Living with Prostate Cancer: Meet others & introduce yourself

Posted by Colleen Young @colleenyoung, Mar 19, 2019

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?

I have been on Zytiga (enzalutamide) for almost a year and it continues to work for me. What side effects did you experience? How long were you on it? I fully expect it will stop working for me at some point and am interested in learning more about potential future treatments. I have not heard anything about Lutetium so share an interest in what others may know. In the meantime, try to stay positive (I know how hard that can be, but it is essential) listen to your doctors and do what research you can. I look forward to others responses to your question.

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@norske46

I have been on Zytiga (enzalutamide) for almost a year and it continues to work for me. What side effects did you experience? How long were you on it? I fully expect it will stop working for me at some point and am interested in learning more about potential future treatments. I have not heard anything about Lutetium so share an interest in what others may know. In the meantime, try to stay positive (I know how hard that can be, but it is essential) listen to your doctors and do what research you can. I look forward to others responses to your question.

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Hello, I had to stop taking Zytiga because I was having difficulty breathing. It started out as a small problem that was hardly noticeable. Eventually, I was afraid to get out of my chair. My blood pressure which had been steady at 122/77 had reached 155/95.
At this time I am not taking anything harmone therapy and my PSA number is 80. I was on Zytiga for approximately 6 months.

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@philnob

Hello, I had to stop taking Zytiga because I was having difficulty breathing. It started out as a small problem that was hardly noticeable. Eventually, I was afraid to get out of my chair. My blood pressure which had been steady at 122/77 had reached 155/95.
At this time I am not taking anything harmone therapy and my PSA number is 80. I was on Zytiga for approximately 6 months.

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Thank you. Thus far I have not had either blood pressure or breathing problems, praise God. My PSA is riding between 5.0 and 8.0 at present. That is down from 80.0 or so a year ago. I suspect all that can change at any time. Good luck in your decision-making. If you can, please keep us informed of your decision and progress.

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I'm Alan and have been on the Prostate cancer journey for 11 years. I was diagnosed with PC in late 2009 after my third biopsy in about a years time period. The biopsy showed Gleason of 7's and 8's on a couple of the nodules. There were 12 samples taken.. I knew from the beginning that if I was diagnosed I would choose surgery even though I did briefly look at brachathapy (sp), radiated seeds. The big decision was to decide on "open" surgery, the gold standard at the time, or "robotic" surgery. I talked seriously to two surgeons. The older surgeon was the open advocate who had been performing such surgeries for 20 years, and the younger was the robotic surgeon and performed well over 500 surgeries. It almost came down to a coin flip but I choose robiotic. Mainly due essentially to no cutting and less recovery period. Plus some input from a couple non surgical people. I had my surgery in January 2010. Its possible that decision was not the right one but since I' still living and in pretty decent shape I'm not sure if the route would have been different. it was discovered in a matter of months I still had some residual cancer and as of now I'm still being treated for it. My surgeon said all the area surrounding the prostate tested clear following surgery. Somehow remaining cancer, based on an increasing PSA was discovered. Within 3-4 months I had 35 rounds of radiation and then I was in a trial program involving 10 chemo treatments along with Lurpon injections over a 10 week period. I tolerated all this fairly well with no major down time. I had MRI's, CT's and bone scans over this time and still today I have those scans done every 18-24 months. I'm now on Lupron with injections every 6 months. My PSA has been less than one ever since I started Lupron about 4 years ago when PSA, which had been staying in 3-5 range, began to gradually increase. I'm still diagnosed as having microscopic metathesis cancer. The Lupron does cause some side affects as have been mentioned by others but nothing major in my case. Bone health may be one of the "hidden" ones which needs to be monitored with various blood work and bone density scans every two years. Calcium supplements and Phosamax also need to be taken. I'm 79 YOA and still on the journey and feeling quite well with no limits on my activities. I visit my oncologist every 3 months have labs at same time and the scans as mentioned above. Scans only show some suspicious spots but no identifiable tumors. I'm currently being treated at UT Southwestern cancer hospital in Dallas and did have a second opinion at MD Anderson about 4 years ago. My biggest concern is if the cancer develops an immunity to the Lupron as I have heard can be the case. I know there may be other options in that case so I remain optimistic and feeling very blessed for the long term.

