YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

SILVER

Bill Robinson and S live in Michigan, USA. Bill was 60 when he was diagnosed on July 19 2005. His initial PSA was 11.2 ng/ml and he was given two Gleason Scores - 3+3=6 and 3+4=7. Although he does not give his staging it was probably T1c. He was not yet decided on treatment. Here is his story:

In late May, 2005 I went to my doctor for a routine physical. I also was concerned about a mole on my back. My brother had just been diagnosed with Malignant Melanoma. As part of the physical he ordered a full blood workup. That was when I learned I had an elevated PSA 11.137 ng/ml. I was refered to a Urologist for follow up.

My GP told me that the high PSA may not be a problem but when he mentioned the dreaded "C" word my brain short cIrcuited and I really don't remember to much after that.

When I got home I told my wife. We had a long talk about it and decided to keep a positive attitude about it. After all, there are many reasons for elevated PSA.

I wouldn't be here if there was no problem. Four days ago I got a call from the Urologist. He told me my Biopsy was positive for cancer cells. I had CANCER.

I have to admit I did not take it very well. The first hour or so wasn't to bad. The Urologist's words were still in my head. "Don't let this upset you to much. It is very treatable and you have plenty of time. It is in the early stages and there are many options for treatment." He also told me that I may want to just keep an eye on it. See how it progresses. He wanted to see me in his office so we could discuss the options. I have an appointment for August 11, 2005. It would be sooner but my wife and I already had plans for a week vacation in Nashville, TN and we decided not to postpone it. After all, I have plenty of time. Right?

Well, then it hit me. I have Cancer. That night I was a basket case. I was scared to death. I have always had a fear of dying and now it hit me like a ton of bricks. I lay in bed trembling. My wife helped me through the night.

Now I am on a crusade to find out everything I can about my cancer. Alternative treatments, Surgery, Radiation, You name it. I have not even met with the Urologist yet but when I do I hope to know as much about this thing as he does, maybe more.
I am still pretty shook up. It dominates my thoughts. I can get away from it for a few minutes but it just creeps back in. I guess my biggest fear now is whether or not it is contained. My wife got the Pathology report from the Hospital. She is a nurse there. It indicates no spread outside of the prostate but I know only a bone scan and MRI will tell for sure.

I want to continue updating this and let you know where my journey leads. I want to thank all of you that have come before me to tell your story. Reading them has helped. I wish there was live chat somewhere I could go. Or just someone to talk to.

Oh! by the way. I asked the Urologists if I had to worry about any complications from the biopsy. He said not really, sometimes there might be infection but we can handle that easily. Well he did not tell me that the biopsy could accelerate the cancer or provide a pathway for it to escape the Prostate. If he had I might have insisted on an MRI or some other form of imagery before he did the biopsy. I am still angry at that. Taught me a lesson. Be informed , educate yourself. Trust NO ONE.

 

UPDATED

October 2005

 

In early September 2005 I was in a state of panic. I had spent 6 weeks reading everything I could find on Prostate Cancer. The Partin tables were telling me I had a pretty good chance the cancer had spread outside my prostate. I was pretty convinced I was a walking dead man.

My wife and I had poster boards hanging on the walls with charts and diagrams we had made trying to compare treatments. I had stacks of papers and pamphlets all over the place. I had been sent information from different treatment centers. All, of course, urged me to take their treatment as I was a perfect candidate for them. Their treatment would be the ONLY one to cure me. I was a basket case. I was angry. Why hadn't my doctor tested my PSA. I went 10 years to this doctor and he never once suggested I get a PSA test. I wasn't sure who to blame, him or myself.

I finally told my wife it was time to make a decision. I had to choose a treatment. I started reviewing the charts and thinking back over the progress I had made. I soon realized that I always kept going back to Proton Beam. When I looked at cure rates Proton seemed to work about as well as the others. When I looked at side effects Proton seemed to have the fewest. When I talked to men treated with Proton they seemed to be the most satisfied.As I reviewed the charts the numbers and percentages all seemed to point to Proton as the Treatment that would work best for me. Keep in mind that phrase, TREATMENT THAT WOULD WORK BEST FOR ME. That is important. You have got to look at Prostate Cancer as an individual not as a group. Each man has a different case.

I made one more phone call, to Bob Marckini. He is the founder of Proton Bob. He urged me to call the men on the contact list. I did. I am now at Loma Linda Medical Center in California. I am on my 10th day of treatment.

There was concern over whether my cancer was outside the prostate or not so I underwent a endorectal MRI with spectography. It showed no evidence of extracapsular extension. That is significant because it determines whether you will receive Proton only or a combination Proton/Photon radiation. Obviously Proton alone is preferable. There are less side effects. However the side effects of the combination treatment are significantly less than with Photon alone.

This is getting a bit long so I'll cut it short. If you want to know more about Proton go to Proton Bob. In closing I will say the Doctors and staff at this facitily are wonderful caring people and every effort is made to make sure your treatment is a good experience. Actually we are having a lot of fun here. As they say, It is a Radiation Vacation.

Any questions please feel free to call me or email me.

Good luck and I wish you well.

 

UPDATED

November 2006

 

I must apologize for not updating sooner. Truth is I have been in such good health I have just about forgotten I had Prostate cancer.

My last PSA was done 6 months ago. I decided I was not going to run to the doctor every couple months for an update. Proton takes as much as 2 years to finish its work. Until then I will not know my outcome. But based on the men I have talked with who have received Proton I believe I will be OK.

It has been eleven months and five days since I was given my last dose of Protons. So far I am doing fine. I had a couple months of off and on urinary discomfort that was helped by Flomax. Beyond that I have had no problems.

