Did you have a Mentor?

When I was diagnosed three years ago, I learned from one of my sisters-in-law that her brother, who lives in a distant state, had been diagnosed and treated several years previously.

I established contact with him, and we emailed back and forth regularly, both before and after my surgery.  He was the one who advised me to enjoy sexual activity with great regularity, warning me that I would see big changes after the surgery.  We communicated about kegels and continence, about walking and resuming physical activity.  His advice was very helpful to me.

Since then, I've found myself in a position to have similar conversations with three or four guys as they got ready for treatment by radiation or surgery, and I've found these opportunities to be very rewarding.

Of course, we do much the same thing daily here on HW, but I wonder how many of us had an actual mentor, someone whom we knew and trusted, who helped us along the way.

I was thinking about this as I read 81GyGuy's current thread and Lupron Jim's comments within that thread.  What a blessing it was to have a "coach" and a confidant when dealing with the whole range of cancer issues.

Probably one of the most significant offshoots of HW has been GFMPH. We have developed into a cohesive group of prostate cancer warriors who have developed trust, bonds, and mentor relationships. We routinely call each other for chats, advice, or whatever it is we feel like talking about. Meeting face to face several times a year is an unbelievable experience. I would trust these guys on any subject matter.

We are an open group, and inviting all who want to become involved to come see us. Next get together is in Florida at Sonny3's in March. I have already started packing my swim suit for Sonny's new pool.

Mentors are where it is at. You can't do this thing alone.

Goodlife

HW has been my mentor.

Mel

I personally don't have a mentor, but I view everyone on the board as a team mentor. And I truly appreciate all of the wise information everybody have posted. Knowledge from first hand experience dealing with cancer is priceless.

Nick

Same here, HW group is my prostate cancer mentor. Reading back through my long intro thread here is amazing, considering the sheer number of responses helping me every step of the way.

I also don't personally know anyone else dealing with PCa. My dad and father-in-law had prostatectomies, but over 10 years ago. No one is nearby that could have given me any useful advice.

I have a personal mentor, a friend and trusted spiritual adviser, that has helped me tremendously. Not in any disease or treatment specifics, but rather in coping with a life-threatening disease and all that it implies.

HW has been absolutely vital for me. Thanks to everyone!

My number 1 mentor is my wife.....and the HW forum certainly helps a lot too. I really don't know anyone with PC except my sisters new boyfriend and he just wont talk about it....I tried getting some specifics from him but hes just blocked it out of his mind...I only know he was on Lupron and he quit it because he didn't like the SEs because my sister told me.

HW - . . . . . Unequivocally . . . .

I did.   I had two.   One I knew (but didn’t know he had PC) before I was diagnosed, and the other I didn’t. I was put in contact with both men through my close-knit circle of friends…perhaps interestingly, both connections were initiated through women friends of mine.   The first “mentor” was someone I formerly worked with when we were both at a Fortune 100 company.   He was Executive VP, and when he received his PC diagnosis he flew around the country in one of the corporate jets to NYC (to MSK, obviously), Baltimore (Johns Hopkins), Houston (MD Anderson) and San Francisco (UCSF) to consult with the world’s leaders in PC care.   He called me at home one evening within weeks of my diagnosis for a nearly 2-hour conversation which was extremely valuable due to it being laced with the best information available from the best sources on the planet.   It was a close friend of mine who I had told (about me) who was also close friends with him and knew about his case (I didn’t previously know he had PC), and she had given him my phone number.   The second “mentor” connection was made later, after I decided on surgery as my treatment choice, but before I decided where to have it done.   The urologist who made my initial diagnosis was in what would be called a “community practice,” and it wasn’t going to be him or anyone from his large practice doing my surgery (although he offered) at the local community hospital, although in their practice they could do either open or robotically-assisted RP.   I had called an attorney close friend who I knew dealt with many physicians in his practice of law; he was a malpractice trial lawyer and called upon the best doctors in Chicago to be expert witnesses.   Unfortunately he dealt mostly with orthopedic surgeons and couldn’t help with a urologist.   His wife called me the next day to say a former boss of hers had undergone surgery within the past 2-years, and asked if I’d like her to reach out to him on my behalf for a call.   Within a week, we had a 90 minute call about the considerations he had taken into account in his relatively similar case.   I think of these two guys—whom I cannot adequately “pay back” for the willing and helpful guidance they gave me—when I think about how I can “pay it forward” to the next guys through the PC door …

I answered briefly, pointing out that HW was and is my mentor. That is true.

However, I should single out Sonny. When I did my research, Dr. Mani Menon's name came up. At the same time, Sonny mentioned him. Sonny had recently had his surgery at Ford Hospital, done by Menon. We ended up chatting at length. We still chat, maybe once a year via this invention called a telephone.

Sonny -- thank you for your help and support!

Mel

Logoslidat, thank you for the compliment.
John is a good guy.

Galileo

HW by far is my go to place for information, only regret was I didn't discover until after surgery. I did talk to a friend of my older brother who was about four years post op. He wasn't a happy camper and after talking to him I was even more in doubt if I was making the correct choice in surgery for myself.

Just a quick comment/feedback for clocknut …another of your great, contemplative threads.   The responses offer insight into what we, as the core of a peer-to-peer support team, can do different/better going forward to help give comprehensive, evidence-based information to newcomers so that we can help reduce the “I wish I had…” or “I wish I hadn’t…” comments in the rear-view mirror of newcomers.   Thanks, again, clocknut.   Also a quick question for inkhorn (while hoping not to pull the entire thread off-topic)…Peyronies is commonly associated as an after-effect of PC treatment (and plenty of guys here reporting on this problem after treatment; none of whom knew about it in advance), but have you been told your epididymitis is actually a side effect (another one of the "harms") of PC treatment or was it independent?    tks     typo Post Edited (Casey59) : 11/7/2013 8:35:29 AM (GMT-7)