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Stories
Dick
I am a 14 year survivor of prostate cancer. I was diagnosed in April 1995 and chose to have a Radical Prostatectomy. My PSA was 9.0 and I had a Gleason score of 7.0. My PSA rose after the surgery and I underwent 37 radiation treatments in the summer of 1996.
I am presently watching my PSA. It stands at 5.4 and has not changed substantially in 24 months. Needless to say it is a stressful situation. My only recourse is hormone treatments.
I have been involved with Gilda’s Club since 1997 when I joined the Board of Directors. I served on the board for 4 years and voted to start a Gilda’s Club here in Rochester. I feel the decision to start a club was a wise decision, and the success of the club bears that out.
I have acted as a Peer Facilitator of the Prostate Cancer Support Group since 1997.
Through the years I have personally seen many men with all the various stages of prostate cancer come to our meetings and leave with not only some valuable information, but also a better feeling knowing that they can come back to the meetings and discuss all aspects of prostate cancer--both the physical aspects and the emotional ones. I truly believe that the support is very beneficial to its members and even more so for the recently diagnosed who are facing some very difficult decisions and those who have recently undergone treatment.
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Dave
In November of 2006 a physical for an insurance company showed a PSA of 6.6. This was not acted upon until my annual physical in January of 2007 when my primary physician confirmed that my PSA had gone up from 4.6 to 6.4. He told me he wanted me to go to a urologist for a biopsy of my prostate. The biopsy showed cancer on both sides of my prostate and my Gleason score was 8.
My search for treatment lead me to a number of doctors and treatment possibilities. Surgery, both open and robotic did not appeal to me because of my reaction during a double hernia operation I had had in 2006. Brachytherapy (radioactive seed implants) was a reasonable option but none of the physicians I talked to convinced me it was the way to go. I went to the Pluta Cancer Center and decided to have the external beam radiation treatment.
My medical urologist administered a 4 month Lupron shot in March 2007 to reduce the size of my prostate.
I had 2 bone scans and a CAT scan between February and June and a medical oncologist prescribed a drug as a precautionary measure because of a questionable area in my rib cage.
One of the side effects of Lupron, hot flashes, was very noticeable throughout the radiation treatment and beyond. I had hot flashes up to December 2007.
In preparation for the external beam radiation, tattoos were put on my hips and 3 gold fiducial markers were put into my prostate gland to help in the directing of the beam radiation.
A friend of mine told me about Gilda’s Club and the Prostate Group that met on the second and fourth Tuesday each month. I went to my first meeting the day before my radiation treatment began at Pluta. I wish I had learned of the Prostate group at Gilda’s earlier in my search for treatment. It would have helped me make decisions about treatment, and talking to survivors would have alleviated some of the anxiety I faced between January (when the biopsy indicated I had prostate cancer) and June (when my treatment began). The meetings helped me understand what was happening, and gave me a place to get answers to questions I had about prostate cancer that I couldn’t find on my own.
External Beam Radiation began June 25, 2007 and was administered every weekday until August 24, 2007. Weekends were for R & R. About 5 weeks into the treatment I found that the radiation was making me very tired and I was looking forward to the weekend breaks in treatment.
I had a colonoscopy in 2003 that showed nothing abnormal except for 3 polyps which were removed and found to be benign. About 6 months after the radiation treatment I had another colonoscopy in April of 2008 that was clear except for showing the radiation proctitis. My next colonoscopy will be scheduled in 10 years.
I encountered blood in my stool with decreasing frequency after my 2008 colonoscopy. My gastroenterologist and radiation oncologist both indicated that this is normal after external beam radiation and it may last for a year or more.
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Greg
It all started around 1999 when my GP did a DRE (digital rectal exam) and then initiated a PSA (prostate-specific antigen) blood test at a routine physical exam. He said my prostate was enlarged and the PSA test was 2.9, it was nothing to worry about but time to see an urologist. The urologist did the DRE and an ultra sound and stated I had an enlarged prostate also known as BPH (benign prostatic hyperplasia). It was nothing to worry about but we need to monitor it every 6 months with a PSA test. Over the next 6 years the PSA would fluctuate from 2.3 to 3.1 down to 2.6 to 3.3. then it jumped to 4.5. The urologist did a biopsy that was negative for any cancer. Then the PSA jumped to 5.6 and another 11 sample biopsy revealed I had high grade tissue called prostatic intraepithelial neoplasia (PIN) which are tissue suspicious for the presence of prostate cancer. There is a 30%-50% likelihood of finding prostate cancer in a later biopsy when high-grade PIN is initially discovered. That meant I needed to be checked again in another 3 months. At that point, my PSA was up to 5.88 and that next 12 sample biopsy showed a Gleason score of 3+3 (6) low grade cancer found. The urologist scheduled additional testing a CT scan and a bone scan.
