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1 day ago · Video Q&A about Cancer and Genetics in Cancer

I was diagnosed with Prostrate Cancer one year ago and received Proton beam therapy and Lupron injections over 18 months, which is pretty standard practice. I just saw a video on the use of PARP inhibitors with a diagnosis of mutation of certain genes. This sounds like a break through in treatment. Do you see more analysis of Gene mutation in diagnosis and treatment for cancer?

6 days ago · PSA numbers: Questions about new treatments in Prostate Cancer

I just watched the Q and A on prostrate cancer from Mayo Clinic posted on Oct. 3. It has a lot of useful information about psa testing, biopsies, treatment options, side effects, and reoccurring cancer. I wish I had seen this video when I was diagnosed with cancer a year ago. I discovered that my local urologist didn't use the most current procedures in my diagnosis. It reinforced my decision to seek out a research hospital like Mayo to pursue my treatment. They followed some procedures in my diagnosis that my local doctor left out.
My Mayo radiation oncologist also used a treatment that included proton beam radiation with Antigen Deprivation Therapy that increased my survival chances by 20% over just radiation. By the way, you can go on the American Medical Association web site and register as a patient and access their reports on prostrate cancer. I used the site to verify my radiation oncologist's treatment choice. Unfortunately, the report indicates that many doctors don't use that treatment option for advanced forms of my cancer (Gleason score of 8+).
I think my anxiety level would've been a lot lower, if I had known that the medical staff were using the most recent knowledge to determine If I had cancer and it's extent. Also, what are the factors that determine the best treatment option.
The two main take aways I got from the Q and A were have an MRI before having a biopsy. It will not only tell if you have cancer, but also focus the biopsy. The second was the difference in the treatment based on age. My radiation treatment was appropriate for my age (73), but if I was younger, surgery would've been more appropriate.

Hope this is helpful.

Wed, Sep 4 11:08am · PSA numbers: Questions about new treatments in Prostate Cancer

I can understand your concern. I was in your position a year ago. I was diagnosed with prostrate cancer with a Gleason of 8 and 6. My urologist gave me a book written by Dr Patrick Walsh titled A Guide to Surviving Prostrate Cancer. I have to admit that I began to panic after reading his book. The range of possible treatment surprised me. I thought there might be several options, but learned there were considerably more. What panicked me was that I was to decide on which treatment to use. So, what I took from the book was Dr Walsh's recommendation that you should get treatment from a research based cancer center. His research indicated that you are more likely to get a better outcome. That is one of the reasons I pursued treatment at Mayo.

When I met with my radiation oncologist at Mayo, his first question was whether I had any scans. I quickly learned that the cancer has a tendency to spread and if it does, the treatment becomes much more complex. So, regardless of the type of treatment, it is important to do a thorough diagnosis. When I had my treatment, I met others who did have cancer cells outside the prostrate. The statistics I've seen indicate that 40 per cent of men get a recurrence of the cancer. So, it's important to get the best treatment up front. I had proton beam therapy and Antigen Deprivation Therapy (hormone therapy). The ADT is to try and kill any rogue cancer cells left in my system. By the way, I chose proton beam therapy because it damages less of the good tissue.

Good luck with your decision. Talk to as many people as possible, including cancer survivors. The web site for "The Brotherhood of the Balloon" has good information on proton beam therapy.

Mon, May 20 6:19pm · Living with Prostate Cancer: Meet others & introduce yourself in Prostate Cancer

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.

Sat, Mar 23 10:36am · Living with Prostate Cancer: Meet others & introduce yourself in Prostate Cancer

Colleen asked about side effects. The hormone therapy does result in hot flashes, mine weren't as bad as some others. It also weakens bones, requiring taking calcium. It can increase breast size, but mine didn't change much. It also affects sexual ability. Fatigue was probably the most noticeable.

For radiation, the urethea is going to get hit. It will affect urination. Pain when urinating and urgency are the two most serious issues. They reduced the effects with Aleve and Flomax. The side effects from radiation are gone now.

