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.

Follow the group. Browse the topics or start a new one.

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

@paul805 I'm new to this forum so forgive me if it's been covered earlier, but what is RP.

Thanks,
Dave

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Sorry, robotic prostatectomy.

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@colleenyoung

@tmclain, I'm glad you joined the Prostate group too. Was prostatectomy the only treatment you needed to have?

@dmadi61, cognitive impairment is so frustrating. While not the same cause, you may find some of the blogs posts in the MCI page helpful for dealing with memory issues. You can follow the blog here: https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/

Here are a few articles to get you started:
– Revisiting Brain Exercises https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/newsfeed-post/revisiting-brain-exercises/
– Coping with Memory Loss in Social Situations https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/newsfeed-post/coping-with-memory-loss-in-social-situations/

Have you developed any tricks for dealing with memory issues?

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Thanks for the links. I have zero tricks for the memory loss. Very Frustrating.

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@paul805

Sorry, robotic prostatectomy.

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@paul805 , Thanks, very interesting procedure.

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I found out last November I have Prostate Cancer. I'm considered Intermediate, not dire but need to move along. Have not had any procedures done yet except the PSA tests and a Biopsy but have only a few months of leeway as it is highly recommended I don't wait too much longer. I also had the Genomic testing done which put me above the median stats. I'm not interested in the radiation procedures, but really have no issues with having the surgery done. I was about ready to make the appointment but ran across the Focal Laser Ablation heat treated trials that are being done at Mayo and many other clinics/hospitals around the country. Wondering if anyone has had any experience with the procedure or knowledge to pass along. No one around here seems to know much about it. It has been used on other cancer(s) but is newer to Prostate Cancer. Thanks

Liked by stuckonu

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@ronan2011

I found out last November I have Prostate Cancer. I'm considered Intermediate, not dire but need to move along. Have not had any procedures done yet except the PSA tests and a Biopsy but have only a few months of leeway as it is highly recommended I don't wait too much longer. I also had the Genomic testing done which put me above the median stats. I'm not interested in the radiation procedures, but really have no issues with having the surgery done. I was about ready to make the appointment but ran across the Focal Laser Ablation heat treated trials that are being done at Mayo and many other clinics/hospitals around the country. Wondering if anyone has had any experience with the procedure or knowledge to pass along. No one around here seems to know much about it. It has been used on other cancer(s) but is newer to Prostate Cancer. Thanks

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Ronan, I don’t have an answer for you about the procedure however I’d like to ask a couple questions and share something I heard and found to be amazingly true. So 1 will you share where you live? 2 how did you find out about the Genomic testing?
Maybe you live out west or in a large city or a metropolitan area that include a few bigger cities?
I was very quickly disappointed with my VA doctors recommendation because he was suggesting what I considered to be old news and old procedures. Doing my own research I went outside of the area where I lived and had procedures done that he never knew about and he still doesn’t care about them. I’m sorry if my opinions disappoint others but I’m confident in what I found out and to me it is obvious that medicine is dynamic and it is changing/advancing often.
One of the best suggestions I ever received was from the president of a men’s group who advised me, more like warned me about support groups by saying that groups tend to rally around the procedure that the majority did. That same night that he warned me I found that the group I went to all recommended surgery. That’s the last thing that I would do. In fact that’s probably the only thing I would never do.
The other piece of advice that he gave me was to have the Genomic test. It would have been done but they want a biopsy less than 2 years old. I’m a couple of months on the wrong side of that number.
I also think that the future of cancer treatment is in immunotherapy and Spicer
Type in Spicer and 60 minutes if you haven’t heard of it

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@ronan2011

I found out last November I have Prostate Cancer. I'm considered Intermediate, not dire but need to move along. Have not had any procedures done yet except the PSA tests and a Biopsy but have only a few months of leeway as it is highly recommended I don't wait too much longer. I also had the Genomic testing done which put me above the median stats. I'm not interested in the radiation procedures, but really have no issues with having the surgery done. I was about ready to make the appointment but ran across the Focal Laser Ablation heat treated trials that are being done at Mayo and many other clinics/hospitals around the country. Wondering if anyone has had any experience with the procedure or knowledge to pass along. No one around here seems to know much about it. It has been used on other cancer(s) but is newer to Prostate Cancer. Thanks

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@ronan2011, deciding which treatments to do is really tough. I'm bringing @semeon into this discussion as he has had Focal Laser Ablation for prostate cancer and may be able to answer some of your questions.