Meanwhile I seriously researched the possible results and treatments over the next couple of weeks before my test results were reviewed with my urologist. It scared the heck out of me because it seemed that the decision of what treatment to have would be the lesser of all evils since they all had very possible side effects and most studies related to 5 and 10 year life expectancy. This was not what I wanted to hear and I found conflicting information. The more I learned the more my mind went racing expecting the worse. It was hell waiting, trying to cope with disbelief, fear, anger, much anxiety and a loneliness like you’re the only one dealing with this sort of thing.
On 12/22/06 at age 53 my urologist reviewed the results with my wife and I. I requested copies of all tests, labs and pathology reports. He explained that there was no evidence of metastatic disease outside the prostate--this was the good news. The bad news is you will need to deal with it, and the sooner the better. He went over all the reports and what they meant. Then he reviewed the options available and possible side effects. That confirmed my lesser of all evils research and the anxiety mounted making me feel as if I was in a vacuum having my breath taken away.
Talking with family about my prostate cancer, I found out that my uncle Ted had prostate surgery when he was 67--he was now 79 and he beat the odds. So I gave him a call and went over to talk and get some straight unbiased information. Then I called the American Cancer Society looking for support groups: Man to Man and Gilda’s Club have active prostate cancer support groups. Now I could talk with actual prostate cancer survivors that could answer questions about all the different options available and side effects. The first meeting I attended was informative. The speaker that month was an oncology nurse who answered questions at Man to Man. Then I attended Gilda’s Club--it was less formal and the guys there were very understanding. They listened and answered the questions that I needed answered. The straight talk made me more comfortable with what I was going through, what decisions needed to be made, and gave me strength for what I was mentally facing.
Because of my age (53) my urologist made recommendations to consider. He referred me to a young surgeon for the gold standard of treatment, surgery. This surgeon I was uncomfortable with because he did not answer my questions directly. In my research I found I was most interested in a surgeon that could do open if needed. So I asked for a referral to get a second opinion. This next surgeon was the best at Robotic Laparoscopic and would not do my surgery if there was a possibility of having to switch to an open. I think he did not want to take a chance and ruin his stats of doing some 800+ Robotic Laparoscopic prostatectomy. So I asked for a 3rd referral to a urologist/surgeon that was suggested by a member of the Gilda’s Club support group.
My decision was made only after attending a few more support group meetings. I talked with an oncologist about radiation therapy and side effects. Investigated HIFU (high-intensity focused ultrasound) that was not FDA or insurance approved and only available in Canada. I decided for my age that Robotic Laparoscopic was the least of all evils.
The 3rd referral was the right surgeon and I found out that he trained the first surgeon I spoke with about Robotic Laparoscopic and has much experience in open, able to switch if called for. He had a team approach and answered all my questions without hesitation. His policy was nerve-sparing surgery if at all possible. If he had to switch from Robotic Laparoscopic to open surgery it would be based on level of danger and safety to patient complications found. He did have to convert to open surgery and it did go well. (There was to much scar tissue and adhesion from a previous colon operation 5 years earlier). .I was up and walking that evening and out of the hospital after 3 days. I should have stayed another day, since I had some blood clotting of my catheter and had to go back to the emergency that night to have it flushed. The catheter was in for 12 days. That was one of the most unpleasant parts of the open surgery other than the 6-7 days of incontinence.
My first PSA test after the prostate removal came back at 0.027 from 5.88 and the pathology report said the cancer they thought was contained within the prostate gland and that NO radiation therapy would be needed. The major side effects after 20 months has ended up being ED, continued anxiety and not being self assured.
My 20-20 hind-sight, is to build a support team. Your GP can help and direct you to a urologist, surgeon, radiation oncologist, medical oncologist. You must become the generalist, investigate all treatments available, and take someone with you to hear the answers to all your questions. Come to your own conclusions, do not take any one expert recommendation as gospel.
If my best friend was told he had prostate cancer, my advice would be to find a support group like Gilda’s Club. Investigate, choose, and do - and do it quickly. Be aggressive now. Don't save the best for later. Keep a journal of your tests, scans, Gleason scores, pathology reports, and notes on all the practitioners of all the different treatment forms. Include all the prepared questions you asked about each treatment and the answers the experts gave. This becomes your most important asset in helping you make the right decision for your particular treatment.
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Tod
In 2003 I was diagnosed with prostate cancer at age 59. My wife had just passed away from cancer and three months later I received the dreaded call resulting from a routine test. I didn’t even know what a PSA was. My primary care physician referred me to a urologist as I had a PSA of 7. The resulting biopsy confirmed that I did have prostate cancer with a Gleason score of 9.5. I knew there were many types of treatments so I set out to research them all. I used the library at Rochester General Hospital where they printed out all the articles they could find on PC. I reviewed Radiation, Cryo, and Surgery. I decided that laparoscopic surgery would be a worthwhile option as I was still working; unfortunately there was not much available in Rochester at this time. I interviewed a urologist, a radiation oncologist and my primary care physician.
