Living with Prostate Cancer: Meet others & introduce yourself

Thanks so much. My Mayo rad onc doc tells me plan on a month of testosterone recovery for each month on hormone therapy. Guidelines obviously. My primary treatment would be proton therapy. MRI suggests that seminal vesicles “may be” impacted by cancer thus the longer hormone treatment. I was able to swallow the initially planned 6 month therapy but 18 would be brutal.

You need a second opinion. Frankly, my experience with Mayo has been mixed. My urologist was sharp, communicative and honest with his opinions. My radiologist was almost the opposite. If I didn't ask the right questions -- or any questions -- I was unlikely to get all the information I needed to consider my options. Mayo will "sell" you on Proton therapy because they have $100's of millions of dollars invested in the equipment. The reality is that there is no clinical proof that it is superior in any way to most conventional forms of radiation therapy. As my Mayo surgeon said to me, "Radiation is radiation no matter the source." And, yes, 18 months of hormone deprivation therapy would be brutal at any age and, in your case, being younger and very healthy, you're looking at major lifestyle changes that could be difficult to live with in my opinion. Perhaps you're adverse to surgery? If so, you may wish to re-consider. If you visit the Harvard Medical School site you'll find a very comprehensive and up to date guide on prostate cancer, including a detailed look at all options and even some references to clinical trials using alternative therapies. It's available for purchase and download at a nominal price. Well worth reading . . .

I have had radiation two different times at Mayo. Neither time was proton beam, did not even suggest it as an option, so I disagree with you that they “sell” Proton beam treatment. I have been on Lupron for over 4 years now. Yes there are side effects but I am alive.

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.

Hello, I am Joan Marasco from North Providence, Rhode Island. My husband Jim ( and I ) had hormone treatment in October, 2019, then after a two month wait, we attended 44 radiation treatments, concluding in February, 2020. Jim, age 73 years, experienced a progressive tiredness and instant incontinence. After several of these instances, I convinced him to use the protective un eder ware. Finally, this month urination has returned to normal, however the bowel movements have not. I have not read that bowel incontinence has been a consequence of radiation, however, it has affected Jim. Today, May, 2020, Jim is still dealing with this issue. I have tried a soup and bread diet, a normal healthy diet - fish and vegetables, a heartier steak and salad diet, nothing has worked. Has anyone else experienced this? any solutions? My mom used white rice when anyone had dysentery. I am going to try that alone. Thanks, Joan

I'm sorry for you and your husband. I'm glad he has been able to return to normal urination and I further hope that there is no evidence of any cancer. The incontinence in his bowels may also disappear with time, as often is the case with lingering side effects from radiation or even a radical prostatectomy. Loose bowels can be associated with radiation treatment. However, my understanding is that the situation typically resolves itself at some point after treatment completion. I presume your husband had SpaceOAR surgery prior to the commencement of his radiation to protect his rectum from unnecessary radiation exposure. If so, the problem you describe is unusual based on my knowledge of the situation. While diet is likely important, I wonder if there isn't a medication that would also assist in the process of remediating the problem? I strongly suggest you consult with your radiation oncologist or urologist for a further opinion.

To all of my brothers dealing with side effects after prostate surgery I just got this article from Medivizer. Don't give up, there is still hope. Bill https://medivizor.com/view_article/42543567?id=12305

Glad I had radiation vs surgery..the location of my cancer was a better choice ,I guess the only choice 26 treatments

Hi, my name is Mark. I found out 2 years ago I have two forms of cancer in three different areas of my prostate. The Dr. caught it JUST as it manifested it's insidious self. I am supposed to get checked every 3 months as that is what medicare will allow.As soon as the stupid virus reared it's ugly head my Dr. extended my next PSA test by one month. June 1st I am supposed to go in. Now the problem. I am very ill as of yesterday. Flu like symptoms. But I thought one got a cold first, THEN the flu. I am very weak. I do not want to go in for the blood test if I am positive for the covid virus. I do not know what to do and it's driving me crazy. Any ideas? Thank You.

I understand your anxiety. If you’re feeling ill as you describe, you should contact your MD to schedule a Covid 19 test immediately. You will not be admitted for a blood test until it’s known whether you have been infected. You may simply have the flu or another illness. Assuming the worst will only increase your anxiety. Should you be sick for any reason, it’s o.k. to postpone your PSA test for 2-4 weeks. Prostate cancer is slow progressing, so you’re unlikely to see much change in your PSA level in a short period of time. Take confidence in the fact that there are multiple treatment options for prostate cancer and the survivability rate is high.