Finding Support Groups

[gbpmdjd]

I am 84 and diagnosed with PCa in 2014. I had a multi-specialty work up Sibley Hospital in Washington DC (Johns Hopkins staffed clinic). No mets found. I was given 1 option, External beam; 70 Gray treatment went smoothly with no SE. I was given one injection of Lupron prior to the radiation. PSA went down of course. Following treatment PSA returned and really never settled down with a nadir but continued to rise. Doubling times about 12 months. The Oncologist proposed 2 options: 1. do nothing and haver a bone scan yearly. Wait for mets before treating. This would avoid SE of ADT and he asserted that survival would be the same. 2. Treat the PSA, . The watchful waiting went on for several years with doubling times of 8-10 months. After the isolation of COVID we moved to be closer to family (Utah). The new oncologist suggested Regulix oral ADT intermittently with 6+ month holidays. PSA was 130 and went down to less than .4. When stopped for the treatment holiday it rose to 18 in about 4 weeks so I was told that ADT would now be continuous. The new course was ADT until PSA started rising again. I asked about the yearly bone scan and was told it was not needed. As expected all the SE of ADT have developed.

When initially diagnosed I was referred to a couples support group. I was getting radiation and had no side effects. The group spent a lot of time talking about ED, etc.so I stopped going. Now after a year of ADT and in Utah I believe that support groups are necessary. I had a visit with a Nurse Practitioner for urologic symptoms and I mentioned the frustration of adjusting to life without any sexual activity. This NP then initiated a discussion which was amazing. Lots of information and useful things to try. Never once did she refer to age. This was so helpful that it was obviously time to find couples in similar situations to talk to. I raised the issue at the University of Utah Oncology Clinic and was told that support groups were not needed. I even offered to try and start a group and was told they would not support such an effort. This has me wondering if their approach to ADT with no diagnostic testing like bone scans is sound. It seems that I am a PSA number and nothing more.

Sorry for being long winded but I think this issue is important for others, not just me so I seek the wisdom of this forum. Thanks in advance.

[Tall_Allen]

It's a big topic of discussion in most of my support groups. It doesn't come up much in my advanced PCa support group because all of the guys take ADT, which eliminates libido. But libido is in the mind, and I've talked to one or two guys who still have libido in spite of no testosterone. The need for physical intimacy may exist in spite of loss of libido.

Your PSA is a good guide as to whether a bone scan is needed. Why do an extra scan if you don't need it?

[Yank66]

It seems to me that if you feel a need to connect with people who are in a similar situation and have an understanding of what you’re going through, you need a support group regardless of what the doctor/PA says. Most university hospitals have social workers on staff. Inquire with them if there is a cancer support group. Online groups exist and may be more specific to prostate cancer.

[KarkMuzio]

I help facilitate a small PCa support group here in mid coast Maine. We normally have 7 to 10 men at our get togethers. Our group provides a monthly time and place where men can meet, discuss, vent, ask questions, sympathize and make new friends. Everything is up for grabs including discussing ways to help our sexual functioning. We learn and we learn to share. I agree with Yank66, ask around and make some phone calls. I suspect that eventually you will find a group. If not, the idea of starting your own group would be wonderful. Put an ad in the local paper and see what happens! Hang a few notices around town. What I've learned is that men with PCa are living all around us in our communities. We just need to reach out and the rewards are invaluable. Good luck.

[Darryl Partner]

did you know you can make a virtual support group through private messages? Just post a message for people to private message you that they want to join and then send all of them a single private message. voila. you now have a private support group apart from the messages that are seen by all 19,000 members.

[Mytripone]

Brother2Brother prostate cancer support group meets on the last Saturday of each month at 9:00 a.m. central.

[Bethpage]

In addition to PCa, my husband also has CLL. He attends a monthly support meeting via Zoom. When the meeting is set for a specific day time, only one reminder email/message needs to be sent. My understanding is that Zoom accounts are free to groups smaller than 100 participants. Meetings are limited to 40 minutes. enhanced functionality is available for a paid subscription plan.

[Miccoman]

I had a similar situation but eventually someone suggested I search for a Gilda's Club in my area. It is now called Cancer Support Community and WOW! I am so glad I started attending their men's prostate cancer support group. It led to a bunch of activities with people who aren't freaked out that I have terminal cancer.

Amazing support and information from men in various stages of PC. Yes, there is a lot of talk about incontinence and little about ED (when it does come up I suggest that the person check out the Gay Men's Prostate Cancer group here -- you don't have to join, I think, but search for ED and you'll see in depth discussions of various treatments and appliances).

Your local CSC group may be open to establishing a couple's group -- or even have one.

I cannot say enough good things about CSC Rochester, NY. They have made a huge difference in my life.

[gsun]

My Prostate Cancer Centre has a Sexual Health Clinic. They are great. They go over all the ways to keep our sex life alive. My wife is included in the discussions. They taught me how to use Trimix, but it didn't work for me. They went over meds, pumps, etc. We now have a sex life.