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1 day ago · Anyone had the 5 treatment proton therapy for prostate cancer? in Prostate Cancer

I had 20 treatments, not the 5, but talked to someone who had 5. He was part of a study to determine the toxicity of the treatment compared to more doses. He didn't have any problems and the results I've seen indicated the 5 treatment option was no more toxic. After my first 5 treatments, I had pain while urinating. I started taking Flomax which took care of the problem and a year and half later still taking it. I also had more urgency for the first 6 months after treatment. I think these are pretty common side effects. Not sure what your Gleason score is, but if it's in the advanced level, 8+, you may need the antigen deprivation treatment as well to slow down the advancement of cancer, shrink the prostrate before treatment, and reduce risk of the cancer coming back. My Gleason was 8 and my doctor said the use of Lupron was important to increase my chances of survival. Not sure if it's used with surgery, but seems like it might be necessary to reduce chance of the cancer showing up in other organs. I would recommend you talk with doctors who are familiar with the research on treatment options before you make a decision.

Sat, Jul 18 3:15pm · Anyone had Proton Beam SBRT radiation at Mayo Clinic? in Prostate Cancer

Yes, doing well. I had 5 weeks of treatment and they were painless. The prep before the treatment were more stressful then the treatments. Before hand they do a number of scans and insert some small carbon balls in the prostrate so the can program the machine to line you up for the radiation. Actual application of radiation last less than a minute. You can't feel it. I also had 3 doses of lupron because my cancer cells were more advanced. Since the treatment, my PSA has been less than .2. Other than the time involved, I would recommend the treatment.

Sat, Jul 18 1:25pm · Anyone had Proton Beam SBRT radiation at Mayo Clinic? in Prostate Cancer

I had PBT 18 months ago and Medicare and my supplement paid for all of the treatment. We paid for 20% of the office visits which was minimal. My treatment was at Mayo Phoenix.

Tue, Jun 2 8:23am · Follow up after proton beam treatment: GREAT PSA NUMBER in Prostate Cancer

That's great news. I finished my proton beam therapy January 2019. Since then I've had 3 PSA tests, all negligible. Each is a time to celebrate. I've learned to appreciate every day of being cancer free. My ADT was completed in April. So, now we will see what happens as my testosterone level returns to normal.

Sat, May 16 2:57pm · Living with Prostate Cancer: Meet others & introduce yourself in Prostate Cancer

Hi Michael T, I'm 20 months out from my diagnosis of cancer with a Gleason Score of 4+4. I was 73 and in good health at the time. My Urologist said it was an aggressive form, which put me in a little bit of a panic. I knew nothing about treatment options, except surgery that my brother had with poor results. My Urologist gave me a book by Dr Walsh from Johns Hopkins that had a long list of possible treatments. That made me more confused because the pressure was on to chose the right treatment. It was clear to me that I had to make the final choice. The main bit of information that I got from Dr Walsh was that to get the best result, I should go to a cancer center and if I was to have surgery, it should be from a well practiced surgeon. That left the local hospital out of the question.

I started to hit the internet, which helped but didn't get me to a final decision. The main takeaway was that if surgery was performed with the most recent robotic technology and with a competent surgeon the results could be better then my brother's. At the same time, a friend mentioned that he had a friend who had taken the Proton Beam Therapy 17 years earlier and had no recurring cancer. I talked to his friend, who was very positive about the outcome and sent me to a web-site called the Brotherhood of the Balloon that focused totally on cancer patients who had used Proton Beam Therapy. The creator of the web-site published a book about his experience with the decision to use PBT and what it was like during and after treatment. I read his book and with research that I found on the therapy compared to other forms of radiation indicated that the results were comparable but with fewer side-effects. That led me to choosing Proton Beam Therapy.
My next step was to find someplace to get the therapy. Since there are limited locations that provide the therapy, you can't go to your local hospital for treatment. We have a winter home in Sun City AZ so I applied to The Phoenix Mayo Clinic and was accepted in less than a week. After my first consultation with Dr. Vargas, it became clear that I still had a lot to learn about prostrate cancer and it's treatment. The first issue was had my cancer metastasized. The issue had not even been addressed by my urologist. The scans that Mayo put me through indicated that it was still in my prostrate. I was to learn that if it had traveled, my treatment would have been a lot more complicated. I met some others who were dealing with the metastasized cancer and it is not something to mess around with.

