Newly Diagnosed as "High Risk" and Confused Beyond Words
Greetings to All,
I am a 66-year old, newly diagnosed "high-risk" prostate cancer patient, that has only just begun the overwhelming research and learning processes associated with this wildly complex disease, and its many forms of potential treatment, based upon ones own unique biopsy/PSA particulars. Hence, I'm posting my story here in hopes of getting some meaningful feedback from others who may have faced (or are facing) similarly difficult decisions with regard to the plethora of treatment options available.
So, as briefly as I can, here are the facts that are most pertinent to my story:
In late 2015, my (then) primary care physician called for a variety of blood tests including a PSA test, that came back at 2.9 ng/mL, but oddly, nothing much was done about it (i.e., no alarms, no discussion, no referrals). Six-months later (March 2016), the PSA was up to 9.1 ng/mL, and I was subsequently referred to an independent urologist. However, a rather laborious and lengthy trans-oceanic family move put everything on the back burner for an extended period of time, causing a delay that has now come back to haunt me, because by late 2017, the PSA value had risen to an alarming 40 ng/mL.
Finally, in February 2018, I met with a second urologist who recommended and performed the long overdue biopsy. The biopsy procedure itself was comprised of six sets (1-6) of two cores each (12 total cores), and the results were reported by the pathologist as follows:
1: Right Base, 2 of 2 Positive, 4+4=8, Grade 4, 60% with carcinoma.
2: Right Mid, 1 of 2 Positive, 4+3=7, Grade 3, 20% with carcinoma. Note: Perineural Involvement Identified.
3: Right Apex, 1 of 2 Positive, 3+4=7, Grade 2, 8% with carcinoma.
4: Left Base, 1 of 2 Positive, 4+5=9, Grade 5, 10% with carcinoma.
5: Left Mid, Benign.
6: Left Apex, ASAP (Atypical Small Acinar Proliferation = suspected cancer).
Within 4-weeks of the positive biopsy report, CT and bone scans (but no 3T-MRI) were conducted. Both scans were subsequently reported as 'negative' for metastatic disease, and the prostate gland itself was classified as . . . "normal 4-cm in size without nodularity (no identifiable mass), but with asymmetric enlargement of the right seminal vesicle. No osteoblastic bone lesions and no lymphadenopathy or distant organ metastasis identified". However, my current urologist essentially dismissed the significance of both scans, saying that these two technologies each produce far too many 'false negatives' to be reliable, and that given the high PSA score of 40 ng/mL, the probability of at least "micro" metastasis to the surrounding bones and/or lymph nodes would be near 100%.
Three more months have now elapsed since the biopsy, with a stream of referrals and associated delays, and without treatment of any kind, but as expected, the PSA has continued climbing to nearly 70 ng/mL. Next week, I have two out-of-state appointments with well-qualified surgical and radiation oncologists, in hopes of gaining their respective opinions on the best approach for me moving forward (i.e., surgery, EBRT, ADT, etc.), and just this past week, my very first visit with an oncologist of any sort (a local medical oncologist), led to the stern recommendation that I at least begin Lupron treatments, effective immediately.
My own inclination regarding future treatment is rooted in what would seem to be sheer common sense, and that is, to have immediate surgery (radical prostatectomy) to remove the primary source of the cancer, followed by secondary treatment with radiation, chemo, ADT and other therapies, as necessary. However, several local urologists/oncologists have suggested that I will be unlikely to find a surgeon willing to perform the surgery given my age, the high PSA result and the rather brisk so-called "PSA doubling time".
So, there you have it! Needless to say, its an incredibly serious and unnerving set of circumstances, but its also incredibly 'confusing' in its initial complexities. I and my family (including several adult children), are all frightened beyond words, and personally speaking, I'm struggling mightily with the decision(s) on how best to move forward. Accordingly, I would consider any and all feedback from experienced others here on the ACS Prostate Cancer Forum as "priceless".
Thanks to all for your time and consideration, and my very best wishes for success to all who are afflicted with this miserable little malady.
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