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This member is a YANA Mentor This is his Country or State Flag

J C and J live in Idaho, USA. He was 44 when he was diagnosed in November, 2009. His initial PSA was 2.80 ng/ml, his Gleason Score was 7, and he was staged T1c. His initial treatment choice was External Beam Radiation (Proton Beam) and his current treatment choice is Undecided. Here is his story.

Because my father has prostate cancer, I started PSA screenings in my early 40's. When my PSA rose from 2.0 to 2.8 in a year, and my urologist felt a small "woody" lump with a DRE, I underwent a biopsy. The local pathologist scored the biopsy a 3+3=6 with 3/5 sites on the right positive and 1/5 on the left, staging T2C. I asked for a second opinion from Johns Hopkins, who scored the biopsy a 3+4=7.

My urologist recommended brachytherapy with Iodine pellets, but encouraged me to look at all my options. I was a little reluctant to do brachytherapy, because this same urologist had treated my father that way and it had not been successful. My father-in-law is a former proton patient, with no cancer or side effects eight years post treatment, so I added that treatment option to my list to investigate.

I'm an engineer, and I thoroughly researched every option, including downloading and reading stacks of research papers. I even corresponded with some of the authors to clarify my understanding of their research. The conclusion I came to, was that for my particular situation, there were three or four treatment options that would give me similar "cure" statistics. However, these options had vastly different risks for side effects. I'm a young man for this disease, and if cured, will have to deal with those side effects for a very long time. I was also pretty clear from my research that the skill of the doctor was a major factor in the success of any given treatment. I live in a small town, so that meant I'd probably have to choose treatment outside my hometown.

I quickly ruled out surgery because of the potential for serious side effects. The only advantage I could find for surgery is that I would know rather quickly if I was "cured". My concern with brachytherapy was the significant potential for seed migration, meaning a portion of my prostate may not get treated at all. External radiation appealed to me because it's a better option for treating the margins around the prostate gland, thus killing any cancer cells that may be beginning to migrate or escape the prostate gland.

I looked at several external radiation treatments, including IMRT (Intensity- Modulated Radiation Therapy), CyberKnife®, proton, and ProstRscision®. In the end I chose proton radiation, because it was the least invasive, with the least risk of side effects, and a treatment protocol that treated a slightly larger volume around the prostate gland with the best precision.

Proton treatment started in April of 2010 (the same day my father started chemotherapy for his metastasized prostate cancer) and finished in June 2010 at Loma Linda University Medical Center in California. I exercised every day of treatment and hiked Death Valley, the Mojave Desert, and several beach areas on weekends; the 45 daily treatments didn't slow me down at all.

My first followup in October 2010 showed that my PSA held steady at 2.7, possibly due to infection. A followup is planned in three months. The DRE did not detect any tumor and thus far the only side effect has been some soreness in my hip joints, which is gradually diminishing. I have NO urinary side effects; I rarely urinate at night, and can hold my bladder for many hours if needed. Also, NO rectal or erectile side effects either.

UPDATED

January 2011

As of December 2010, 6 months post proton treatment, my PSA has dropped in half -- right where it should be at this point.

Still have sore hip muscles occasionally, but absolutely NO other side effects. I take vitamins C, D, & E daily which I read in a peer-reviewed research paper can help radiation treatment recovery. I also am taking flax seed oil, resveritrol, green tea, turmeric, low dose aspirin, pomegranate extract, and lycopene supplements -- all have positive track records for post radiation prostate cancer survival per peer reviewed research -- and eating better and exercising.

This disease won't beat me.

UPDATED

January 2012

I had a serious scare this summer -- my PSA spiked from 1.4 to 9.0 in two months! Bone scans and Cat scans were negative so the doc put me on antibiotics (Cipro) for a month. After the Cipro, my PSA went back down to 1.1. In those few days between getting PSA results and seeing the doc, I concluded my treatment must have failed.

I found nothing in my research about infections causing a 10x PSA spike. So here is one data point for any others in that situation -- infections can cause a massive PSA spike! [Yes indeed they can - I saw one report of a PSA hitting over 300 ng/ml from an infection and PSA is NOT prostate cancer specific - see PSA 101.]

UPDATED

February 2013

My father passed away from the effects of his prostate cancer this past spring at 80 years old, 11 years after initial diagnosis. While the various drugs he took probably extended his life, and it was generally quality life, those drugs also probably led to the heart attack that finally took him. All in all, it wasn't a bad way to go and I hope my turn to pass is as straightforward as his was.

My father-in-law also passed away this past year at 86. His prostate cancer was cured by proton radiation completely, but mesothelioma got him from his time in the Navy most likely. He passed pretty quickly also and has had quality life nearly to the end as well.

My PSA still is lingering in a range between 1.0 and 2.0. In the past year I've noticed a few of the typical prostate type issues starting to emerge -- weaker urine stream, more straining, etc. I'm hoping that is the effect of scar tissue replacing prostate cells that are dying as the cells try to divide. I'm also noticing more rectal issues. I seem to have a lot of gas all the time, and occasionally some minor problems with rectal control, probably from the radiation. I still have soreness in my hips, which I'm coming to believe might be due to circulation issues in the muscles that were irradiated. Having said all that, my side effects from proton treatment are very minor. I almost never have to get up during the night to urinate for example. So far so good!

UPDATED

April 2014

PSA has dropped well below 1. It appears the cells damaged by radiation are dying en masse now, and I'm hopeful that my cancer is cured. The downside is that my hip pain and weakness is also getting worse, and is starting to affect my ability to do physical activity. If that's the price I pay for curing my cancer, I can deal with it. =)

UPDATED

September 2015

I've passed the 5-year mark with no issues to speak of, other than I seem to be susceptible to urinary tract infections. Frankly, I've been too busy working a day job and starting a couple of side businesses to post an update. At this point, I expect that prostate cancer is in my rear view mirror, and that I have another 20-30-40 years left to enjoy life!

UPDATED

October 2022

It's been 12 years since initial treatment, and my cancer has returned. From years 5 to 10, PSA stayed below 1, hip pain diminished, ED got worse but Trimix has been a great help, still no urinary issues, life has been pretty great! PSA went above 1 in 2020, then 2 in 2021, then 3 and then to 5 in 2022. Bone scan in 2021 negative, PSMA/PET scan in 2022 showed two hot spots still contained within the gland. Confirmed by biopsy, Gleason 4+4, grade group 4. Feeling blessed to have had a good 12 years since initial treatment with minimal side effects, recurring cancer is contained and treatable, and technology has evolved by leaps and bounds. Evaluating salvage options now, leaning toward surgery. Biggest frustration is the lack of data and studies of younger men. I'm still younger than when most men get their initial diagnosis, and studies showing 5 years of follow up after salvage therapy don't help me make a 20+ year plan.

J's e-mail address is: jnc0101 AT yahoo.com (replace "AT" with "@")


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