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YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

 

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

Larry F lives in Arizona, USA. He was 56 when he was diagnosed in August, 2011. His initial PSA was 25.00 ng/ml, his Gleason Score was 8, and he was staged T2c. His choice of treatment was Surgery (Retropubic Prostatectomy + RT + ADT). Here is his story.

My PSA began to rise between 2005 and November 2007. Unfortunately during this time I was changing physicians and did not receive annual PSA tests. My father died of prostate cancer at age 76 and so I was pretty good about getting readings on an annual basis. During that time my PSA rose from .6 to 4.0. Not being familiar with prostate cancer and what that large increase might have meant, I ignored it for another 11 months as the lab report that provided the 4.0 indicated that that was okay for my age of 52. The other issue was that I was seeing a female alternative health professional and she was not alarmed by the reading either. In October, 2008 I had my annual physical with a general practitioner and at that point my PSA was 7.1.

The physician referred me to a urologist. And in November, 2008 when my PSA had climbed to 8.1 they completed a biopsy. My prostate was not enlarged although I was having urinary issues. The eight core biopsy was negative for cancer. They prescribed antibiotics and thought that it was likely prostatitis.

In May 2009 my PSA climbed 9.8, in October 2009 it was 12.5 and in December it was 13.9. During this time, the urologist continued to believe that it was prostatitis.

In April 2010 my PSA was 14.1, in June it went to 16.5 and at that time I had a 20 core biopsy with the same urologist. Once again, the biopsy was negative and they still believed I had prostatitis. In October, 2010 my PSA was 18.8.

In June, 2011 my PSA was 25.2. The urologist was still thinking prostatitis and wanted to go another three months and at that time I determined that it would be best to get a second opinion and contacted another urologist.

The new urologist ordered several tests including PCA3 urine analysis, and a cystoscopy. Prior to recommending a third biopsy - one that would entail being put into a hospital and under sedation so that the entire prostate could be biopsied - he predicted in a letter to my general practitioner that he thought I would be diagnosed with prostate cancer.

In August, 2011 I learned that I had cancer in nine of 40 cores and that the worst of the cores was a 4+4.

At this point the urologist recommended that I locate a surgeon to have the prostate removed. This was based on my age and good health.

In late September, I had the prostate removed. This was done by a 59-year-old surgeon that specialized in open surgery and had suffered from prostate cancer himself nine years earlier. He was chosen for his surgical expertise and bedside manner. After the 5 hour surgery, he indicated that it was the most difficult surgery he had had in 20 years due to the previous biopsies causing inflammation and scarring. During the procedure he tested lymph nodes and tissue via frozen section and discovered no additional cancer.

However, the pathology report, once the prostate was removed indicated a Gleason 10 on .5 cm near the apex at the margin. In addition, there was a Gleason six on .7 cm interior. T2C was the initial grading.

At six weeks post surgery, my surgeon ordered another PSA test and it came back at 11. This was obviously not what he was expecting as he thought it should be closer to zero. He believed there may be some reading due to the difficulty of the surgery and the fact that he had to leave some tissue near the anus behind (no pun intended).

With this news, I went to see a medical oncologist at the Tucson medical Center to confirm the prescribed post prostatectomy/high PSA plan of attack. This included initial daily Casodex 50 MG pills followed a month later by a six-month shot of Lupron and then followed up with radiation equal to 7200 cGy over 40 sessions over eight weeks. Once the Lupron shot was given that Casodex was discontinued.

My PSA reading post Lupron and pre-radiation in January, 2012 was .69. My next reading in June 2012 was undetectable or less than .003. My quarterly readings since then have been undetectable. In June, 2013 I received my last six-month shot of Lupron. In December I will begin quarterly readings for PSA and testosterone. According to my surgical urologist everything that can be done has been done and that at the present time all seems to be going as well as can be expected.

The side effects of the prostatectomy, radiation and Lupron have not been pleasant but from what I have been reading others have had it much worse. Post prostatectomy and prior to radiation I was immediately able to urinate without complication. After radiation, I began to have blood my urine, frequent urination during the night, stomach issues and fatigue. It was determined that the blood was from radiation damage to the bladder. Blood vessels were damaged and I had bladder stones growing. My urologist prescribed a natural supplement to lessen the buildup of the bladder stones and I took several drugs to alleviate the frequent urination. These drugs have since been stopped.

