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?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@roberdc

Greetings.
My name is Bob Clark. Just diagnosed 2 weeks ago with lower right quadrant 30% involvement. Waiting on a body & bone scan - a baseline I am told. My doctor is initially suggesting surgery since it is localized. This sounds like a good option for me.
My immediate fears beyond treatment is economic. I am 62 and hope I have enough saved to retire if needed. But I do want to keep working. My prayer is that I can return to work after the surgery catheter is removed.
Beyond that I am a marathon runner and hope to stay very active.
Thanks for this group.

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roberdc: recovery from prostate surgery was not disabling for me at 72 yrs old. Catheter was removed at 10 days and I actually was able to fully function thereafter "mentally". Slowly returned to walking, played a round of golf at 7 weeks and VERY strictly observed limited lifting direction, including light weight lifting, for 2 months.
Surgery does not have to be disabling if performed by an experienced surgeon. Many on this site have sought care at a recognized center of excellence. Continence recovery can be an issue (was not for me). ED is a separate issue.
this was intended to address your early fears.
this is a major surgery, I and many advise reading Surviving Prostate Cancer by Patrick Walsh, MD, and other resources such as the free Patient Guide available from the Prostate Cancer Foundation (pcf.org).
there is much to learn and consider, and you are at the beginning of this trip.
Best to you.

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I agree with Roberdc and he gave good positive advise. Post RP with no new meds should soon be like your prior life. The surgery and the post surgery catheter sound worse than they really are. If you are on meds (ADT usually) it takes a some adjusting to but it is doable. This business of staying alive can be inconvenient but it is a CANCER and staying alive is very much worth it. Good luck. We have all been where you are now.

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@michaelcharles

roberdc: recovery from prostate surgery was not disabling for me at 72 yrs old. Catheter was removed at 10 days and I actually was able to fully function thereafter "mentally". Slowly returned to walking, played a round of golf at 7 weeks and VERY strictly observed limited lifting direction, including light weight lifting, for 2 months.
Surgery does not have to be disabling if performed by an experienced surgeon. Many on this site have sought care at a recognized center of excellence. Continence recovery can be an issue (was not for me). ED is a separate issue.
this was intended to address your early fears.
this is a major surgery, I and many advise reading Surviving Prostate Cancer by Patrick Walsh, MD, and other resources such as the free Patient Guide available from the Prostate Cancer Foundation (pcf.org).
there is much to learn and consider, and you are at the beginning of this trip.
Best to you.

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@michaelcharles Thanks for the abundance of info. I appreciate the reality of knowing the long term recovery needed. I have Walsh's book. My urologist told me to read it and to focus on Mayo Clinic sites.
Blessings on your recovery and thanks for the encouragement.

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@hbp

I agree with Roberdc and he gave good positive advise. Post RP with no new meds should soon be like your prior life. The surgery and the post surgery catheter sound worse than they really are. If you are on meds (ADT usually) it takes a some adjusting to but it is doable. This business of staying alive can be inconvenient but it is a CANCER and staying alive is very much worth it. Good luck. We have all been where you are now.

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@hbp Thanks for the reply. "Surviving" is a term I am coming to grips with when discussing this. Take care and blessings on your journey.

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@web265

Hi @roberdc ,

It's quite the jarring piece of information isn't it. We've all been through that and you'll get past it. I've had the surgery and was back to work within 3-4 months. My profession requires medical approval from the federal Govt and we all know what a daunting bureaucracy that can be.

In the majority of cases the cath comes out in 10 -14 ish days, then you have to be very careful for a month or so regarding minor incontinence and then off to work you go (at least that's when my doc released me, the Feds had another idea...). If I recall correctly I was back to work after the second PSA test, 3-4 mos, it only took that long because the feds require your PSA to be below a certain level.

I'm jealous of your discipline being a marathoner, I could never manage it. I do run very regularly though. It took me about 3 mos + before I could manage running without minor leakage though. Don't be discouraged if that takes a little longer. It did come back !

Kegels, Kegels, Kegels..if you do decide on the surgery, you'll need to become familiar with this exercise, both before and after surgery. My doc didn't even mention it, some docs send patients to a special PT for it and all manor of recs in between. I'd ask the doc for the most aggressive exercise training he's comfortable with regarding this. Your a marathoner, this is a cake exercise for you!

Best of Luck to you for the best outcome possible!

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"Jarring" is a good word. The timeline looks doable. I work at an oil refinery and I hope I can return to work within a few weeks. Our medical is super conservative about my being able to climb and and walk. Anyway, I thought kegels were for women! Guess I am the student.

Take care and blessings on your journey!

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@bens1

My Urologist requested a specific doctor to read my Prostate MRI. When I asked him why, he basically indicated that the number of doctors skilled enough to accurately read the image was limited. That only served to confirm the choice of having the Decipher test as a back up …for everything…like a second opinion.

I hear the industry is trying to use artificial intelligence to improve these type of imaging diagnostic readings but obviously its not there yet.

I think my RO is great, with skill, experience, a comforting personality, and she answered all my questions including a couple with” I don’t know”. Many RO’s seem to subtlety avoid answering a question with “I don't know “ and there are, as a layman, many grey areas unfortunately, that do not have clear answers. It’s hard to know, when to know, that your answers to questions will no longer yield further insightful information that may help you make a better decision. I had to sort of minimize the grey areas the best I could and at some point accept some of the unknowns and make the best decision I could as a collaborative patient.