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Hi Alan, I think your story could've been mine. When my urologist did the biopsy 2.5 years ago and found samples with Gleason 6 and 8 cells, he talked to me about surgery and referred me to a radiologist. I read that the best success for treatment would be at a cancer center. So, I went to Mayo. They decided that before they could determine treatment they should first determine if the cancer had spread to other parts of my body. They did a scan of my bones and MRI of my organs. Fortunately, they didn't find anything. They started Antigen Deprivation Therapy as my first step to slow the progress of the cancer, reduce size of prostrate and kill any cancer cells that might be undetected. The ADT was continued for 18 months. I also had Proton Beam therapy. The use of at least short term ADT is the recommended treatment for patients with Gleason scores of 8 to 10. I'm not sure if urologists who do surgery normally use ADT, but if you have the higher risk Gleason scores of 8 to 10, it's worth asking about it.

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Greetings, my name is Richard. I was diagnosed with metastatic prostatic cancer in Sept. 2020. A year prior, during a routine checkup, my PSA score was OK, but later in the spring of 2020 it had risen to 4.69, so after a series of tests, including a bone scan and bone biopsy, the diagnosis came back as metastatic prostate cancer. The cancer is aggressive and tumors have blocked my urethra and ureters so I have bilateral nephrostomy tubes for passing urine. I have been on hormone therapy — Leuprolide (Lupron) since the diagnosis, and recently the doctor added Erleada (Apalutamide). My latest PSA test in Jan. 2021 was down to 2.1 which is encouraging. My blood test values are also trending positive, so right now it is a waiting game to see how well and how long the drugs will manage the symptoms.

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You might want to have genome test done to see if they can Isolate the gene that caused the mutation. There are gene repair therapies available for some defective genes.

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Diagnosed with prostate cancer in September of 2015. Prostate removed December of 2015 and PSA numbers stated showing up 9months later. Majority of my cancer kept coming back in my left tailbone area. I’ve had two ablations done on tailbone spots and two sessions of high intensity radiation. I’m currently undergoing 20 sessions of radiation for a new spot on my left hip and another spot near my bladder in the prostate bed area.

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Hi, I was treated in 2005 at Memorial Sloan Kettering in NYC for prostate cancer and had 25 radiation sessions after seed implants and no surgery. The cancer never spread. In 2016 I developed a fistula connecting the colon and the bladder and it looks like around the path the radiation took. I have frequent UTI's and sometimes kidney infections so am on daily antibiotics and have been advised by Mayo to have my colon and bladder removed to resolve the infections. I have lived with the occasional infections so far, about 5 times a year, which are treated with stronger antibiotics. You might want to discuss this issue with your doctor and see if they can mitigate the radiation near your bladder so this doesn't become an issue. The radiation and seed implants did the trick and PSA is less than .1 after 16 years.

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@windom1950

Greetings, my name is Richard. I was diagnosed with metastatic prostatic cancer in Sept. 2020. A year prior, during a routine checkup, my PSA score was OK, but later in the spring of 2020 it had risen to 4.69, so after a series of tests, including a bone scan and bone biopsy, the diagnosis came back as metastatic prostate cancer. The cancer is aggressive and tumors have blocked my urethra and ureters so I have bilateral nephrostomy tubes for passing urine. I have been on hormone therapy — Leuprolide (Lupron) since the diagnosis, and recently the doctor added Erleada (Apalutamide). My latest PSA test in Jan. 2021 was down to 2.1 which is encouraging. My blood test values are also trending positive, so right now it is a waiting game to see how well and how long the drugs will manage the symptoms.

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Welcome @windom1950 and @aschneid54, I invite you to browse the discussions of the Prostate Cancer group (https://connect.mayoclinic.org/group/prostate-cancer/). I'm confident that there are many discussions to which you can add your experiences and tips for others.

Additional, here are a few discussions directly related to metastatic cancer:
– Stage 4 prostate cancer treatment options https://connect.mayoclinic.org/discussion/stage-4-treatment-options/
– Talking Frankly about Living with Advanced Cancer https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/

Any questions that you'd like to explore?

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