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DiscussionMy Story So Far - 53yo / PSA 130
Prostate Cancer | Last Active: Apr 22 7:53pm | Replies (28)Comment receiving replies
@brianjarvis
Some thoughts:
Have you had a biomarker (genomic) test like Decipher, Prolaris, OncotypeDx, or one of the dozen others in order to look for genes, proteins, and tumor markers that tell more about the prostate cancer?
Have you had a genetic (germline) test to see if you have inherited any prostate cancer-related gene mutations from either of your parents. (like BRCA1/2, ATM,
CHEK2, HOXB13, MSH2, etc.)?
Lupron often takes quite a few weeks before you experience side-effects. Are you tracking your testosterone level? That’s what will correspond with the Lupron side-effects kicking in.
You mentioned your concern with “radiation only can lead to bowel issues down the road, which I want to avoid at all costs.” Remember that what radiation doesn’t hit won’t be impacted. I asked my radiation oncologist to work with the team dosimetrist and physicist to show me how much radiation entry dose, scatter, and exit dose might affect nearby otherwise healthy tissues and organs. We then focused on avoiding those collateral impacts. (I’m now almost 5 years post-proton radiation treatments and have experienced no bowel issues.)
Also, the surgeon’s comment about “Radiation hits a larger area and is more prone to unwanted side effects” might be a valid point. (Both radiation and prostatectomy are “full organ” treatments.) The key (once again) is for the radiation to only hit the prostate. With today’s modern radiation technology and techniques, that can be accomplished.
My urologist (a surgeon) also told me that he “clearly believed he could get it out, and gave me a xx% chance of saving the nerves,” but added that he “would only know that for sure once he got in there.” That gave me pause….. (Also, remember that “saving the nerves” is medical-speak for possibly 100% of both nerves, or 100% of one and none of the other, or 75/25, or 50/50, or 25/25, or….. They really have no sure way to know until they get in there. Even touching/moving the nerves sometimes damages them.)
My radiation oncologist and I spent much time researching all possible short, medium, and long-term side-effects from radiation (see attached charts), and then spent time discussing methods to minimize or avoid each one.
You also mentioned that “If I did radiation alone, any subsequent prostatectomy that would be required in an emergency would almost certainly cause troubling side effects with continence etc.” As it turns out, that has some truth to it (if a salvage prostatectomy were the only salvage option), but it’s is old-school thinking that doesn’t consider modern treatment techniques. (And there are rarely “emergency prostatectomies.”)
If there is local recurrence after initial radiation, choice of treatment would depend on the nature of the recurrence; there are other options - focal therapy (e.g., cryo), brachytherapy, SBRT (because they’re each very targetable), and yes even re-radiation can be done in some cases. So, I wouldn’t let the old “no options if recurrence” philosophy change my initial treatment decision.
As for your doctors having “…almost never seen a PSA of 130 with no spread,” remember that ~15% of prostate cancers are PSMA-negative and won’t show up on a PSMA PET scan even when prostate cancer is known to be present. Something to consider and discuss with them…..
As you alluded earlier, removing it brings no statistically significant success over radiating it. In fact, if there has already been metastasis - which you seem to think that there has been microscopic spread already - then, that would make your treatment decision fairly straightforward.
(In my case, I was diagnosed with low-grade, localized prostate cancer at 56y/o, spent 9 years on active surveillance (having much time to thoroughly research my treatment options), then chose to have proton radiation treatment at 65y/o. That was about 5 years ago.
For me, successful treatment and quality of life were equal priorities. That understanding set the foundation for my radiation oncologist, medical oncologist, and me coming up with a sound treatment plan. And I never lost potency.)
Yes, there is certainly a lot to learn and digest, but in the end you have to make the best decision for you (because you’re the one that has to live with the decision).
Wishing you the best with your decision.
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@brianjarvis
I'm considering Proton therapy. May I ask how many sessions did you do and was hormone therapy added? Both RO's from Centers of Excellence recommended a Brachey boost along with Proton (5 sessions) or IRMT (23 sessions)