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 group.

@kenster

No, prostatectomy was not the only option, but at the time I was led to believe the cancer was still contained inside the prostate. I wanted to get rid of it so I chose prostatectomy. After surgery the doctor said my cancer was definitely not contained. It had already invaded other organs as a stage 4 cancer. So the long battle began.

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Why were you led to believe that? Did you have any inklings prior to the biopsy like high PSA testing over time? Pain?

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I had a urologist outside of Mayo that did a biopsy and a CT scan. Afterwards he told me it was contained. He was wrong.

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@drggkelley

Thank you for sharing your story. It is reassuring to hear about the positive outcome. Congrats on the outcome. What is ADT in a nutshell? I wish you continued freedom.

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Testosterone is an androgen. There are others in our body also. Lupron and other drugs deprive our bodies of androgen, which feed the cancer.

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@kenster

I had a urologist outside of Mayo that did a biopsy and a CT scan. Afterwards he told me it was contained. He was wrong.

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My husband' s urologist – surgeon in John Hopkins was surprised that biopsy was not done with CT scan instead of MRI where everything is a lot better visible. Sorry to hear about you. My husband had the same – urologist for 10 years said it is nothing and when I took my husband to John Hopkins with PSA 55, then it was stage III

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@drggkelley

Thank you for sharing your story. It is reassuring to hear about the positive outcome. Congrats on the outcome. What is ADT in a nutshell? I wish you continued freedom.

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androgen deprivation therapy, things like Lupron. It was described to me in layman's terms as causing the body to stop producing say testosterone, testosterone is a sort of prostate cancer food. There's a lot more technical information on the web.

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@drggkelley

Dr Walsh? What is the book? Do you recommend it?

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I highly recommend Dr. Patrick Walsh's Guide to Surviving Prostate Cancer. He is thorough and lays out options as you proceed with your treatments. His book has also helped me know what questions to ask my care team. I was on ADT for 24 months after my radical proctectomy and throughout my adjuvant radiation. With 29 months into this journey, I still have undetectable PSA, but I live quarter to quarter with the blood tests. My suggestion is to enjoy the gift of each day and keep a positive attitude. My pathology staging was T3b N1, so my focus is being a cancer survivor on a daily basis. Keep the faith as you proceed through your journey.

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@waynen

Testosterone is an androgen. There are others in our body also. Lupron and other drugs deprive our bodies of androgen, which feed the cancer.

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Lupron was the ADT I was on from Aug-2017 until May-2021.

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@jonbuuck

I highly recommend Dr. Patrick Walsh's Guide to Surviving Prostate Cancer. He is thorough and lays out options as you proceed with your treatments. His book has also helped me know what questions to ask my care team. I was on ADT for 24 months after my radical proctectomy and throughout my adjuvant radiation. With 29 months into this journey, I still have undetectable PSA, but I live quarter to quarter with the blood tests. My suggestion is to enjoy the gift of each day and keep a positive attitude. My pathology staging was T3b N1, so my focus is being a cancer survivor on a daily basis. Keep the faith as you proceed through your journey.

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"Being a cancer survivor on a daily basis." Love that. Thank you

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@kenster

Lupron was the ADT I was on from Aug-2017 until May-2021.

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Did Lupron eventually stop working for you? If so, what drug are you taking now. I'm Stage 3 and have been on Lupron since June of 19. Chemo last spring. PSA is 2.0 currently.

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Here is my history with Lupron. When I was diagnosed in 2011 I received 39 radiation treatments and 6 months Lupron, which put my PSA to undetectable. From 2012 to 2017 I was on no treatments and my PSA remained undetectable. PSA showed up again in 2017 and I went back on Lupron. PSA went back to undetectable, but only for 6 months. PSA began increasing and I began other treatments. However, I did not stop the Lupron. Doctors said I would stay on it the rest of my life, even after starting the Keytruda treatments in 2019, which took my PSA to undetectable. In June of this year I had a bone density test which showed the Lupron was thinning my bones so I chose to stop taking it. My last Lupron injection was May-4 . PSA still undetectable so far. Next PSA test is scheduled for Nov-11. I'm watching it close.

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@gregorylynn

I am 65 years old. I was diagnosed with prostate cancer about 5 years ago and chose to have seed implants (don't remember the technical terminology). I was very satisfied with the outcome. My father had the same treatment when it was a relatively new treatment. He died at the age of 93 of other causes after 23 years. So, I was shocked when earlier in 2021 I developed shoulder pain that would not go away. Recently I was diagnosed with advanced bone cancer in the shoulder. It is prostate cancer. I have yet to hear about recommended treatments, but I have to say that my world has definitely been shaken. I would like to hear from anyone who is dealing with metastatic bone cancer. Best wishes to all who have reason to be here.

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Gregory, I bet you world have been turned upside down with this punch in the gut of metastatic cancer. You're not alone. @norske46 @safari1949 @stoney1967 @ken82 and @waynen also have stage 4 prostate cancer. You might be interested in joining this discussion that @juangui started and use the auto-translation tool
– Yo Necesita apoyo de personas con metástasis de cáncer de próstata https://connect.mayoclinic.org/discussion/juangui/

I'll be interested to hear when you are presented with your treatment options. When will you know?

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@colleenyoung

Gregory, I bet you world have been turned upside down with this punch in the gut of metastatic cancer. You're not alone. @norske46 @safari1949 @stoney1967 @ken82 and @waynen also have stage 4 prostate cancer. You might be interested in joining this discussion that @juangui started and use the auto-translation tool
– Yo Necesita apoyo de personas con metástasis de cáncer de próstata https://connect.mayoclinic.org/discussion/juangui/

I'll be interested to hear when you are presented with your treatment options. When will you know?

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I return to Mayo Nov. 15th for more tests and consultations. I hope I will at least have a sense of direction afterwards.

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