Living with Prostate Cancer: Meet others & introduce yourself

Welcome to the Prostate Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet others living with prostate cancer or caring for someone with prostate cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Mentors on Connect.

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Let’s start with introductions. When were you diagnosed with prostate cancer? What treatments did you have? Tips to share?

Similar scores, though my age is 73. That said, I opted for IMRT radiation in combination with ADG therapy after consultations with 3 urologists. Radiation therapy has dramatically improved in the last decade due to advancing technology. Side effects are considerably less and success rate is considerably improved vs. methods used just a few years ago. That said, at your age, surgery is typically the choice most people make. If the cancer has not spread beyond the prostate, there's a strong likelihood you will be free of cancer for the foreseeable future. Good news, since you're relatively young. However, the side effects and potential consequences of surgery vs. radiation have to be weighed — impotency, incontinence, etc. And, of course, during surgery, you will be further biopsied to determine if the cancer has spread outside the prostate if not previously detected. If so, further surgery may be needed to remove additional impacted areas by cancer cells adjacent to your prostate. Making the decision of surgery vs. alternative treatments (e.g., radiation) is very difficult. It's a multi-variate analysis based on Gleeson, scores, age, lifestyle, sexual considerations, etc., etc., etc. I highly recommend you visit the online site for the Prostate Cancer Research Institute (PCRI.org). Their assessment of treatment options/risks is easy to understand and comes with numerous and highly educational videos that weigh the pros/cons of different treatments. These will help you avoid confusion and provide you with a much clearer path to choose the direction that is best for you. Finally, talk to men who have had various treatments. An online forum like this is a good place to learn more but nothing substitutes for a first-hand conversation with a person who has been there and done that. Good luck!

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Michael T. I’m 72 and just finished IMRT radiation and hormone therapy (Zoladex). Gleason score was 7. I take warfrin so it was strongly recommended I go with radiation instead of surgery. No problems with radiation. Suggest you gather all the info you can regarding side effects of radiation vs surgery. I was told both options have excellent results provided the cancer has not spread outside the prostrate. I had an MRI, that confirmed cancer was contained in the prostrate. If I was your age, in good health, and no other health issues, I probably would have had surgery. With hormone therapy, I had to wait two months (it takes that long for the shot to provide maximum benefits) after the first shot before they would do radiation. After radiation, I was given another shot that stayed in my system for 28 days. That’s 4 months plus additional months as the radiation effects wear off and the testosterone levels get back to normal. I am very pleased with the care received! I do not have any regrets going with radiation, given my situation. I have heard the recovery from surgery is quicker which is more appealing to me. Either choice is good. Good luck. Take care!

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@mahowey5835

Want to go by Michael "T" for this group. Diagnosed with Gleason 7 Bi-lateral (unfavorable intermediate) cancer on 4-6-2020 via biopsy (TRUS procedure). PSA went from 6.4 to 8.5 roughly over the last year. I'm healthy and 62 (just retired – incredible timing huh). Waiting to find out if constrained to the prostate, but MRI imaging a year ago indicated that it was. Will have another on June 1. Although leaning in direction of surgery (RARP), not totally their yet. I like the probability of being cured with a good chance of having my original life span back! However, new forms of radiation therapy (IMRT, proton SBRT) may still be an option for me. Undecided. It seems to me that the post-op biopsy of the prostate and surrounding tissue is a huge plus for being cured with surgery. This of course not possible with radiation. Looking for any feedback, or key points learned from personal experience or research which could help me with this decision. Thanks a bunch!

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Here is the response I posted 3 months ago to another guy looking at the same decision: "I had similar numbers to yours in 2016 and after much study, I chose surgery to remove the prostate at Mayo Scottsdale with the daVinci. It went well and the surgeons are great!. There's still a little residual pain, a little leakage on sneezing and ED issues but my PSA remains at zero and my sense of relief is still intense. Anytime you can cure cancer with surgery, you should do so. The alternatives have too many side effects and doing nothing is a big risk that you will progress past the point where surgery can help. Surgery also eliminates the problems related to the prostate and you will have a strong stream In future. Good luck with your decision. Let me know if you have any more questions."
I was 74 when I had the surgery in 2016. You should get the genetic profile done, I think it is the Prolaris test. It assesses the aggressiveness of your cancer. I came out right in the middle, 5 out of 10. If you at 1 or 2, you could consider waiting but if you're 5 or over it is a no-brainer to have surgery. I have now had undetectable PSA for 4 years. Great peace of mind and acceptable side effects.

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@mahowey5835

Want to go by Michael "T" for this group. Diagnosed with Gleason 7 Bi-lateral (unfavorable intermediate) cancer on 4-6-2020 via biopsy (TRUS procedure). PSA went from 6.4 to 8.5 roughly over the last year. I'm healthy and 62 (just retired – incredible timing huh). Waiting to find out if constrained to the prostate, but MRI imaging a year ago indicated that it was. Will have another on June 1. Although leaning in direction of surgery (RARP), not totally their yet. I like the probability of being cured with a good chance of having my original life span back! However, new forms of radiation therapy (IMRT, proton SBRT) may still be an option for me. Undecided. It seems to me that the post-op biopsy of the prostate and surrounding tissue is a huge plus for being cured with surgery. This of course not possible with radiation. Looking for any feedback, or key points learned from personal experience or research which could help me with this decision. Thanks a bunch!

