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5 Years Since Completion of Proton Radiation

Posted by brianjarvis @brianjarvis, 5 days ago

Amazing how after a few years this prostate cancer journey just slips my mind —> Yesterday was the 5th anniversary of the end of my 28 proton radiation treatments!

After over a decade of PSA screening (starting at 45y), I was diagnosed with low-grade, localized prostate cancer in April 2012 (Gleason 6(3+3); PSA 4.2). Was on active surveillance for 9 years, buying me time to thoroughly research this disease, diagnostics, and therapies.

Ultimately (at Gleason 7(4+3), PSA of 7.976 ng/mL, and Prolaris biomarker test indicating that I had “exceeded the threshold for active surveillance”), I had already decided on 28 sessions of proton beam radiation (which I had during 19 April - 28 May 2021) + 6 months (two 3-month injections) of Eligard.

Treatments were relatively uneventful; PSA & Testosterone responded as expected. Most recent PSA was 0.314 ng/mL.

Last night I mentioned to my wife about it being the 5th anniversary of the end of my 28 proton radiation treatments. She replied “yeah” and went back to watching her TV show. That was an appropriate response - I know that I have taken much effort during this journey in maintaining normalcy for her (and myself), and insulating her from the continuous grind - physical and mental - of test-after-test-after-test. Looks like I was more successful than I thought. That’s good.

Anyway, life goes on; I just got in my hour-long swim; will be chauffeuring the grandkids around today (since school is out), later on having date-night with my wife, and things will be much as they always were…..

Hoping that each of your journeys goes as well.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

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pesquallie | @pesquallie | 1 day ago
In reply to @rlpostrp "Congratulations. I have a few questions, because I - like you - will choose Proton Beam..." + (show)
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Congratulations. I have a few questions, because I - like you - will choose Proton Beam Radiation instead of conventional Radiation Therapy, "if" my cancer returns. I am 14 months post-RP with a pt3b cancer that was barely a Gleason 3+4=7 at biopsy, but has a 25-50% likelihood of recurrence "within" five years. I am still only 98% continent (I still have some leaks), and my sex life is ZERO. My urologist said he spared the neurovascular bundles necessary for erections and optimal urinary continence, but I haven't had an erection in 14 months.
My questions are:
1) What urinary side effects did you experience, if any? Any ongoing, now-lifelong incontinence, burning, etc.?
2) What sexual side effects have you experienced? Do you have permanent ED? Did any of the common meds like Cialis or Viagra help, or did you not need them?
3) Any rectal/bowel consequences whether temporary "during", Proton Beam therapy, "just-after", or "ongoing."
4. Any additional long-term side effects (energy, weight, behavioral, etc.)?
5. Did your insurance company pay for the Proton Beam Therapy? If so, who is your insurance provider? I am now on a Medicare Advantage HMO Plan that may not pay for it, if/when I need it.
I ask because I read enough of all of the life-long side effects of standard Radiation Therapy, such that I will never do it if/when the time comes for it. I read that it of course targets the area(s) and destroys the cancerous cells (if successful), BUT that it also "passes through" to healthy surrounding tissue (bladder, urethra, rectum) causing damage to those health tissues, to include the permanent, life-long urinary incontinence that a RO told me during a consultation visit I had. He also mentioned likely rectal/bowel issues. I decided right then and there, that I will NEVER have standard Radiation Therapy. I will drive as far as I need to drive, in order to receive Proton Beam Therapy, which of course goes "to", but not "through" the target cancer tissue. There is no damage to surrounding healthy tissue.
Your story validates my research on standard Radiation Therapy vs Proton Beam Therapy.
Thank you, in advance, for your reply to my questions.

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@rlpostrp

Doctors do not emphasize the loss of libido and erections which occurs in the vast majority of treated men because it might deter them from getting the recommended treatments. For me Lupron caused the most damage and at 10 months since the end of treatment I still have no erections or libido. Do not give up because some men do recover somewhat more than a year later.

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brianjarvis | @brianjarvis | 1 day ago
In reply to @pesquallie "@rlpostrp Doctors do not emphasize the loss of libido and erections which occurs in the vast..." + (show)
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@rlpostrp

Doctors do not emphasize the loss of libido and erections which occurs in the vast majority of treated men because it might deter them from getting the recommended treatments. For me Lupron caused the most damage and at 10 months since the end of treatment I still have no erections or libido. Do not give up because some men do recover somewhat more than a year later.

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@pesquallie True. Doctors are focused on treating the disease - which is appropriate, I think.

I shared with my urologist, radiation oncologist, and medical oncologist that both successful treatment and quality of life were equal priorities for me. That set the foundation for finding a treatment solution that would work for me.

With that knowledge, my medical oncologist emphasized that I would have to make a solid commitment: (1) to engage in robust resistance-training exercise, and (2) despite the libido being gone, to continue “doing it” despite the desire not being there, if I was going to maintain my quality of life while on Eligard. (Much of what goes on “down there” is about hydraulics so, keeping the blood flowing was important.) For me, that worked. Though the libido went to zero, everything still worked.

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guybe | @guybe | 22 hours ago

Wonderful news, thanks for the report!

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guybe | @guybe | 22 hours ago
In reply to @dpayton "@brianjarvis OMG the BP skyrockets when I get that text! HAHAHAAAA" + (show)
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@brianjarvis

OMG the BP skyrockets when I get that text! HAHAHAAAA

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@dpayton Yup, because of all this (stressful context of the measurement) it's hard to figure what my "real" BP is anymore. I'm going to get a good home BP device.

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