Living with Prostate Cancer: Meet others & introduce yourself

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.

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.......

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.................

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.

I understand your anguish since I have been there. No one can make the decision for you and the crude state of our knowledge and therapies complicates the issue. I am happy to help

@vernonkent, I am away from my Connect neighborhood right now. However, I monitor this subject for my life partner Jay. We are health buddies as well and so attend all medical meetings, treatments, and referrals together. Jay is 75.

When he was 73, and after an MRI biopsy, he came away with a Gleason score of 8 and a strong suggestion that the cancer cells were contained in the prostate. The position of the tumor was very important....which side, top or bottom, etc. especially taking into account the bladder margins. Not to be ignored was the discovery of horseshoe kidneys and disappearing adrenal glands.

Jay and I chatted to make sure we had both heard the same things from the same clinician. Because his father and grandfather had prostate cancer, Jay felt that his number was bound to come up. His father had indicated to Jay, his son, that his life was essentially over when he ran into urinary issues.

Jay made his decision not on what happened to his dad but on what functions he valued the most. He is an outdoorsman we call the "Park Superintendent." He chose surgery. It went well and together we made it through the post-surgery period. Within a few months, he was completely continent and the follow-up tests were looking good. The amazing patient-centered care practiced by Mayo was outstanding.

So now, he is out wrapping bushes for winter and I am on Mayo Connect with you. Good night. Chris

Thanks for all the detailed info! As I said in another post, everyone has a different story and different reasons for how they approach treatment and I'm glad you found what worked for you! There is much in your email that has gone into my similar thinking. In particular your little section on radiation and also surgery as a chance of a cure is kind of where I am at on that. I would rather not do anything but unfortunately have passed that stage and can't wait for the next generation cures so have to work with what is here now. I'm Gleason 7 (3+4), and PSA is 8.7 at the latest. I've only gone up about 1 point in the last year which is good but with the Genomic test added they think I should act. I'm about 2/3 up the scale on that......... I've been taking LOADS OF SUPPLEMENTS for a year, some on advice of a cancer naturopath and some from what I've picked up here and there so that may be a factor in the slow rise. Many have been studied with cancer in mind and some have had research studies done and published. In any event even if they are not stopping the cancer, they are really good for the immune system. Naturopath says ALL MUSHROOMS are good (store or wild) (either eaten for the beta glucan or supplements), Stamets 7 has 7 diff. cancer related mushrooms in 1, also Chaga Tea for drinking or Chaga alcohol extract by dropper, Curcumin/Turmeric, Melatonin, POMI-T supplement. The supplements can also be taken continually after to help slow or mitigate future returning cancer. The Naturopath unfortunately does not have a magic cure but works with health and immune system before and after treatment which he also recommends doing.

@artscaping Thank you for your helpful response. My situation is similar and your experience with surgery is quite helpful as I consider the options. It helps to know someone near my age can have a good active lifestyle after surgery. Much appreciated.

Hi, my name is Dave and I'm new to this group but have been on the Barrett's Esophagus page for a few years. I live in an area of Oregon that only has 1 Urologist in 70+ square miles and he should have retired years ago. I'm might be jumping the gun here since I've yet to get a Gleason score since my previous MD who did the biopsy took only 8 cores, none came back positive but all showed HGPIN. Following the Mayo MD's recommendations to my questions on the video chat recently and since my PSA # is 17 and my Free PSA # is 6 I got a contrast MRI which showed a Lesion of 2.2 x 1.1 x 1.5 cm. In the Radiological report, it states the PI-RADS v2 Assessment Category: 5 Very high (clinically significant cancer is highly likely to be present). My new Urologist (70 miles away) has since scheduled me for a Fusion (MRI Guided) biopsy for next Wednesday. The new practice has a # of Urologists but they primarily operate and if I choose an operation I would rather go to large Medical Center; but my question for the group is what happens if I do travel and complications happen after the operation would I have to return to the operating hospital which would be at least a 7 hr trip? Who has traveled to get an operation many miles and what did you do for followup? Because of this I'm leaning toward one of the radiation cures since from what I can tell there are much fewer after treatment complications. Thoughts anyone. Thanks in advance, one stressed out Dave

Hi, Day 1 for me post biopsy result...with cancer diagnosis of Gleason 6 at age 52. I am reading about how 6 is low risk, but that 50% of Gleason 6s turn out to be higher. I am looking for information on Molecular Tests, Genetics, or other things I can do to avoid risk of it being more aggressive or metastasizing if I choose "Active Surveillance".