Prostate Cancer Survivors

 

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This forum is for the discussion of anything to do with Prostate Cancer.
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Setting the Record Straight 4/25/19

Following my diagnosis of recurrent cancer, a few folks have asked,"If you had it to do over, would you choose proton therapy?" My answer is an unqualified, unmitigated, "YES." My initial research indicated several available options demonstrated a high degree of success. Proton therapy and surgery appeared to be more effective when compared to brachytherapy, cryosurgery and various types of photon therapy. No less effective than the other options proton therapy stood out because of fewer, less severe side effects. A high success rate combined with minimal side effects appealed to me then and strikes me as being equally persuasive to this day.
A few weeks ago an internet friend informed me that of the several thousand prostate cancer patients treated at UFPTI since opening in 2006, I am one of three individuals whose proton therapy proved unsuccessful. UFPTI issued a press release this November which contained the following stunning success-ratio statistic:
"Five year progression free survival rate of 99 percent in low-intermediate-risk prostate cancer patients."
If only I could locate an equally effective means of treating my recurrent cancer.
If I made a mistake along the way it was not securing a second opinion on my original biopsy as recommended by Marckini et. al. Although, before initiating treatment, UFPTI confirmed my original Gleason score as being 7(4+3). At a much later date using the same set of slides Mayo Clinic concluded my score was actually 8(4+4).The Mayo clinician who called this to my attention speculated that had UFPTI concluded likewise my radiation may have been preceded by one or more doses of Lupron which may have prevented the recurrence.
Why the soul searching and hand wringing at this point you might wonder? Well this exercise represents my attempt to set the record straight. In so doing I hope to enable others who follow in my footsteps to make a good decision for themselves

Re: Setting the Record Straight 4/25/19

G'day Don,
Each of us old PCa warriors made our treatment, or even treatment choices, based on what we perceived too be our best option all those years ago. We all did our due diligence that may have ranged from devouring Pub Med PCa papers en masse, as was the case with me, to perhaps just having a browse of what other guys, of a similar circumstance did, as documented in their stories on here. Contrast the paths Terry, you and I took Don? We all had an unwavering belief that our pathway was the correct one for us. And really was it? I would tend to say yes for two reasons. First it depends what your goals were at the time. Terry if you recall wanted 20 years of not scumming to PCa. He just about made it at 18 years if I recall correctly. I wanted 10 years of disease free progression. I actually got 13 years. And despite your well documented blog journal entries Don, you are still with us, and may that continue for as long as you wish. And the second reason is that even if we did not make the most appropriate choice, how many of us would fess up to it anyway?

best wishes Don,
John Bonneville



Re: Setting the Record Straight 4/25/19

Always good to hear from you John. It occurs to me appropriateness is determined by a number of factors including form of PCa, the country in which we live and our financial constraints. It would be quite the blessing if an affordable sure cure were available to each and everyone of us. Not in our lifetime John.
I would like to think, and am inclined to believe, you, me and Terry made the right decision for ourselves and our circumstances.
Here's wishing you and yours all the best.
Protondon

Re: Setting the Record Straight 4/25/19

Well Don our understanding of the body's immune system responses and how to manipulate them is just around the corner, but hey I am from the past and very happy living there. Concerning choices, there was a fellow who posted here a long time ago. He was a local from Vanuatu. At that time no active medical treatment was available in his country. He was diagnosed in Australia. So he chose what was the best option for him. "He consulted the local Witch Doctor". Try as I may, I cannot recall his username on here. Do you remember him Don? Wonder if he is still about?

best wishes
john bonneville

Re: Setting the Record Straight 4/25/19

Hello John -- I hope you have been staying safe and healthy. The only YANA Survivor Story that includes the term "witch doctor" is from Tom Smith (although he signed his story as "Jim") -- please see: https://yananow.org/display_story.php?id=1659. That story includes some rather strong statements that may or may not be accurate.

Best Regards,
Mark

Re: Setting the Record Straight 4/25/19

Thanks for having a look Mark but that is not the fellow I am thinking of. Perhaps he posted on the original forum.
John Bonneville

Re: Setting the Record Straight 4/25/19

It's highly unlikely but not impossible the medical community will develop a solution to our problem while the two of us are still around to reap the benefits.
Cannot recall our fellow PCa Warrior who consulted a Witch Doctor.
It's conceivable the administrator of this forum can locate the discussion you have in mind...he can be contacted at mfreedkin@yahoo.com.

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