Confused and sad

Hi Michael,
First of all, I’m new to the forum, so I did not see Mel’s post until now. Second, I don’t see my post as negative at all. I was just highlighting the importance of quality of life. Sexual function may not be important to some, but the loss of it is devastating to others. Sure, it may not be worth dying for, but hearing the old “just be happy you’re alive” trope feels like a slap in the face. So many here are coping with the loss of of components if life we once took for granted, like sexual function and urinary continence. We don’t need need to hear that these losses are unimportant, especially not in a forum that people turn to for support.

Hi all, this is a gentle reminder about the purpose of Mayo Clinic Connect and the Community Guidelines that help keep the Mayo Clinic Connect community safe, supportive, inclusive, and respectful.

Mayo Clinic Connect is a welcoming online community where patients and caregivers should feel safe in sharing their experiences, find support and exchange information with others.

The second rule in the Community Guidelines (https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/) underlines:
2. Remain respectful at all times.
- Exercise tolerance and respect toward other participants whose views may differ from your own.
- Disagreements are fine, but mutual respect is a must.
- Realize that sarcasm and joking will often be misunderstood.
- Be inclusive. Not everyone shares the same beliefs. Don't impose your beliefs on others.
- Personal attacks against members or health care providers are not acceptable. Such posts will be removed.

We share our experiences. Above all, it's important to remember that we only have words on a screen to express ourselves without the benefit of body language and tone of voice.

I believe that the recent messages show that words matter and that the members of the group care. Thank you for being understanding, so you can continue to support each other through the tough stuff.

You said your Dr was wrong about everything. Can you give me pointers on things to do or try after lupron. My husband has went through prostate cancer and we used lupron and hifu. It's a new procedure that was just fda approved in the US.

You are so right, encourage ppl, don't trivialize the chances.
I've been dealing with PC for 7 years now but just now going to start chemo. I refuse to let PC define who I am though. It will not depress me or alter my relationships. It is what it is, deal with it and give thanks evert day for what you have.

This disease is a confident killer. I've been married 53 years to my husband and the diagnosis was not easy to hear. It caused great distance between us for close to 5 months. We finally got our footing after doing research, changing doctors and deciding that we're going to live life. My husbands PC is non-operable, stage 4. Please give him time to adjust to his situation. Everyone is different.

RIGHT ON

Hello, 66 yr old here, PSA was 14 at HI-FU attempt, Gleason 4+3=7. Was told it was roughly 60 % success rate, However, I was unsuccessful with my Hi-FU, and developed klebsiela days after procedure, prolonging the healing process. As it was explained to me, HI-FU ( University of Chicago Medicine) was not able to reach anterior portion of prostate due to distance effectiveness, missed, and/or resilience to treatment. PSA dropped to 8, hovered there for a year or so, and began to rise back to 10. Biopsy confirmed cancer still present. Extremely disappointed with results, I am now (2 years later) in the 4 mth Eligard and 28 sessions of SBRT routine. After Pet scan revealed some recurrence in previous HI-FU treated areas, I declined a repeat HI-FU and declined trying Tulsa, in my opinion , a cousin to the Hi-Fu. Everybody is different, I hope it works for you. BTW, I was not prescribed Lupron with the HIFU treatments, that could make a difference. Hopefully I will get this all behind me by spring, best of luck to everyone.....Happy New Year

That has to be so very difficult. My husband became a completely different person because of prostate cancer treatment. He needed a lot of reassurance & comforting to become secure with our relationship. His complete loss of sexual desire was unexpected. We expected ED but not complete lots of interest. I am fortunate that he still loves to hold hands, cuddle, hug, etc. And he still enjoys commenting on my butt LOL. I would continue to try reaching out to your guy with reassurances of your love for the essense of who he is, as that is still there. In addition to the extreme fatigue of radiation & redefining his future, he’s quite probably feeling that he is “no longer a man”. There can be so many mixed emotions that a man may never have felt before. Get initiating contact without pressure & perhaps read up on the psychological impact of prostate cancer. Hopefully he will come to a point of confidence & security & appreciate the love you have for him.

For myself, a 68 year old with two 4+4's and 9 weeks out from my RARP, I find myself a very different man.

Before you ask, yes it was nerve sparring 1.5 bundles.

Incontinence is improving but ED has not changed.

I was told that sex would be different, not how different. For me, it's been a huge blow to how I feel about myself.

I have tried Cialis and a pump and wound up with a blueish penis and a 5 minute erection. I will follow on with penile rehabilitation in hopes of recovery in 1-2 years.

Am very happy to be done with the cancer but the loss of my sexual life is profound. Life moves on and we all have our own journey.

Dmccarthy104 I myself am only 7 months post surgery. I posted Trimix injections good or bad. I would encourage you to read there are so good comments from others and I just posted an update on there. Yes sex is different I myself shed many tears over the changes but now have mostly accepted these changes. Time helps. It is not easy but we can get through this. Life is good it will get better and easier for you. My best to you