The second issue was the use of Antigen Deprivation Therapy with the radiation. My urologist also hadn't said anything about ADT. I was a little reluctant to use it until Dr. Vargas said that it would increase my chances of surviving the cancer by 20%. I checked out what he said and of course he new best. Here is an article that summarizes some research on the use of ADT with radiation therapy https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4985515/. My treatment consisted of 3 shots of Lupron that covered 18 months. I've just now completed the sequence. I can tell you that it changes your life, but cancer can do that. The report that I referenced above indicates that not every person with prostrate cancer needs to have ADT and I met a number of guys who didn't. With you Gleason score of 7, you may not need it with a higher dose of radiation. In my situation I felt like I didn't have much choice, if I wanted the best chance of watching my grandkids grow up. I won't go through what my side effects were from the ADT, but there was one area that I don't normally see mentioned. After my second treatment of ADT, Mayo gave me a bone density test. It showed that my chances of a broken bone was about 3 times higher then the normal person. They gave me an infusion of Reclast. The side effects from it were much worse than anything I had from the ADT. Now I feel pretty normal, except for the low libido.

In retrospect I think I made the right decision for what I knew at the time. Since then I've learned a lot more about the treatment of prostrate cancer. Today, I would look into the gene repair therapies as another option. I think in the next few years we will see some other options with fewer side effects.

Best of luck to you Michael T. This is a club you don't really want membership in.

Sorry about the long response, but your question brought back a lot of memories.

Thu, Apr 23 9:03am · Anyone had Proton Beam SBRT radiation at Mayo Clinic? in Prostate Cancer

Yes, I think you are right. My doses were probably stronger than yours and I had some urinary problems. Quite a bit of pain after my fifth dosage that was controlled with Aleve and Flomax. I'm still on the Flomax. I had the fewest doses of anyone I met. Not everyone had the Lupron shots. I think it depends on how advanced the cancer. I was told that the Lupron would increase my chances of SURVIVAL by 20 percent. Still it's at 80 percent. The key is whether or not it travels to other parts of the body. If it does, it becomes much harder to treat. That's why they keep checking your PSA. The cancer is caused by mutations of genes in your DNA. They can test to see where the problem exists, and for some gene mutations there are alternate treatments just like for breast cancer. They looked at my DNA afterwards to see if it could be Inherited. Fortunately, it wasn't. I wasn't aware of this option before treatment.

Wed, Apr 22 9:48pm · Anyone had Proton Beam SBRT radiation at Mayo Clinic? in Prostate Cancer

I can understand your concern. Mayo has published a report on their research comparing urinary and bowel issues from Hypofractionated proton beam therapy with 5 administrations to a larger number of administrations of typical strength proton beams. They found no differences in effects. They followed up for 18 to 25 months.

I have to mention that the choice is not between 5 and 39. My Gleason score was 4+4 or 8. It was at advanced stage. My treatment included 3 shots of Antigen Deprivation Therapy and 20 proton beam sessions. I was told that the number of radiation sessions was dependent on the containment of the cancer and health of patient. I had some urinary issues, pain and frequency. With medications the problem was controlled.

The guidelines for treating PCa also recommends that ADT is used concurrently with the radiation treatment, especially for patients with more advanced cancer like mine. I met other patients with lower Gleason scores who didn't need ADT. ADT has its own side effects that were manageable. Your oncologist should be able to tell you what treatment is best for you. I learned that one size doesn't fit all. Mayo doctors are really on top of the issues that affect treatments. In my case they had 13 doctors consult on the case.

Wed, Apr 22 2:38pm · Anyone had Proton Beam SBRT radiation at Mayo Clinic? in Prostate Cancer

I had protein beam radiation treatment at the Mayo Clinic in Phoenix January 2019. I had 20 treatments and don't think the 5 treatment option was available to me. I did talk to a man who had 5 treatments at the Rochester Mayo Clinic in 2018. He was part of a trial to see how severe were the side effects. I saw a study report that the side effects were no greater than with the 20 treatments that I had. The person I talked to was pretty satisfied with the 5 treatments. He had to travel several hours each day to get the treatments, so he appreciated only needing 5 treatments.