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Comment by Kathy Meade on May 7, 2008 at 11:57am

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The Sixth Annual Cancer Survivorship Series: Living With, Through and Beyond Cancer, Part II: Rediscovering Intimacy in Your Relationships Following Treatment
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Date: May 13, 2008 Time: 1:30 p.m. - 2:30 p.m. ET Presented By:
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BSN, RN, OCN, Cancer Survivor, Staff Nurse, Hematology/Oncology, Oncology Nursing Society Chemotherapy Trainer, Stanford University Medical Center
Sarah S. Auchincloss
MD, Associate Attending Psychiatrist, New York-Presbyterian Hospital, Weill Medical College of Cornell University, Consultant in Psychiatry, Memorial Sloan-Kettering Cancer Center
Sharon L. Bober
PhD, Director, Sexual Health Program, Perini Family Survivors' Center, Dana-Farber Cancer Institute/Harvard Medical School
Presented in partnership with:
• National Cancer Institute
• Lance Armstrong Foundation
• Intercultural Cancer Council
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This program is made possible by:
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Comment by Angela Jenkins on April 30, 2008 at 11:39pm

Welcome to the group. It appears finding Dr. Krongrad has been a lifesaver for many of us. We are all part of this unique community of families touched by PC. It has changed our lives forever and it's great to have this format for the wives to talk. Look forward to hearing more from you.

Comment by Shirley Bricker on April 30, 2008 at 11:23pm

I remember in '84 when we were told our son had hydrocephalus. I had no clue what it was, and they basically gave me a coloring book to read. Then they showed me a cabbage patch doll that had a shunt, and from that we were to know what to expect and they took our son in for surgery.

Alot has changed! When Dave was told he had PC, his doctor sent him to a urologist up in Indianapolis. The doctor told him he would go in and remove the prostate and both nerve bundles, and scheduled the surgery date for 6 weeks later. I came home thinking WHAT is going on??? I started reading as much as I could on the internet, and called the office the next day asking if we could schedule another appt. with the urologist because I had lots of questions. The receptionist asked me why I didn't ask them the day before. Let's see. I had just been told my husband has cancer, I was crying, and I really wasn't sure if I even knew what a prostate was for.

Anyway, she said she'd speak to the doctor and get back with me. I called the office and left messages 3 more times when I never heard back.

In the mean time I'd found out about the laproscopic surgery and Dave and I discussed it. We felt that was definately the 'better' choice. Now, who to have do it? I decided to look into who wrote the book on it. 3 guys. I looked them each up. One was still in France. Hmmm... getting Dave to leave the country? Not a chance. One was at Sloan-Kettering. I contacted the office and was told it would take at least 2 visits to NY. One for a consultation, and the 2nd for surgery. We were looking at at least 2 - 3 months. Then I contacted Dr. Krongrad. I actually emailed him... at night... and within 30 minutes we got a reply! He told us to call his office and give Hope our information. Yikes! This sounded good! From there it all came together. (Yes, the Urologist finally did get back to us from Indianapolis about a week before we left for Miami.)

Dr. Krongrad and his staff explained everything to us. It was so much better going into this surgery knowing what to expect, unlike our sons surgery in '84. (BTW our son is doing great. He's 23, single, and looking for the right gal....)

I'm thankful for the internet, and groups like this where we can share our experiences and learn from each other.

Comment by Angela Jenkins on April 17, 2008 at 12:03am

Looking back, in 1992 it would have been very helpful to have found a group, such as this network, where I could find the answers we so desperately needed. My parents were of the mindset that doctors know best so they followed his suggestions. My mother read everything she could get her hands on at the time. It would have been great to communicate with others and tell them my Dad's info and get feed back as to how they had proceeded with treatment. As it was, his was out of the prostate and surgery wasn't an option. He had radiation and hormone treatment. The radiation overshot the area and weakened his hip bone requiring surgery later. The hormones were so unpleasant for him. But we didn't know of other options. So I think the best thing we can do for others in this position is make ourselves, our experience and our knowledge available to others through this network. I am very interested in support groups on a local level as well.

Comment by Carole on April 16, 2008 at 10:54pm

That must have been a very tough time for you in 1992, Angela and again in 1997. But you have come through both. What would have been helpful to have in terms of support, both times - apart from information?.

Comment by Angela Jenkins on April 16, 2008 at 2:06pm

My father was diagnosed in 1992 with PC. At the time, information and internet searching was very limited -nothing like we have today. We were at the mercy of his doctor for advise.
My husband was diagnosed in Aug. 2007 with PC. Quite a different story - within hours we were able to find an unbelievable amount of information and all the contact info we needed to get in touch with Dr. Krongrad. We felt well informed to make educated decisions.
From either position, obtaining information and networking with others affected by PC is the most valuable resource. I would hope that one day brochures, with internet links for information, would be available in the all doctors offices for patients and families. This website would have definitely helped us tremendously last year, but even more so in 1992. This is the only website I've found that patients, family, doctors and professionals can interact regarding PC.

Comment by Leah on April 14, 2008 at 4:22pm

Dear Carole,

Welcome to the group. I admire the work you do. I write a blog, not an advice column, but I do get letters from people, women and men. Unfortunately, there are some desperate women out there and I can't do more than offer them comfort. We need specialized support for partners. As far as children, the only correspondence I've had is with the son of a friend who died of PC.

Comment by Carole on April 13, 2008 at 9:25pm

Hi Leah
I'm not a wife or partner, but run a prostate cancer website in Australia. We have a questions section - Ask Andy (it was modelled on the old Prostate cancer Infolink). We get a lot of questions from wives and partners, but also adult children of men with prostate cancer. They are often one step further back in the information loop, even than partners. Have you had any experience of this?