 core biopsy, all negative. Over the years I've been tracking a very gradual increase in my PSA up to 6.6 a present - slow velocity, and I've had a few repeat biopsies, including a saturation biopsy along the way, all negative for cancer.
Finally in 2013, not too long after my father had had his prostate removed, I chose to be evaluated at JH-BUI. Underwent my first MPMRI, along with the requisite targeted biopsy based upon the MPMRI scan results. In November 2013, I had one of 14 cores come back positive, Gleason score 6, less than 5% in the core, with PSA at 5.8. No grading of cancer at that time. THey recommended RALP at JH within 1-2 years - not because the cancer would spread quickly - more because if I waited too long I'd feel fine and would convince myself not to pursue treatment. I chose active surveillance.
Took the year and read a number of books on prostate cancer treatment, especially on proton therapy, which appealed to me because of the non-invasive aspects and the many personal testimonies of minimal side effects and decent cure rates. Continued education and research on the Internet as well. PSA remained stable for the year.
I then decided to head to the NIH-NCI and see if I could qualify for a couple of clinical trials for focal ablation options like HIFU or laser ablation. Ended up down at the NIH for a 3T MPMRI in November 2014, then underwent a special targeted fusion biopsy process in May 2015. PSA up to 6.5. 6 of 18 cores positive for cancer, some with much higher core percentages, all Gleason 6 fortunately. The bad news was that one of the 6 cores positive for cancer could not be seen on the MPMRI, which meant any focal ablation option would miss that area by design. The doctors at NCI recommended against focal ablation and to consider full glandular treatment.
Next stop was a consult at Penn Medicine for Proton therapy over the summer of 2015, which is where I was leaning all along, though I've always had a general concern about any beam therapy damaging healthy tissue on its way to the targeted area to be irradiated. The Radiation Oncologist at Penn Medicine recommended I seriously consider RALP, but I've kinda always known surgery wasn't in the cards for me. She then asked if I had ever talked to anyone about brachytherapy options, which I hadn't, so off I went on referral to Fox Chase Cancer Center.
I consulted with the chair of RO at Fox Chase in October 2015 - Dr Eric Horwitz. Great guy. He walked me through all of the options - spent well over an hour with me, staged my cancer, etc., and recommended I consider HDR BT monotherapy based upon my scans and history and my desire to maximize quality of life via minimal side effects while also not sacrificing long term cure rates. Off I went from Fox Chase, for the first time having questioned Proton therapy as my default.
In December 2015, after researching HDR BT several times over, I'm now scheduled for HDR BT monotherapy at Fox Chase On Feb 17 and Feb 24, 2016 (two fractions a week apart). It's been a long journey for me over these past few years as I've considered the various treatment options, and I'm apprehensive as my treatment dates are now only a few precious weeks away, but I'm feeling good about my choice. HDR BT is a bit more invasive than any beam therapy, but the amount of time any healthy tissue in my body is exposed to radiation is minimized while maximizing irradiation of my prostate gland and in particular the tumors within my gland.
I was hopeful that I could employ active surveillance long enough for other more innovative clinical trials to progress sufficiently for those of us with early onset low stage prostate cancers, such as immunotherapy options, or newer light/heat/oxygen based focal treatments that can target prostate cancer tumor cells specifically, while leaving other healthy prostate tissue untouched, but I don't want to take the risk of waiting any longer. Hopefully these types of innovative new treatments will mature over the next several years and offer those of you who are newly diagnosed with prostate cancer focal treatment options that dramatically minimize potential side effects while offering acceptable cure rates or ongoing abilities to manage tumors on a case by case basis.
I will post again when I undergo treatment the second half of Feb 2016 and report on my prognosis and any short term side effects from the HDT BT procedures. Many thanks!
I underwent HDR-BT monotherapy at Fox Chase Cancer Center as planned in late February. Had the expected short term acute side effects within the first 15-30 days but things quickly calmed down after the 30 day mark.
I'm now a little over 90 days out from my primary HDR-BT treatment at FCCC. I'm still using Flomax once a day, for reduced flow, but outside of that, I'm good overall. A couple of observations:
1. Orgasm can be slightly painful - still more than worth it, but it's there. The start of the orgasm feels pretty close to what it used to feel like, then I get some burning/discomfort about midway through. I still have dry orgasms - which is pretty much par for the course after BT from what I've read - especially while on Flomax. I've also seen some comments about pain during orgasm that eventually resolves over time - so I remain hopeful that this stage is temporary. No problems in the ED department at all so far I'm happy to say - I had no problems with ED previously since I'm only 44 years old just to be clear.
2. Still have some bowel irregularity at times. Nothing that can't be managed though. No blood in my stool or anything along that line thankfully. Again, I've read that this resolves over time as well. I'm still only 90 days out though it seems like more time has passed which is a good thing I think.
I'm planning on staying on the Flomax through six months and will then taper off the flomax as well provided my stream has enough flow. My first follow up appt and PSA is scheduled for June 28, so I'll post again after my first follow up appt.
Overall, I'm very happy with my treatment experience at Fox Chase Cancer Center and I pray for good initial PSA test results on June 28, 2016.
Sorry it has been so long since my last update in June 2016. Consider this my annual June 2017 update. My PSA has fallen from a high of 6.6 in February 2016 to 2.01 in March 2017 (almost exactly a year out from my HDR-BT procedure). I'm due to return to Fox Chase for a follow up appointment next week and am taking another PSA test later this week prior to my appointment. I will try to remember to report the updated PSA results here next week as well.
All of my short term symptoms that I documented in my last update resolved within a few months of the initial procedure. I do still have minor issues with prostatitis (which I had prior to treatment as well), and am still taking Flomax once daily (down from twice daily), and have noticed my erections are not quite as firm as they once were, but I have also gained some weight since last year around my midsection so it's hard to nail down the exact source - and I'm not getting any younger either, so probably a combination factors. To be clear, I've never had any issues maintaining an erection sufficient for intercourse, I've simply noticed I don't feel quite as engorged as I did in times past. Overall, I'm very happy with my treatment decision, and the side effects after 1.5 years are very minor and don't really impact my daily life at all. Hopefully I will continue to see my PSA trend down over the next couple of years and reach a nadir of 0.5 or less at that point. I feel very blessed to date and hope and pray for durable remission moving forward.
Just got my latest PSA test result back today. 0.8 ng/ml. So, PSA history as follows:
6.6 Feb 2016 (Tx time)
6.0 Aug 2016 (6 months out - prostatitis evident)
2.1 Feb 2017 (1 year out)
0.8 Aug 2017 (1.5 years out)
Hope to continue to see a downward trend. Next PSA test in six months time.
Craig's e-mail address is: cjbsmb1994 AT yahoo.com (replace "AT" with "@")