I have visited this site many times and while I am posting my story late I hope it can help others. I am thankful for the other YANA members who have helped me.
I was preparing for a long trip beginning last June and thought I would go for a physical. The GP's DRE (Digital Rectal Examination) exam led to a urologist (PSA 4.1) and the urologist led to a biopsy. A tumor could not be felt but the doctors thought my prostate was slightly enlarged. My first ever PSA test. WHAT"S A PSA TEST???
My biopsy did NOT go well. My doctor told me I would have a little discomfort. I had local anesthesia but maybe it wasn't enough. I got through it but just about passed out from the pain. I went into a twilight. Immediately after the biopsy another nurse came in. They raised my legs and gave me cold compresses on the face. The doctor said I was only a couple of minutes away from an ambulance call as I had the biopsy in his office.
A week later at my follow-up visit...I HAVE CANCER!!! Like many on this site it hit me like a ton of bricks. Twelve needle biopsy. Six positive for cancer. Five were Gleason 6 and one out of the twelve registered a Gleason 9!!!
My doctor told me I could go on my trip but I should make my decision on treatment quickly... within 2 or 3 months. I met with a surgeon in Miami (he recommended surgery). I met with a Brach specialist and he recommended Brachytherapy. I also contacted Florida Proton Therapy in Jacksonville and after reading Bob M's book and talking to Shand's doctors, decided on Proton Treatment. I have Florida Blue Cross and they approved quickly. I wondered if Florida's Blue Cross, being located also in Jacksonville had anything to do with a quick approval. I read where some members had problems with Blue Cross in other states.
My doctor had given me the numbers to a Brachytherapist and an excellent surgeon at the University of Miami. He did not discus Proton Treatment but was very supportive of my decision and from the beginning he encouraged me to make my decision after talking to other experts.
I chose Proton Treatment after reading Bob M's book and also reading of the many experiences on this website. It seemed like the MOST successful of the LEAST invasive treatments. At my age I was not too keen on some of the side effects I read about with surgery.
I started on Casodex around August 20th to shrink my prostate and slow the cancer. I was told mid October would be my work-up in Jacksonville. Just before starting Casodex I had my scans done to make sure the cancer had NOT spread outside my prostate. I was clear and probably had my first good night sleep in 2 months. I was lucky because my doctor told me the generic Casodex had just become available which was less costly.
During the 2 months leading up to my work-up I waited for the side effects to hit me. I am happy to say they did NOT. I do not know why but I felt normal. I tried to stay as sexually active as possible waiting for the day it would end. It did not. The only real change I noticed was a decrease in semen.
After the mid-October work-up with another scan and four marker placements in the prostate I had my first Proton Treatment November 3rd. I was delayed one day due to a problem with the equipment. I was worried about the marker insertions due to my bad experience with the biopsy. It was a non-event. Very little pain and I was finished in about 30 minutes.
At the beginning of treatment I discontinued Casodex and went on three 1 month Eligard/Lupron injections. Again, I read many accounts of some nasty side effects and opted for 1 month injections in case I could not handle the side effects. Again I continued to stay as sexually active as possible because I felt the activity would end soon. I consider myself EXTREMELY fortunate as I had no real side effects to the radiation or the injections until I got into January. About the beginning of December I had some slight burning during urination. This was remedied with Aleve. There was also a gradual increase in my breast size, which I still have. While the sexual enjoyment continued the ejaculate had ended. Also, 2 minor sunburn marks on my hips which are fading now (April '10).
My Proton Treatments were also non eventful and with the exception of a couple of days (of my 39 treatments) things were pretty much on schedule. I started out WITHOUT the balloon and thought I would NOT become a member of BOB. They used a saline solution for about a week. Yes, I would become a member of BOSS (Brotherhood of the Saline Solution) however they told me my body moved a little too much and started me on the Balloon after about 10 days. I preferred the solution but that was their call. Not a real big difference.
Without question, each and every treatment was done professionally and with care by everyone who worked there. As time progressed I was also able to get the time I wanted which was midday. I stayed at a local Extended Stay hotel about 10 minutes south on Rt. 95. A midday time allowed me to enjoy morning sleep and casual coffee and post treatment lunch with a late afternoon at the YMCA which has an inexpensive price (About $40). Everyone to their own schedule. After about 2 weeks I was able to switch away from an early evening treatment. It's a fair seniority system.
My last Eligard injection was a 30 Day injection on January 8th. I was not sure what to expect. I was told that some effects could last up to a year or beyond so I was still worried. By the time of my last injection the hot flashes had begun but the sex still continued without ejaculation.
I hit about a 4 week period where I was absolutely dead tired. This was about the beginning of March 2010. I still wonder why this side effect took so long!? I have eaten well and continued to exercise but my energy level went to about ZERO at this time.
By the beginning of April it seemed I was almost back to normal with the exception of still having some minor hot flashes. The energy is back and so is ejaculate, although not at the same level as pre-treatment. As many have said, everybody is different.
My last Proton treatment was December 29th and I had my 3 month blood work completed in late March. My PSA came back at 0.14. I am happy with that but a question in my mind is if the 0.14 is a result of the 3 months of Eligard (November through January) or the Proton Treatments or a little bit of both. Only time will tell but at this point it is probably the result of both.