You can learn more about treatment decision making in these discussions:
– PSA numbers: Questions about new treatments https://connect.mayoclinic.org/discussion/psa-numbers/
– prostate cancer treatment choices https://connect.mayoclinic.org/discussion/prostate-cancer-treatment-choices/
– Prostate Cancer: What treatments did you choose after surgery? https://connect.mayoclinic.org/discussion/prostate-cancer-3/

You may also be interested in this Video Q&A about Prostate Cancer with Dr. Erik Castle and Dr. Scott Cheney – Oct 3, 2019
https://connect.mayoclinic.org/webinar/video-qa-about-prostate-cancer-1/
@stuckonu, that's interesting that in support groups, men tend to rally around or advocate for the procedure that the majority did. Very good to keep in mind when making choices.

Ronan, may I ask why you reluctant about radiation therapy options?

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@stuckonu

Ronan, I don’t have an answer for you about the procedure however I’d like to ask a couple questions and share something I heard and found to be amazingly true. So 1 will you share where you live? 2 how did you find out about the Genomic testing?
Maybe you live out west or in a large city or a metropolitan area that include a few bigger cities?
I was very quickly disappointed with my VA doctors recommendation because he was suggesting what I considered to be old news and old procedures. Doing my own research I went outside of the area where I lived and had procedures done that he never knew about and he still doesn’t care about them. I’m sorry if my opinions disappoint others but I’m confident in what I found out and to me it is obvious that medicine is dynamic and it is changing/advancing often.
One of the best suggestions I ever received was from the president of a men’s group who advised me, more like warned me about support groups by saying that groups tend to rally around the procedure that the majority did. That same night that he warned me I found that the group I went to all recommended surgery. That’s the last thing that I would do. In fact that’s probably the only thing I would never do.
The other piece of advice that he gave me was to have the Genomic test. It would have been done but they want a biopsy less than 2 years old. I’m a couple of months on the wrong side of that number.
I also think that the future of cancer treatment is in immunotherapy and Spicer
Type in Spicer and 60 minutes if you haven’t heard of it

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The Oncologist at UVM Medical Center in VT suggested doing the Genomic testing when we went over my biopsy results. They made their own results and then sent the biopsies right out to Genomic people for the advanced results. Unfortunately those results also put me on the more aggressive side. There is also a very good support group here that I've been to a few times, and I don't find anyone pushing any particular procedure or saying that one is better than another. Everyone has a different story.. Some have been dealing with it for years and some are very new. They are all putting their info out about what did or didn't work for them, so information can be accumulated and used or not… The Laser Ablation could be one of the futures for treatment but it's newer and not totally accredited yet………….

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@colleenyoung

@ronan2011, deciding which treatments to do is really tough. I'm bringing @semeon into this discussion as he has had Focal Laser Ablation for prostate cancer and may be able to answer some of your questions.

You can learn more about treatment decision making in these discussions:
– PSA numbers: Questions about new treatments https://connect.mayoclinic.org/discussion/psa-numbers/
– prostate cancer treatment choices https://connect.mayoclinic.org/discussion/prostate-cancer-treatment-choices/
– Prostate Cancer: What treatments did you choose after surgery? https://connect.mayoclinic.org/discussion/prostate-cancer-3/

You may also be interested in this Video Q&A about Prostate Cancer with Dr. Erik Castle and Dr. Scott Cheney – Oct 3, 2019
https://connect.mayoclinic.org/webinar/video-qa-about-prostate-cancer-1/
@stuckonu, that's interesting that in support groups, men tend to rally around or advocate for the procedure that the majority did. Very good to keep in mind when making choices.

Ronan, may I ask why you reluctant about radiation therapy options?

