Living with Prostate Cancer: Meet others & introduce yourself

Well, Wednesday is the day I get the Fusion Guided Biopsy results and hopefully getting a definitive answer and what to do next. My PSA is at 15.6, Free PSA is at 6 and my PI-RADS v2 Assessment is 5. The MRI I had on 11/4 shows a lesion measuring 2.2 x 1.1 x 1.5 CM. All of this points to cancer. These last 2 weeks of waiting since the Biopsy has been HELL.

Assuming the worst I would love to be able to do the Proton treatment but the 6 to 8 weeks of treatment rules that out. Cyberknife sounds interesting since it is 2 to 5 days of treatment but I'm worried that the lesion is too large. Also the nearest hospital that does CyberKnife is San Francisco. I have to travel 3 hrs to get to a Urologist that I'm comfortable with for diagnosis but I'm 6+ hrs away from either Portland and San Francisco where I could find a MD to remove the cancer. Another option would be the LA area USC or UCLA since we have family there and my wife could stay with them if I need to get the Robotic Radical Prostatectomy do. My fear is with these distances what the heck do I do with followups; would I have to go the 6+ hrs or could the MD located 3 hrs away be able to do it?

Enough of my ranting,
@dandl48 Dave

Hi David, very glad to hear that your biopsy came back negative, but it sounds like you are waiting for the other shoe to drop sometime in the future. In the last 9 years, I've had two different cancers. So, I've been looking into why I've been getting cancer to see if I can do something to prevent the next one. It seems sometimes that our bodies are like time bombs waiting to go off. My cancers are "not related", but what I'm beginning to realize is that all cancers are formed in pretty much the same way, damage to the DNA in our cells. I read a book recently by David Sinclair on aging called Lifespan. He talks about what happens to our cells as we age and there is a direct correlation to the formation of cancers. Consequently, as we age we are more likely to get cancer. He
discusses what we can do to make our cells healthier and subsequently less likely to be cancerous. He has a website at http://www.lifespanbook.com, if you want to see what he has to say.
I've discussed with my GP some of what he identifies as remedies for aging cells, and he concurred that recent research backs what he has to say. The two my GP supported was intermittent fasting and intense exercise for short periods of time (spurts of 20 to 90 seconds of intense exercise). Sinclair talks about some supplements but I'm not ready to try them yet until I know more. However, Resveratrol, found in red wine, is one of the supplements. So a glass or two of a good pinot or merlot might help keep you younger. Actually, the Linus Pauling Institute at Oregon State U has information on how Resveratrol helps prevent cancer at the cellular level.
So, I've decided I can wait until the next shoe drops or try to do somethings that might prevent it from happening. You might try it.

Mike, your experience is similar to mine. My primary care physician caught the steady increase in my PSA count and referred me to my Urologist. By the time of my biopsy, it jumped a point. After I was diagnosed with cancer, it jumped again, going from 3.8 to 6.1 in 4 months. My Gleason also was 8.

The toughest thing after the diagnosis was what to do. My Urologist gave me a book with all the options. After reading the book, he asked me what I wanted to do. Totally confused, I sought out people who had been treated and decided to stay away from surgery and look into Proton Beam Therapy. Fortunately, like you, I eventually contacted Mayo Clinic in Phoenix. Mayo was very professional and gave me the best information on what to expect. They confirmed my diagnosis and then put me through a bone scan and hour and half MRI to be sure that the cancer was contained in the prostate, which it was. Since my cancer was more advanced, they put me on hormone therapy to slow down its progression. It also made the cancer cells less active and shrunk the prostate, making it easier to radiate. The research indicates that I had a 20 per cent greater success of survival with the combination of radiation and hormone therapy then just the radiation. We then waited two months before treatment started. I also had 20 treatments and finished at the end of January. Just had my check up and PSA was negligible.

I won't tell you that it was a piece of cake. The hormone therapy has some side effects like no libido, tiredness, muscle loss, weight gain, and moodiness. However, I was able to be active throughout the whole process, and would do it again.

Through the process, I met a number of people receiving Proton Beam Therapy. Their story was similar to mine. Mostly, they found out about the therapy on their own, and some were discouraged from having the therapy. Many traveled a great distance to get the therapy. Fortunately, Mayo has rent free facilities available.

Thanks for infor, i may post after my treatment is finished

Thanks for infor, i may post after my treatment is finished

Hello Colleen I was curious on information that you might be able to give me and or anyone in this group that has done the proton therapy approach for prostate cancer
Having my second biopsy the end of this month there were two lesions in the both lower lobes but they haven’t done a fied I’m wishing to save my use of my prostate without fully radiation or surgery to remove it this is why am looking in this direction has anyone done this and could you tell meIf in fact the function of the prostate continues normally thank you very much