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I was with you in heading toward proton therapy which seems just awesome. Unfortunately the extensive hormone therapy (18 months plus 18 more of testosterone recovery for me) is a sledgehammer to my libido for 3 years. You never know how many decent libido years you have left. Tough decision for sure. I haven’t committed yet. I’m 59 and super healthy except for the whole cancer thing.

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I agree. Hormone therapy can be tough . . . hot flashes, loss of libido and fatigue are frequent consequences. Been there. Doing that. At your age, the 18 month timeframe for ADG therapy seems extreme to me. Moreover, it shouldn't take 18 months to regain your testosterone level. Further, depending on the progression of your cancer and your Gleeson scores, hormone therapy alone wouldn't be a prudent choice in my judgment. Yes, hormone therapy helps quell the gasoline (testosterone) that feeds the cancer fire. However, there's no guarantee that it will kill all the cancer cells. An extended hormone treatment of the kind you described is more likely to be prescribed for someone who has had previous treatment for prostate cancer — surgery, radiation or other — and has seen a recurrence of an elevated PSA. In those instances, a testosterone inhibitor can keep the cancer at bay where earlier options — again, surgery, radiation or other — are no longer suitable for the patient. I suggest you get another MD opinion to make sure you're looking at all the options correctly.

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@mahowey5835

Want to go by Michael "T" for this group. Diagnosed with Gleason 7 Bi-lateral (unfavorable intermediate) cancer on 4-6-2020 via biopsy (TRUS procedure). PSA went from 6.4 to 8.5 roughly over the last year. I'm healthy and 62 (just retired – incredible timing huh). Waiting to find out if constrained to the prostate, but MRI imaging a year ago indicated that it was. Will have another on June 1. Although leaning in direction of surgery (RARP), not totally their yet. I like the probability of being cured with a good chance of having my original life span back! However, new forms of radiation therapy (IMRT, proton SBRT) may still be an option for me. Undecided. It seems to me that the post-op biopsy of the prostate and surrounding tissue is a huge plus for being cured with surgery. This of course not possible with radiation. Looking for any feedback, or key points learned from personal experience or research which could help me with this decision. Thanks a bunch!

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Was in a similar situation age 65/66. Still considered "young" and strong. PSA varied over a year from 7.2 to 10.4. Gleason 7 (3+4) at the beginning biopsy. Also had the Genomic test and was on the advanced side of the curve. General info says surgery and radiation can deliver the same results, but that radiation can have consequences farther down the line . I opted for surgery for the same reasons, hopefully "1 and done" and they get to biopsy the whole prostate after and see what happened. Also a general theory put forth was that age can have a lot to do with choice, where 65 and healthy doing surgery is great, but 75 or 80 and not as strong can really tip the scale to radiation. ……..I'm getting my post op PSA next week and will see what happened so far. I had a friend who had surgery and then was hafing issues again a few years later and he just had 3 month radiation/hormone therapy and said it went great. He wasn't getting the hot flashed and bad effects he was expecting…….PS The good thing about the after op biopsy by the pathologist is that they found that my Gleason 7 had turned from a 3+4 to a 4+3, so it was good it all came out.

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@bruto1

I agree. Hormone therapy can be tough . . . hot flashes, loss of libido and fatigue are frequent consequences. Been there. Doing that. At your age, the 18 month timeframe for ADG therapy seems extreme to me. Moreover, it shouldn't take 18 months to regain your testosterone level. Further, depending on the progression of your cancer and your Gleeson scores, hormone therapy alone wouldn't be a prudent choice in my judgment. Yes, hormone therapy helps quell the gasoline (testosterone) that feeds the cancer fire. However, there's no guarantee that it will kill all the cancer cells. An extended hormone treatment of the kind you described is more likely to be prescribed for someone who has had previous treatment for prostate cancer — surgery, radiation or other — and has seen a recurrence of an elevated PSA. In those instances, a testosterone inhibitor can keep the cancer at bay where earlier options — again, surgery, radiation or other — are no longer suitable for the patient. I suggest you get another MD opinion to make sure you're looking at all the options correctly.

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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.

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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 . . .

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@bruto1

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 . . .

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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.

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@mahowey5835

Want to go by Michael "T" for this group. Diagnosed with Gleason 7 Bi-lateral (unfavorable intermediate) cancer on 4-6-2020 via biopsy (TRUS procedure). PSA went from 6.4 to 8.5 roughly over the last year. I'm healthy and 62 (just retired – incredible timing huh). Waiting to find out if constrained to the prostate, but MRI imaging a year ago indicated that it was. Will have another on June 1. Although leaning in direction of surgery (RARP), not totally their yet. I like the probability of being cured with a good chance of having my original life span back! However, new forms of radiation therapy (IMRT, proton SBRT) may still be an option for me. Undecided. It seems to me that the post-op biopsy of the prostate and surrounding tissue is a huge plus for being cured with surgery. This of course not possible with radiation. Looking for any feedback, or key points learned from personal experience or research which could help me with this decision. Thanks a bunch!

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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.

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@norske46

Does anyone have experience working with university of Iowa hospital urology?

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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

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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.

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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

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

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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.

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