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Hi Colleen………..Thanks for all the info. FYI my name is Dave. Ronan O'Brien is our cat who my wife named after coming back from Ireland. ……. I did see the October Video by the 2 doctors. I will check out your other links here.
As far as the Radiation, I've talked at length with the Oncologist//Surgeon and the Radiation specialist. At first I thought the radiation sounded great (why take out the prostate if you don't have to) but after talking with the surgeon my wife and I both felt more comfortable with that route. Various takeaways about the side effects, but my main thought is that if you do radiation and it doesn't get all the cancer or it comes back, the doctors are reluctant to do surgery as the next option because the initial radiation can cause complications for later surgery, but if surgery takes place, and cancer comes back somewhere else or or has escaped, then radiation and other modes are still available. I just had a friend go through that who had cancer in another area after surgery and he was able to do the hormone/radiation treatments and it worked great………….

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@ronan2011

Hi Colleen………..Thanks for all the info. FYI my name is Dave. Ronan O'Brien is our cat who my wife named after coming back from Ireland. ……. I did see the October Video by the 2 doctors. I will check out your other links here.
As far as the Radiation, I've talked at length with the Oncologist//Surgeon and the Radiation specialist. At first I thought the radiation sounded great (why take out the prostate if you don't have to) but after talking with the surgeon my wife and I both felt more comfortable with that route. Various takeaways about the side effects, but my main thought is that if you do radiation and it doesn't get all the cancer or it comes back, the doctors are reluctant to do surgery as the next option because the initial radiation can cause complications for later surgery, but if surgery takes place, and cancer comes back somewhere else or or has escaped, then radiation and other modes are still available. I just had a friend go through that who had cancer in another area after surgery and he was able to do the hormone/radiation treatments and it worked great………….

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Dave, I’m wondering about your approx. age and whether that was a factor in your decision to go with surgery. I’ve spoken with both a prostate surgeon and a radiation oncologist, trying to understand the trade offs before deciding. I am almost 76, and the surgeon was clear that a majority of men my age chose not to do surgery due to the higher risk of incontinence after surgery. Was that a factor for you? I will decide on surgery or radiation soon and your thoughts (or others who have faced this decision) would be very helpful to me.

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@ronan2011

The Oncologist at UVM Medical Center in VT suggested doing the Genomic testing when we went over my biopsy results. They made their own results and then sent the biopsies right out to Genomic people for the advanced results. Unfortunately those results also put me on the more aggressive side. There is also a very good support group here that I've been to a few times, and I don't find anyone pushing any particular procedure or saying that one is better than another. Everyone has a different story.. Some have been dealing with it for years and some are very new. They are all putting their info out about what did or didn't work for them, so information can be accumulated and used or not… The Laser Ablation could be one of the futures for treatment but it's newer and not totally accredited yet………….

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Dave, since you have had Genomic testing, you might want to take a look at this video on treating prostrate cancer focusing on biomarkers. It was produced about 4 weeks ago. https://www.practiceupdate.com/c/90568/67/11/. Practice Update comes out about weekly and has one edition just focusing on prostrate cancer. It is meant for medical professionals and can get pretty dense and beyond me, but I found this video very interesting. The report indicates that PARP inhibitors have been successful in treating some forms of prostrate cancer caused by breaks in targeted parts of our DNA. It also has been successful in treating other forms of cancer, including breast and pancreas, also caused by breaks in the same parts of the DNA. I've only recently become aware of the importance of Genomic testing after reading the book Lifespan by David Sinclair. It is possible that in future treatment of cancer might be determined by what part of our DNA had the breaks that caused the cancer. Hope this is helpful.