Prior to treatment I had a few problems with ED. During treatment my Doc gave me some Viagra to try. Well it worked great. I still use it occasionally but most of the time it is not needed. I have never had a single incidence of incontinence.

The Docs at Loma Linda told me to expect about a 30% drop in PSA with the first six months. My PSA dropped from a high of 14.7 ng/ml to 4.3 ng/ml ( think it was .3) I don't have it in front of me right now. In either case it was about a 70% drop. I was happy about that. DRE was negative. My Doc said it felt normal but was a little "mushy". Well I guess 44 Proton treatments will do the to ya.

I have a script for a PSA test right now. I just need to get in to get it done. But, it is hunting season now and I have been spending my days stomping around in the woods and swamp behind my house in search of that big Whitetail Buck that I know lives out there. I got a nice Doe last week. So the meat is in the freezer. Very Lean red meat I might add. I also shot a nice Turkey last month so I have been having a good season so far.

I promise to get my PSA checked soon and I will post my results. I recommend Proton therapy as a treatment for Prostate cancer. But, having said that, no one can say what the longterm outcome will be until you get there. I look forward to many more deer hunting seasons.

 

UPDATED

December 2006

 

 

This will be a very Merry Christmas indeed. My last update I said my PSA had dropped to 4.7 ng/ml. I was mistaken. It was 3.7 ng/ml.

Last Thursday I finally got up the nerve to go for my 1 year follow up PSA. I was a bit tense about it. I just got a call from my Doc. PSA 1.6 ng/ml....... Woooooo hooooooo!! Life is good.

I did not realize how tense my wife was about it until I saw the tears. Happy tears.

So from a high of 14.7 ng/ml prior to Proton treatment to 1.6 ng/ml. That is good news indeed. My Doc wanted to know if I was on any Hormone treatment he didn't know about. He was very surprised at this PSA level. But, that does not surprise me since he also new nothing about Proton Radiation when I told him that was my choice of treatment.

So far zero side effects from the treatment. I feel fine and all systems are functioning just fine. Guess I'll relax until my next PSA level test in six months. Anyone wants more info on Proton call me or go to Proton Bob.

Bill Robinson

 

 

UPDATED

February 2008

 

I want to touch base since it has been so long. I have not had a recent PSA test done. My Insurance Company is baulking at doing them more than once a year because my last PSA was normal. Can you believe that?! It's as if I never had the cancer . Never mind that my doc wants to make sure it hasn't come back. My last PSA was April 2007 so I have to wait until April to get an update. I will come back and update as soon as I get the test. Just so you know I am fine. No side effects from the Proton Beam at all.

I have developed a few other medical problems but non related to the cancer or the treatment.

 

 

UPDATED

April 2008

 

I want to let everyone know how things are progressing. I updated a couple weeks ago but did not have a current PSA reading to share.

Well I got the news yesterday. My PSA is 0.72. I am two years post treatment and that is right on target. I still have no side effects from the treatment and I feel great.

Heck I am having more problems from stopping smoking than from the Cancer. I have gained 20 pounds in 8 months. I need to lose some weight.

 

 

UPDATED

August 2009

 

 

I am happy to report that I am still here. I am also happy to report that as far as I know I am Cancer free. I never say "cured" because I don't think you ever are. It will be 4 years since I started treatment in September 2005. I think my story is pretty typical of the men who have received Proton Therapy for their Prostate Cancer.

The only real side effect I have experienced is urgency of bowel but I would not consider it severe. It has gotten better. Rarely is a problem. I just had to plan my day a little better. I also have learned to eat a healthier diet. Staying regular and consistent helps a lot.

There has been occasional ED but I really don't think it is any more of a problem than it was before Proton. So I can't actually blame it on the Proton treatment. Viagra as needed takes care of that.

I had one episode of rectal bleeding but it was after a little constipation. It only happened once.

That is the extent of my side effects from the Proton treatment. I am doing fine. I still recommend Proton as the choice of treatment for Prostate Cancer. I was treated at Loma Linda Medical Center in California. I highly recommend them. I cannot speak for the other Proton treatment centers.

Good luck guys. If you have any questions please feel free to contact me.

Bill

 

UPDATED

December 2009

 

 

Well folks,

One more year has passed and it seems all is well in Prostateville. My latest PSA was done Nov 23, 2009. It is 0.59 This PSA test was done in a different Lab so there may be some variation from my last test. When possible it is best to use the same Lab but I have relocated 500 miles south. And I must say I am liking the weather here.

As for the rest, no real glaring side effects have shown up. I did have the one episode of rectal bleeding but it never happened again. The Colonoscopy I had showed some minor revascularation (whatever that means). The Doc said it was nothing to worry about. Hey! it ain't his Colon. Of course I am going to worry about it. I still have some urgency of bowel but I have that under control. A BM in the morning and I am set for the day. No accidents. And it is getting better.

ED is still a bit of a problem. The mechanics work ok it seems my Libido might be the problem. Viagra still works fine. I have been under a lot of stress this last year. My younger Brother, 54 years old, was diagnosed with NHL (non-Hodgkin's lymphoma) right after Christmas last year. He fought it hard but lost his fight in September. I am still suffering from that. I cannot accept that he is dead. I am having problems with depression. I also relocated to another state, bought a new house and my old house has not sold.

Beyond that I am OK. I believe my Cancer is gone and will not return. I will continue to update my story. but only once a year when I get my PSA checked. I am still writing songs and making a little music. But this year I have not done much.

Feel free to contact me if you have any questions about Proton Treatment.

Bill

Bill's e-mail address is: bill_robinson@comcast.net

and his phone number is 269-760-2590