As of October, 2013 I have had no bleeding since May, 2013. The frequent urination comes and goes but mostly gone. I've been doing my kagel exercises but the incontinence seems to be getting worse in that I now wear a pad most of the time due to leakage. The leakage occurs if I cough, sneeze or exert myself. Due to the Lupron my libido is nonexistent. Hopefully this will change once the Lupron wears off and my testosterone returns.

That's my story and I am sticking to it.

UPDATED

March 2014

Gleason 10, PSA 25 and T3aN0M0 in November, 2011. Undetectable PSA since C11 Acetate Petscan, radiation, Casodex and Lupron through January 24, 2014.

The original plan: after 2 to 3 years allow testosterone to recover, monitor testosterone and PSA quarterly.

Second opinion: January 24, 2014 with medical oncologist that specializes in prostate cancer.

Recommendation: As insurance due to aggressive nature of cancer, do 6 to 8 months of Zytiga, 3 to 4 sessions of Taxotere and three-day a week weight bearing exercise to exhaustion and it should be aerobic. Insurance not cover $5K monthly cost of Zytiga. I am not castrate resistant.

Considerations regarding recommendation: Meet with Urologist/surgeon On February 8, 2014. Recommends against further treatment at this time. Stick with original plan. Do exercise. Lose weight. Side effects of Zytiga in the long run not known, chemo is poison, PSA undetectable for 2 years Lupron works, time will provide more options in event PSA rises.

My decision: After discussions with wife, prostate support people - exercise, lose weight and allow the testosterone to recover. Been a rough couple of years for me. Time to find out where things stand. Weight loss is currently 25 pounds in 6 weeks. Plans for trip with friends in the fall. Exercise and weight loss have provided newfound sources of energy.

Current side effects: still no libido, incontinence wearing pads daily until recent weight loss occurred!!! Now able to limit pad use to times of exercise, hiking, golf etc. Perhaps the fat was putting the squeeze on my bladder. Perhaps it's the dedication to exercise 6 or 7 days a week. Always do Kagels!

Each of us has a unique journey but I believe this site and the local support groups are here with us in our battle. This means of communication, education and sharing are essential to assist those of us that get the dreaded news YOU HAVE PROSTATE CANCER!!!

Many thanks to the pioneers and to those that continue to put their time and effort into this endeavor.

UPDATED

April 2015

PSA is still undetectable and my testosterone level has crossed into the normal level at 351 as of a few weeks ago. The plan is to monitor PSA every 4 months. If there is an increase in the future every attempt will be made to locate the problem via C11 acetate petscan or other comparable mode and then either resume Lupron or some other testosterone lowing drug as this has seemingly worked well for me to this date.

Obviously I do not want to go down any different road than I am on right now.

Last year I lost weight and commenced a very intense workout regimen. I hired a personal trainer 3 days a week (1 hour sessions) to build muscle mass as recommended by Dr. Scholz. In addition, I do intense spinning 1 hour sessions at the local gym 2 days a week. My wife and I also try to get in 2 good hikes when weather and time permit on the weekends.

Eating is still an issue although I eat pretty good most of the time. I just like to eat. I gained back 18 lbs since last July but I believe at least some of that is muscle mass. Lately I have notice a plateau. I can have a beer and pizza and not gain 5 lbs over night.

It has been 11 months since I started my routine and I believe at age 60 I am in better shape now than ever. This includes my days playing college football. Although I don't think I could take a hit now like I could then. Would not want to.

Never Quit! Exercise! Watch your diet!

Enjoy life as much as you can.

Cancer is trying to kill us from the inside and the politicians are trying to kill us from the outside.

UPDATED

May 2016

February, 2016 PSA; is still <.03, testosterone has risen to 512. Next check-up is 6/2016.

UPDATED

June 2017

PSA is still undetectable. Next 4 month check this month. Determined I have family BRCA2 gene. Sister also has it. She is 73 and has had 2 episodes of breast cancer. She used the information to determine double masectomy was best after last diagnosis (as opposed to lumpectomy or single masectomy). My couse of action is to monitor breast cancer, melanoma and pancreatic cancer risks. My daughter will be assessed. If she has the gene, will consider early removal of ovaries to head off ovarian cancer risk and pay close attention to signs of breast cancer. My boys will be assessed. If they do not have it, they will be at no greater risk of prostate cancer than the regular population. If they have it - they will monitor all risks more closely.

Larry's e-mail address is: lfriedri AT cox.net (replace "AT" with "@")


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