Long term, all side effects should be gone. One advantage of Proton Beam Therapy is that it limits tissue damage, so only the prostrate got hit with the beam. The good cells will regenerate, but not the cancerous.

Also, during treatment I was able to continue normal activity, which is what they encourage.

Sat, Mar 23 10:14am · Living with Prostate Cancer: Meet others & introduce yourself in Prostate Cancer

The hardest part for me was who to talk to. The Urologist does the diagnosis, but his expertise is surgery. He had me schedule a session with a radiation oncologist, but he only did IRMT. I talked to patients who said their Urologist walked out of a meeting when they said they were considering Proton Therapy. Dr Walsh recommended that you consider contacting a National Cancer Center for treatment. They will have doctors with expertise in numerous treatment options. He also said they have better track record in curing cancer. All Mayo sites are centers, but their are others. My doctors didn't send me there. I had to find them. Unfortunately, they are not easily accessible to many people. There were patients at the Arizona Mayo Clinic from all over the country. You have to be very pro active and the resources to get their. Cancer society can provide free housing.

Fri, Mar 22 11:07am · Living with Prostate Cancer: Meet others & introduce yourself in Prostate Cancer

In June 2018 my GP noticed that my PSA was creeping up, but not real, 3.8. He is very cautious and referred me to my Urologist. The urologist said biopsy was only way to tell. Biopsy occurred in September and by then PSA jumped to 4.9. Biopsy showed cancer cells with Gleason score of 8 in one lob and 6 in another. The Urologist said it was serious and needed to be treated. He gave a book by Dr. Patrick Walsh from John Hopkins on Surviving Prostate Cancer, and scheduled follow up in two weeks to talk about treatment. The book is 520 pages and gives every known option for treatment. It was the most stressful two weeks of my life. The choice of treatment was mine.

As I was pouring over my options, my wife coincidentally was talking to a friend about my condition. He mentioned that he had a friend who treated his prostate cancer with Proton Beam radiation 17 years earlier and was cancer free. I contacted him to get more information. He referred me to Loma Linda University Medical Center where he was treated. Dr Walsh's book wasn't very encouraging about Proton Beam therapy being Superior to any other treatment, so I was looking for research on its effectiveness. I contacted Loma Linda and they sent me some literature, including a book by Robert J Marckini about beating prostate cancer without surgery. He is a survivor and talks about how he decided to you Proton Beam radiation, going down the same path I was going down. Robert also founded the "Brotherhood of the Balloon" organization to spread information on this therapy. At this point I decided to pursue Proton Beam Therapy, even though my GP and Urologist couldn't recommend it.

The web site for the Brotherhood of the Balloon listed the sites where I could get treatment. It was clear that my options were limited and the closest cancer center with the treat was 240 miles away. Fortunately, we have a second home in Arizona near the Mayo Clinic, which could provide the treatment. They accepted me for treatment and I met my radiation oncologist mid October. He quickly scheduled a bone scan and MRI to determine if the cancer had spread outside the prostate sac. Fortunately, it was still contained. His recommended treatment was three shots of Luprin at 6 month intervals. He said the first one would slow the rate of cancer progression, reduce the activity of the cancer cells and reduce the size of the prostrate. We had to wait two months before radiation could begin. The combination of hormone therapy and radiation increased my survival rate by 20%. My reading verified this information, but it also showed that some hospitals did not follow this practice. It is especially important for cases with Gleason scores at 8 or higher.

My radiation began on December 26. I had 20 treatments over 4 weeks. While at the clinic I met other patients who had anywhere from 5 to 44 treatments. Some were also getting chemo and radiation at the same time. It appears that the level of Gleason score and location affect treatment. Clearly, one size doesn't fit everyone. Mayo staff use the latest research to guide their treatment. The combination of hormone therapy and radiation does come with side effects, but are short term and manageable. It has been two months since the end of my radiation treatments and I'm feeling fine.