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Hello,
My MRI day before surgery stated Seminole vesicle Cancer was :Absent
After Surgery, Pathology report
Said a small amount that was removed

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Hi,
Diagnosed with prostate cancer in 2012. Has anyone had breathing difficulties
while taking Relugolix.
Thank you,
Philnob

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I am Tommy from mass currently living with stage 4 prostate cancer being treated at Dana Farber My journey has been crazy dealing with this In 2015 I had my yearly Physical exam, my regular PCP had another Dr covering for him During the exam I asked if he was going to do a physical exam to check my prostate because my regular PCP always die He answered that he wasn’t because my PSA were really good and also his fingers were to short Next year. 2016 my regular PCP who always did a physical exam did feel something in my prostate that concerned him He told Me my PSA were great but he felt I should definitely have a biopsy done ASAP The oncologist/surgeon did the biopsy I was discharged went home and had started to have blood flow out ofmy rectum I went immediately back was admitted and I had Tampex inserted in my rectum and removed as needed till the bleeding had stopped At that time the O/S informed me that my biopsy came back with a Gleason score of 3+4 and his belief was that the cancer was just in the prostate because of the very low PSA score I consulted with the surgeon and a radiologist and decided to have the prostate removed based on the information I received about the recovery process I was a self employed contractor who at the time wore all the hats and it would have. financially ruined me if I could not get back to work right away in a high functioning condition After the surgery which was done microscopically The Dr said he did not see any cancer and that he got it all when he removed the prostate My PSA we’re great till they started to rise in 2020 I elected to end my care at Lahey and get treatment at Dana Farber I was started on Hormone therapy then did 6 weeks of radiation This lowered my PSA for a while after during this time I was also dealing with Parkinson’s disease that was not being treated because I was ghosted by my original PCP at Lahey and a Nurse Practitioner at Brigham and Women s who said it was a medication I was taking My prescribing Dr for that medication said that I was on the very minimum dosage and at that dosage could not cause the tremors in my left arm and side with the problems I was having with my balance I stopped taking the medication at the NP advise and when 6 months + had passed and was finished my other treatment I was prescribed Cordoba Levodopa I was told that if it stopped the tremors and worked on my balance I definitely had PD which it did When I was going through the radiation and hormone therapy and untreated PD it was torture every day Then less than a year my PSa started going up I was told by my oncologist at Dana I should start Hormone Therapy right Away then do chemotherapy I asked how long would I live if I elected to not do the treatment he said a tear maybe two and if I did the treatment 4-5 I decided I would rather live maybe 2?good years then go through what I thought would be hell for 4 or 5 I immediately started to work on getting my affairs in order But soon realized I would not ever have enough time I elected to do do the Chemotherapy which I just finished and the hormone therapy that I will be doing from now on with a new team at Dana Farber because my PD was being treated this time along with the Chemotherapy And Hormone Therapy I had by far less of a hard time going through it Currently My psa are good and I am being treated for my PD by a neurologist at the movement disorder clinic at Mass General I have had a real hard time with most of medical drs over the last 6 + years getting tests I wanted and needed based on advice I gotten from people I know that have gone through this Case in point I had a problem with my left eye that I thought was a floater but after a few examinations at Ma eye and ear and doing my own research suspected it was a tumor behind my pupil The specialist I finally saw concurred with me that it probably was She asked me if I had a pet scan done and if I had and any cancer was showing in it It would confirm that it was a tumor and I would be scheduled right away for proton radiation therapy During this time my first oncologist who gave me pushback on having a pet scan done when I had asked for one way before and during this because he wanted to watch my psa which had gone from around .45 to 3.00 in a matter of months I ended up demanding he order a pet scan immediately so I could schedule the proton radiation on my eye I convinced my ophthalmologist melanoma specialist to schedule the radiation consultation and appointment ASAP This was a Thursday told her we could always cancel it if I did not get the pet scan or and or confirmation of cancer in other parts of my body We made the appointment for the following Wednesday for the consult and Thursday and Friday for treatments I got pet scan Tuesday morning cancer was detected in 3 places and I kept my appointment for the consultation and the radiation That long time period from initial examination to treatment left me with a more damaged left eye that got progressively worse I believe because of a drs resistance to ordering a pet scan because to get insurance to approve payment for it involved the doctor doing paperwork he was trying to avoid I understand the medical system is in crisis because of the pandemic and it’s aftermath with medical personnel leaving because of burnout and being under staffed But tell me how hospitals that cannot properly take care of the patients they have now are the same ones spending millions on TV Radio Print ETC marketing to and for new patients

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Any one else dealing with multiple diseases I am a recovering alcoholic//addict 20 + Years clean and sober being treated for stage 4 metastatic prostate cancer , Parkinson’s disease, depression and I have anxiety With both shoulders having had surgery on them one really painful now i do my best for one moment at a time in one day at a time

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Hello, Is there a site that list Drs at Mayo that do Robotic Prostechtomies?
And How many they have done?
Thks,
Doug

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