I also feel (at this point) very lucky that the sex is still good and has been better since the ejaculate has come back. This will probably end again in the future because of the proton treatment. My only remaining issues are the occasional hot flash, SOME remaining tiredness and larger breasts. Additional exercise (lite weight lifting) has NOT been a solution to reducing the my chest. I guess I should not complain but if anyone has any other suggestions please let me know.
Everyone is different but I would recommend that anyone with Prostate Cancer look into Proton Treatment. Cancer is not fun, however, compared to other stories I have read I am (so far) VERY LUCKY!!! Minimum side effects with an overall excellent treatment experience.
Thanks again and good luck to all. I will report again at 6 months post treatment.
Sorry for not getting back sooner but I have been busy and living a normal life following my treatment. [Always good news!!]
It's 18 months since I completed Proton Therapy at Jacksonville and my life is certainly back to normal. My PSA was down dramatically to 0.14, three months after treatment, however my doctor attributed that to the 90 days of Eligard. Thus, my three month PSA test was probably lower due to the medicine. It went up after that and came back down to settle at 0.47 and 0.48 on my last two PSA tests.
The Eligard wore off fairly quickly for me with few side effects. Ejaculate did stop for about 3 or 4 months and I did have some fatigue, a few hot flashes, as well as occasional restless sleep. My urge to pee sitting down and shop for shoes also passed quickly. (I was told that Eligard/Lupron can have the same side effects on men as women who are going through their life change). [See Trading Places on ADT for another Yana man's views.] I've also gained about 8 pounds, which I'd like to lose, but it's not a problem.
The only other side effect I had was about 10 months after treatment I started to have some rectal bleeding. I still have it on occasion but not as frequently as before. I was told by my doctor that this is normal and usually corrects itself.
All functions are working well and I still have ejaculate, although not as much. My sex life is very good and I have had no urinary problems. Overall I sleep well and I am eating a little better than before with very little red meat in my diet. I also walk more regularly and stay very active with travel.
If anyone has any questions I would be happy to answer them.
Again, many people on YANA helped me through the process and I am ALWAYS happy to repay the help.
YOU ARE NOT ALONE
Best Wishes To ALL!!!!!
First, apologies for a late report. My excuses are travel and the fact that I wanted to include the results of my PSA test in October of 2012.
My PSA tests had been running in the range of 0.47 to 0.49. Then last October (2011) my PSA went to 0.88 which was a concern for me. I worried until January 2012 and that PSA test took me back to 0.47. I was relieved and wondered why there may have been a jump last October. I guess it may have been some physical activity or maybe having sexual activity too soon before the test. The last 2 tests I have refrained from sexual activity at least 5 days before the PSA tests (June and October 2012). The results of these tests were 0.29 and 0.25 respectively. So the results of my Proton treatment is still going in the right direction with the PSA still declining three years later. Obviously, I'm happy!!!
Another issue I had was rectal bleeding. Not painful but certainly disconcerting at times. The bleeding stopped this year in January (2012). The time line for bleeding (which I read was common but usually NOT a major issue after Proton treatment) following my treatment is as follows: Proton treatment ended in December of 2009. Bleeding began November 2010 (11 months later). Bleeding stopped January 2012 (14 months later). Bleeding was not on a daily basis and never caused any major problems. I'd go through breaks of no bleeding for 2 to 3 weeks at times. Sometimes light and sometimes heavy and I never had to use any type of pads. It only occurred during a bowel movement. Also, I noticed bleeding sometimes occurred on a day following a spirit cocktail but not red wine. This is my personal observation and I know everyone is different. Just my personal observation about myself. I knew about this possibility (rectal bleeding) before my treatment and knowing all I know now would still have chosen Proton treatment as my choice. It wasn't a major issue as it never affected normal activities in my life.
So, almost 3 years following my treatment my life is very normal. I am happy I chose Proton treatment but everyone has to make-up their own mind and decide what is best for them. No ED issues and my sexual activity is very normal....in fact very good! I also still have ejaculate but not at the same level as before treatment.
I am still thankful every day for the fine treatment I received by ALL of the staff at U of F Proton Therapy Institute, Shands in Jacksonville. Kudos also to this site (especially Terry Herbert) and numerous people here who helped me immensely regarding my cancer and options for treatment.
As I have said in my previous post, if anyone has any questions I would be happy to answer them. YOU ARE NOT ALONE!!!
BEST WISHES TO ALL!!!!!!!!!!
I'm sorry I haven't updated my story in several years but knowing a couple of friends and other people who have been diagnosed recently I thought I'd give a quick update. EVERYTHING IS FINE!!! My PSA has continued to drop and is now down to 0.16. I've taken no other medications since my treatment. Eligard was administered shortly after my final treatment in Jan. 2010. Occasional rectal bleeding has ceased for several years now. I feel GREAT and my sex life is normal. Ejaculate has also returned now for about the last 4 years.
I'm always thankful for the great job my doctors and nurses did. My life seems very normal. I wish good luck to ALL!!!!
Phil's e-mail address is: phillyfan50 AT hotmail.com (replace "AT" with "@")