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June 28, 2011

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June 28, 2011

I was lucky enough to be told about Malecare when I was first diagnosed almost six years ago. The men who attend the weekly support group in NYC are well informed, share their experience, strengths and hope and actively participate in dealing with P.C. The website has a wealth of invaluable information. Everything from choices of treatment (including active surveillance) to where to get biopsy second opinions as well as nutritional information. malecare.org provides the most up to date information and in my opinion is a must for anyone dealing with P.C.

The Great!

I've personally experienced the results of this organization in...

As someone who has made a choice to do Active Surveillance, the support group member's shared information has helped me to make educated and informed choices.

Ways to make it better...

If I had to make changes to this organization, I would...

This organization is the best of it's kind.

June 28, 2011

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June 28, 2011

By talking directly and getting answers with fellow prostate cancer patients/survivors can bring a level of calmness to everybody who is newly diagnosed. Then by constantly interacting with members, vigilance is reinforced and help avoid pitfalls for whatever procedure one chooses to be treated with. It is indeed very important for everybody's well-being to be aware of what's going on in our body that could have been affected from some medicines/hormones we took as part of a treatment. While we knew that there is no magic bullet yet to fight any form of cancer, we need to be careful of what we take, as it may be the cause for the sudden demise of anybody who wasn't aware of side-effects. In that case, one might be able to claim as having won the fight against cancer by dying from something else !

The Great!

I've personally experienced the results of this organization in...

The members feedback help me determined what procedure should I consider based on accumulated info that have been provided for my case.

Ways to make it better...

If I had to make changes to this organization, I would...

This organization has the resource to provide cancer researchers wide array data that could help them in their research as each member have unique experiences that can be shared with them.

June 28, 2011

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June 28, 2011

As a 39 year old man diagnosed with Prostate Cancer, MALECARE was the only non-profit I came across that dealt in depth with the types of problems and concerns young men deal with when confronting this disease. The group coordinators and MALECARE staff have been nothing but a trustworthy source of the most up-to-date information regarding treatment options, treatment outcomes, even sharing with great confidence physician and surgeon referrals. Staff and fellow participants were available to answer almost all my questions regarding the very real considerations of continence and impotence after surgery. It's been 9 years for me since surgery and I am happily cancer free. I never take for granted the medical and emotional support MALECARE gave me and know they will give the best support they can.

The Great!

I've personally experienced the results of this organization in...

that I was able to deal honestly and directly with my concerns about continence and impotence as an out gay man.

Ways to make it better...

If I had to make changes to this organization, I would...

make sure they get the best support they can.

June 28, 2011

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June 28, 2011

Finding Malecare has made a world of difference in my approach to dealing with my prostate cancer. A group of well informed, passionate supporters, eager to share their knowledge and experience. My decision to go on Active Surveillance was a direct result of the information, guidance and support of this group. I wish everyone diagnosed with prostate cancer would have the opportunity to interact with Malecare.

The Great!

I've personally experienced the results of this organization in...

participating in weekly meetings

Ways to make it better...

If I had to make changes to this organization, I would...

help it raise more money

June 28, 2011

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June 28, 2011

My brother-in-law has metastatic prostate cancer. I just lost my brother to Non-Hodgkins Lymphoma and received extensive support from online sites. I found this site and have received moral support as well as much detailed information about cutting edge treatments, clinical trials, real life experiences with drugs and other treatments. