Living with Prostate Cancer: Meet others & introduce yourself

Sorry, I forgot to State my age- 76, 77 in September

Thank you for the opportunity to comment on what I feel to be my support group. My PSA (quarterly checks) took a jump to 13.5 about a year and a half ago (at 81 years of age). Due to this, and my family history (father and brother), I had little doubt about having PC myself. I subsequently had five scans and two biopsies, which all confirmed that it was aggressive and had metastasized. In order to hasten my treatment I was put on Bicalutamide for a month. Next came Abiraterone and Eligard and that is my current regimen. My cancer is now dormant, and I feel great, but I'll have to be very careful to not wake the monster up. In the meanwhile I'm enjoying my good quality of life for as long as possible. A good lifestyle, including diet and exercise, should prove to be beneficial and allow me to stay in the upper median for survival.

Guys, I have PC with mets to bone in 5 places. Feeling good after chemo. And, my testosterone is so low none of my equipment works. My husband is understanding and says the main reason he loves me has nothing to do with sex, but he has a very strong sex drive where mine is non-existent now. Does anyone else have a similar experience? The oncologist I go to has no support group, social worker or counselor they can recommend. I need to talk with others and hear how they cope with this situation. I know this has nothing to do with cancer treatment per se, but having to face this huge change in my intimate life with my spouse causes me tons of stress.

I was hoping someone else would address this issue. My husband has PC and is taking Xtandi (pills) & the Eligard shot 2 X’s a year. We have only been dealing with this since March. He also had it spread to a part of his pelvis bone and lymph node. We have no support group as we are only dealing with a urologist. My husband has low testosterone (175) and his PSA is .9 because of the medication he is using. The doctor recommended using a penile pump which is successful some of the time.
My husband says it all starts with mindset but it’s very frustrating.

Thank you for sharing with me so valuable, and private information about your experience. I am 72.5 years old, and well aware of the fact that sooner or latter I will suffer from unbearable pain if my cancer metastasize. Since I also suffer from BPH, I read that the according to new research, my enlarged prostate, will not the cancer cells to spread so easily, so I am hopping that sooner or latter I will die from the causes other than prostate cancer. I realize that maybe my thoughts to some extent are childish, but the only thought about negative side effects of prostate cancer treatments make me sick, so I decided to take my chances.

Thank you for sharing with my your thoughts. As you mentioned, all choices are individual, and even if I am not sure about my future, I decided to stay with my decision, and wish for the better outcome.

Ed:
God bless you man, and good luck.
It is what you are comfortable with at this time, and no one can say that it is not right for you.

It is monumentally frustrating at times. Mindset is where we start and it is important. And, supportive spouses, like mine, are supremely important to thriving within a life with PC and its consequences. A life we did not choose or foresee. And, I am grateful for being able to live a life still worth living.
That being said, a healthy sex life is extremely important to having a full and compete human life. I miss it and get very emotional about the loss. And, I feel damaged by this illness and angry. Nothing about this is fair and my cancer doesn't care. I have to be honest. I have built a wall between me and my husband to some degree out of shame that my equipment no longer works. To be graphic, my penis seems to have shrunk to the size of a three year old. At least it seems like it to me.
I have no perfect answer for you. For me, it means asking my husband if I have told him I love him today. Then when he says no, I hug him, kiss him, and say it, then hug him like it will be my last. I do this everyday. Cuddling in bed and helping him enjoy himself in other ways is a work in progress. Touch is so important and necessary. It is far from the same, but I treasure what we do have.

Ed, You gotta do what you gotta do.

Hello Ed, your situation is exactly the same as mine. I was diagnosed with Gleason Score 7 (4/3) in the Fall, 2022. I did significant research for two months to ensure I would make the best decision for my situation (healthy, active, no other medical issues). I decided to go with a radical prostatectomy because the cancer was localized to the prostate. The surgeon and his medical team at Mayo-Rochester were amazing (minimally invasive robotic assisted). In the end, they took the prostate, seminal vesicles, and 7 lymph nodes. The final biopsy was good, negative margins and no cancer in the lymph nodes. There is still a chance for the cancer to come back, but I feel so much better knowing that the cancerous prostate has been taken out of my body.
I agree with other comments, every situation is unique and each person needs to make their treatment decisions based on their individual expectations for life going forward. For myself, I am living with the ED side effects, but have done well regaining continence. Compared to living with metastasized prostate cancer, I see the trade-offs as minimal. My uncle died of metastasized prostate cancer and the pain was significant for years. Looking in from the outside, this lay person would recommend addressing your prostate cancer while it is still localized. My opinion - A few weeks of pain from surgery are significantly better than pain for the rest of your life.

Take care and best of luck with your decision.

Jim