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I faced the same decision as you and Dave in 2016 and chose surgery. It is an intensely personal and emotional decision but here are some of the considerations:
I was Gleason 7 and cancer cells had probably not escaped the capsule; PSA was 12+ and was doubling every year; I was 74 and in good condition with the prospect of many years of life however, I had just watched a close friend die of prostate cancer and it was not pretty. I had to take some action. Review of the literature, especially the Harvard Annual Review of prostate cancer, confirmed that we really don't know much about prostate cancer and that the available therapies were fraught with awful side effects. The available drugs are for advanced prostate cancer and radiation is non-specific and kills all in its path; incontinence and impotence are common and the prospect for a cure much less than with surgery.
The genetic evaluation on my fresh biopsy tissue came out at 5 on a scale of 10 so was not much help (this is based on an algorithm developed by following several thousand men and looking for genes that are common in fatal and recovered cases – the data base is small and so not reliable). So that left surgery or watchful waiting. The trouble with waiting was that if it continued to grow, I would soon be too old for surgery and once it breaks out of the prostate and metastasizes the chance of a cure with existing therapies is low and surgery is no longer an option.
Surgery had a high chance of a complete cure with the downside being possible incontinence and/or a severely impaired sex life. But the alternatives were worse and so, after talking to some men who had done it, I opted for surgery. It was done at Mayo on a daVinci and turned out well. The surgeons were great! I am now 3.5 years post-op with a PSA still undetectable. The cancer seems to be cured but it won't be declared so until 5 years. Adverse effects are some very minor leakage that is easy to manage, an inguinal hernia 4 months post-op (caused by blowing you up with CO2 for the duration of the surgery so the micro instruments can get to your parts) that has been surgically fixed, some ongoing chronic urethral pain (2-3 on the 10 pain scale, can live with it) and ED. The ED is a problem with all surgery and your sex life will never be the same, but it is not bad, just different. You will have to use ED drugs or devices. But I will take that in return for a cure. One bonus is an increased urine storage capacity and a very strong stream; BPH is gone forever!!
Any time that cancer can be cured by surgery, it is a good idea to do it. I like the idea of a long life without prostate cancer.
Hope this helps.

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@vernonkent

Dave, I’m wondering about your approx. age and whether that was a factor in your decision to go with surgery. I’ve spoken with both a prostate surgeon and a radiation oncologist, trying to understand the trade offs before deciding. I am almost 76, and the surgeon was clear that a majority of men my age chose not to do surgery due to the higher risk of incontinence after surgery. Was that a factor for you? I will decide on surgery or radiation soon and your thoughts (or others who have faced this decision) would be very helpful to me.

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65 yrs old. Yes age is somewhat of a factor. Doctor says I am young enough and healthy enough that should help mitigate side effects. Hopefully the surgery is a "cure" if the cancer is contained in the prostate and is all removed I should be good to go. One of the reasons I am interested in the Laser Ablation is that they image everything to see what is there instead of just the biopsy cores. For the surgery or radiation I'm told they don't do the imaging…….

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@waynen

Dave, since you have had Genomic testing, you might want to take a look at this video on treating prostrate cancer focusing on biomarkers. It was produced about 4 weeks ago. https://www.practiceupdate.com/c/90568/67/11/. Practice Update comes out about weekly and has one edition just focusing on prostrate cancer. It is meant for medical professionals and can get pretty dense and beyond me, but I found this video very interesting. The report indicates that PARP inhibitors have been successful in treating some forms of prostrate cancer caused by breaks in targeted parts of our DNA. It also has been successful in treating other forms of cancer, including breast and pancreas, also caused by breaks in the same parts of the DNA. I've only recently become aware of the importance of Genomic testing after reading the book Lifespan by David Sinclair. It is possible that in future treatment of cancer might be determined by what part of our DNA had the breaks that caused the cancer. Hope this is helpful.

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My oncologist said in the near future that the picture of Prostate cancer could be very different, unfortunately I'm on a very short time frame right now before something needs to happen. The Laser Ablation has been in trials for a while but is not clinically accepted yet. I haven't gotten much info yet. The Genomic testing is also reasonably recent and the insurance companies (at least mine) does not pay for them yet as they claim they are not valid (maybe not the right words) for determining actual treatment……………..

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Horace1818, you have described my dilemma precisely. Your experience is very helpful to me at this very moment, as I am struggling with the choice. So thank you very much for taking the time to share your experience. At my age (75) I’m told there is a real risk from surgery for urinary incontinence for the balance of my life. That is a risk I’d like to avoid. On the other hand, the risks from radiation are equally real, including the unpleasant hormonal treatment prior to radiation. I know a decision has to be made, and I would like to make an evidence-based decision, but at this point there just isn’t yet a choice that is clear to me.

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