The urologist recommended open surgery as did my primary care physician. I was still working and did not want to suffer the recovery time nor the risks with open surgery. My next choice was radioactive seeds, but the radiation oncologist said he could get the same or better results with traditional IMRT radiation using the linear accelerator. I was able to get my treatment while working and had no noticeable affects from the radiation except a little fatigue toward the end of the treatments.
By November of 2005 my PSA had dropped to .5 which everyone was comfortable with. I had no incontinence problems and minimal sexual issues which were resolved with a low dose of Viagra. Unfortunately with each doctor visit my PSA started to climb and by July of 2007 it was at 1.7. The recommendation was to have robotic assisted laparoscopic surgery and I agreed to have the surgery in October of 2007. Surgery following radiation therapy has many associated complications but the surgery (performed by Dr. Lois Eichael) went well. The biggest problem was discomfort from the in dwelling catheter which stayed in around two weeks. I was sent home with vicodin but did not need it.
I took a bad ice fall in December of 2007. I had many problems as a result of the fall and later was diagnosed with a fractured pelvis. I also had some surgical leakage of urine which pooled inside my body resulting in sepsis. I restored continence fairly quickly but had developed ED. By December of 2008 I also developed scar tissue in the urethra and was unable to urinate causing a scary back up of urine. I had surgery (bladder neck re-section) to open up the urethra to urine flow. I am still experiencing incontinence issues as a result of that surgery. My PSA continues to increase with each visit. It has gone from .2 after surgery to .475 as of March 2009. Although there was no previous evidence of prostate cancer having escaped from the gland it appears I have prostate cancer somewhere in my body. I struggle with future treatment options as well as the daily concern of what is going on and my inability to predict my future.
Through all of this I have attended the Gilda’s Club prostate cancer support group. My fellow cancer patients have shared their experiences and as often in life, you can find others who are dealing with a tougher situation than yourself. This often builds gratitude which can make one grateful that your situation is not worse. Our group members also offer a lot of information from their personal experiences as well and that is helping me deal with on going anxiety.
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Irwin
I have been a member of Gilda’s Club since the Fall of 2003. During this period, I have participated in support groups for both Prostate Cancer and Lymphoma/Leukemia. Each group provided both support and an opportunity to share anecdotal information on these diseases. In addition I have enjoyed movie nights and many social functions. I also attended both the Gilda’s Gala and the February Walk for Wellness fund raising events.. My cancer story is as follows:
When I was 50 (1985), my internist described my prostate as "generous". My PSA was less than 4.0.
In 1986, my PSA reached 4.0 so I started to see a urologist annually.
In 2002, my colonoscopy found cancer cells so I had a colectomy where the surgeon removed my ascending colon and associated lymph nodes. Biopsies found cancer cells in the 13th node examined. I was put on an infusion protocol of 5-FU. After surgery my PSA readings were as high as 8.5 but my urologist opined that it could be caused by the stress of the surgery.
That Summer (2003), I showed an enlarged lymph node on my neck to my oncologist. Although a needle biopsy did not show any cancer cells, we followed the needle biopsy with a slice of tissue. Mantle Cell Lymphoma cells were found. Now I started some serious infusion treatments. I am still being given monthly infusions.
In June 2005 with my PSA at 8, my urologist did a needle biopsy.
On a Gleason scale it was a 7. He recommended radiation. I asked my medical oncologist for his opinion. His initial comment was, "it is interesting that a surgeon recommended radiation". As I was in the infusion lab for treatment for five hours, he took time after his office visits to give me a long talk on the options available to me. Since I was now 70, radiation is a better option then surgery. I also hesitated about surgery because in my mind, surgery might initiate cancer activity. Just my personal idea.
I went to see a radiation oncologist in August 2005 who recommended that I start with Lupron hormones first. My friendly urologist administered a 30 day injection to make sure I could tolerate it. Then I got the 4 month dosage followed by another shot four months later.
I had 39 radiation treatments in October and November of 2005. My PSA dropped to 0.1. In 2007 it went to 0.24 and then in Feb. 2008 it was 0.48. It stayed at 0.48 Aug 2008 and Feb 2009 so my urologist said I should just wait and see with PSA tests in August and February. Since the radiation, my urine control is much improved. I usually can go at least three hours between trips to the rest room and have NO problems at night.
In July 2007, I passed a blood clot in my urine. A quick visit to my urologist showed no other symptoms. He opined that it was blood clot caused by the radiation and not something to worry about. It never recurred.
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