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 BRONZE 
This is his Country or State Flag

Jerry W and Denise live in Illinois, USA. He was 65 when he was diagnosed in February, 2014. His initial PSA was 8.20 ng/ml, his Gleason Score was 7a, and he was staged T2b. His choice of treatment was External Beam Radiation (Proton Beam). Here is his story.

About 10 years ago my GP added the PSA to my annual work up. It was a big number way back then, and grew very slowly. About two years ago he gave me a antibiotic to treat Prostatitus. Checked in 6 months, it went down. Checked in another 6 months it went up. So this year, after my annual he had me go to the Urologist...going to be part of my annual from now on.

Urologist did a DRE, and a more comprehensive PSA. After the results he suggested a biopsy. I decided to delay six months, and had my Biopsy February 6, 2014. Got the results on the 20th. Two of 12 had cancer, both 3+4=7, less than 30%. I was prepared for the diagnosis and very glad to learn it hadn't spread. It did however make a huge impact on me, always thought I was invincible. This was a huge wake up, and has deeply affected my appreciation of the value of life. Live every day to the fullest. I was fortunate to find YANA the first day, and pressed the Don't Panic button. Went to my first Us Too meeting a week later. The scans confirmed the cancer is contained, but since I've had Fistula Surgery I'm not a candidate for Surgery. I'm scheduled for a meeting with a Radiologist March 17th.

UPDATED

April 2014

My radiologist actually called me to review the meeting they had today with the PRB team today. Both teams have recommended Proton. They view it as a significantly lower risk for bowel complications. He gave me a lot of time and answered all my questions. Tomorrow their intake team will contact my insurance providers. They are confident of approval based on clinical factors. The next step will be to go down to CDH for a fitting. Interestingly, PBR requires more time per session vs IMRT. I will not be a candidate for the 4 week high dose trial, but will need to do the 8 week program. Hopefully my next update will be at the mid point of my treatment.

UPDATED

June 2014

Just reached the half way point. Only 22 more to go. The CDH Proton Center is great. Recently had the opportunity to go over my personal treatment plan. Not only was it fascinating, it reinforced my appreciation for precisely targeted treatment. I've been slotted for an 8:15am which leaves plenty of time for golf, or other normal daily activities. Since CDH is only 25 minutes from home the entire experience has been non disruptive. Drinking 16 oz of diet cranberry juice has been an effective way to avoid urinary issues. There are support/activity opportunities here just as you've read are available at Loma Linda.

Most of the others I've met are doing PRB because of other medical conditions, a few have concerns about the side affects of other treatments. Since Medicare will pay for PRB, it really simplifies the insurance aspect. All of my concerns about cost and coverage proved to be unnecessary. This was my only treatment alternative, but I'm very pleased with the program.

UPDATED

July 2014

Just finished 44 treatments with minimal side effects. Will not get a PSA for 90 days. So far so good!

UPDATED

October 2014

I just had my 90 day PSA, and was pleased hear it was 1.62. Prior to my 9 weeks of treatment it was 8.4, and my radiologist said to expect a reduction of 2 or perhaps up to 50% after 3 months. Perhaps he was lowering my expectations, but an 80% drop was great news! There have been no complications or side effects, and am very satisfied with my choice of PBRT.

UPDATED

February 2015

Just had the 6 month checkup. PSA was down to 1.05, steady progress. The only issue I've had is some hip stiffness and ache that started about 6 weeks ago. It is much better now, and I only experience pain when twisting. At the worst point I couldn't cross my legs comfortably without lifting my leg up with my hand. Not the case now. They don't advertise it, but I've learned that hip pain at 6 to 12 months following proton treatment is common. Otherwise no issues whatsoever. By the way, last Thursday was the 1 year anniversary of my diagnosis. I've shed about 10 lbs and walking a lot, so I feel pretty good.

UPDATED

September 2015

Well, 12 months after Proton treatment my PSA has dropped to .9, down from over 8! The only scare was in late August I had two episodes of a significant amount of blood in my urine from start to finish, plus burning. Went to the Urologist and got scoped. The bladder was 100% OK. It appears to be a side effect of the Proton treatment. However if you research blood in your urine you will come away with the idea you may have Bladder Cancer. I wish the Proton people were a bit more open about potential side effects, because fearing for a week I had Bladder Cancer wasn't fun. The Urologist told me not to be surprised if I have blood spots or blood in urine for the next few years. He wouldn't need to rescope me until about 3 years after treatment ended if blood reappeared. At that time you couldn't just assume it was treatment side effects. Other than that, my health has been normal.

UPDATED

September 2015

In all fairness to Proton, there's another side to the story. Went to th ER in great pain in the middle of the night. Imaging showed a fair size kidney stone at 6mm. The ER Doc thinks there's a good chance this may have caused the bloody pee last week and not the side effect of radiation!? I'll see the urologist late this week and he'll decide whether to wait or go in and remove it. We'll see if he still thinks that was a radiation side effect. Probably get a "we'll never know!

UPDATED

December 2015

Just had my checkup at the Proton Center. PSA down to .81 and all is going well.

UPDATED

July 2016

Just reached the 2 year mark since Proton treatment. Recent PSA is 0.43, still trending down. Have been staying active and eating right, resulting in a loss of 16 lbs. Just completed annual physical and the blood panel reported everything that should be down went down, and everything that should be up was. The most impressive drop was getting the cholesterol to 183! The loss of weight has improved my energy and overall sense of well being. The real test will be making these lifestyle changes permanent. It was really good seeing the effort reflected in the test results.

UPDATED

July 2017

Just had my 3 year check up and won't go back again for a year. Two interesting things. First my PSA increased .2 . I was told they really don't react unless it goes up 1.0 and I can expect a lot of up and down going forward. Also I reported dripping immediately after urination and was told as I get older the tube from the bladder sags, and catches residual urine. Exercises will help tighten that up. Otherwise no big issues. Going to go back on the Cialis.

Jerry's e-mail address is: jww1333 AT aol.com (replace "AT" with "@")


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