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YANA - YOU ARE NOT ALONE NOW

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William H lives in Arizona, USA. He was 55 when he was diagnosed in June, 2009. His initial PSA was 3.70 ng/ml, his Gleason Score was 6, and he was staged T1c. His initial treatment choice was External Beam Radiation (Proton Beam) and his current treatment choice is None. Here is his story.

THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2014 SO THERE IS NO UPDATE.

After a routine physical with my GP, my initial PSA was measured at 4.1. I had read on a John Hopkins newsletter that engaging in sexual relations before a PSA test could elevate the results. I asked the doctor if she had heard of this and we researched it together in her office. We both learned that some things like sex, bike or horse riding and even heavy lifting might elevate a PSA reading. She was concerned and recommended a visit to a urologist.

The PSA from the urologist was 3.7, better but still elevated for my age. He thought we should do a biopsy, but I wanted to wait and see...typical for me because medical procedures are not really my thing. I agreed to the biopsy and near the end of May, 2009, it was done. It was one of the most unpleasant times I have spent in a long while, but I knew I would be going to Mexico with friends for a long Memorial Day Weekend at a wonderful beach house to relax and forget. It was hard to relax knowing that the results would not be available until we got back, but I did the best I could.

After coming back to Tucson, I dove into researching prostate cancer and was trying to read everything I could about it. I got the call from the doctors nurse telling me my scores and numbers and scheduled an appointment for my wife and I to meet with the doctor and go over the options I had. I thought for sure they would not find anything from the biopsy but felt like I got hit with a 2X4 after they said I had cancer. It was a terrible shock but was not as bad as it could be. I was grateful for spending the time to do a little research. I had 1 out of 12 core samples with cancer, and that sample was microscopic, .6 mm, less than 5%. I was a Gleason 6 so I knew I had caught it early.

I had not researched treatment options, because I thought they would not find anything. During the consultation with the doctor, I didn't hear much after he told me I had cancer and we should get it out. It was very surreal and felt like he was talking about someone else. He does Da Vinci robotic surgery so I scheduled surgery for July 2009.

I came home and once again dove into research on the internet. I came across an article by Dr. Andrew Weil, a very well know professor of integrated medicine at the University of Arizona. This is where I first learned about HIFU. I liked the non-invasive procedure, but the drawbacks were the cost of the procedure ($25,000) and the fact I would have to travel to Mexico for the procedure. HIFU is not covered in the US because it has not been approved yet and the procedure is currently doing clinical trials in the US. I did not qualify because of the size of my prostate (45 g).

I scheduled the procedure for July in Puerto Vallarta, Mexico but I continued to research.

I had initially ruled out radiation but something guided me to Proton Beam Therapy. It was different, non-invasive and my insurance covered it. I contacted Loma Linda, MD Anderson and Jacksonville, Florida and was quickly sent packets on their procedure. The more I read, the more I realized this procedure was the one for me.

Loma Linda is closer to me than the others but I was told I could not get a consultation until Early November. I was freaking out thinking of having to wait so long. The scheduler called on a Friday after clearing my insurance and said I had a consultation mid October. I asked about being put on a cancellation list to maybe get in a bit sooner. Three hours later she called back and asked if there was any I could come on Tuesday. I said I could be there in 6 hours if I had to!

I had my consultation with Dr Jabola July 28, and I am set to begin treatment around the middle of September. I am an actor and needed to finish a play I am appearing in, so that is why I delayed the treatment.

I am so grateful that things have fallen into place, and feel so much more at ease knowing that I have chosen the best treatment for me. I realize I caught this early and any modality would give me close to the same results, but Proton Beam seems to have fewer side effects. I pray this will be successful and look forward to posting updates during the process.

Please contact me with any questions, concerns or if you just need someone to talk to.

UPDATED

February 2011

After finishing treatment at Loma Linda in November of 2009 I returned to Tucson and went back to work. Loma Linda was a remarkable place and I am very grateful to have found this treatment option.

My first follow up visit with my local radiation oncologist was met with great apprehension. It had been four months since I had finished treatment and I did not know what to expect. My doctors had said they would be happy with a 30-50% drop in my PSA...to around 2.3-2.7. My doctor said I was at 0.8! I could not believe what she had said and I was stunned to say the least and extremely happy that my PSA was going in the right direction.

My next follow up visit came six months later in September of 2010. PSA was 0.5!! Again very happy with the results. My next follow up is in March of 2011 and I will post my results when I know them. I know there is a possibility of a "PSA Bounce", but I am hoping not to experience that. I have not experienced any side effects and am always willing to share my experiences with other guys facing this beast.

Please contact me and I will respond.

UPDATED

November 2011

I had another follow up PSA test in March of 2011 and it continued to drop. It came back at 0.3 so I was very happy once again and very grateful that I found Proton Beam Therapy, and in particular Loma Linda.

My latest PSA test was in September 2011 and it was again 0.3. That was was my 2 year post treatment test and still very pleased with my results. It is rather strange that at times I miss Loma Linda and going through the entire treatment process there. I have talked to others and they have expressed the same type of feelings...kind of a longing to go back there. It is strange to me because of the circumstances, having cancer and getting treatment. But being able to totally focus on myself and healing ME was a remarkable experience for me. I was in Loma Linda for the 9-10 weeks alone and really had nothing to do..and all day to do it. It was a luxury that gave me the opportunity to refocus and figure out my priorities. I mean, having cancer...having the oncologist tell you that you have cancer was a HUGE shock.

On this site's home page there is a big button that says...DON'T PANIC. Yeah right! I was in total panic mode! Yet when I first got to Loma Linda, I knew I was in the right place for me. I worked out everyday and got in the best shape I have been in a long time. I did not have to think of anyone else but myself...which was quite a luxury. I focused totally on myself, my diet, my body, my needs and wants and did not need to run it by anyone else. I did not need to schedule a meeting, or change my calendar. I was so totally relaxed and in the moment. Be here now was my mantra.

I will continue to update my status and am always available for questions and honest answers about my experience. Please do not hesitate to contact me.

UPDATED

February 2013

Prior to my last PSA test in September of 2012, I noticed a small amount of blood in my urine. I was alarmed and my primary care physician referred me to a urologist. He was not that concerned, but of course he is not a spiraling worry wart that I am.

He wanted to do a cystoscopy to check everything out. Everything was fine and he felt that it was probably a side effect of my Proton Beam Therapy.The only other side effect from this treatment option for me is less ejaculate (dry orgasm). Sensation is still the same.

My PSA has dropped again to 0.2 and I have never experienced any "bump" in PSA or other side effects that can be attributed to Proton Beam Therapy.

Please do your homework before you decide on a treatment option. Find the one that is best for you. I have counseled other friends on their choices, and I always say to find the treatment option that they are comfortable with. My decision was based on quality of life issues. The side effects that were possible with other treatment options scared me away. Some of my friends that decided on surgery are disappointed with the problems they have encountered. I continue to be very grateful and very happy with finding a treatment option that worked for me. My "Radiation Vacation" was the best solution for me. I am always available to talk to about my story. It can be very scary...but contact me if you would like more answers to your questions.

William's e-mail address is: williamfhubbard AT gmail.com (replace "AT" with "@")

NOTE: William has not updated his story for more than 15 months, so you may not receive any response from him.


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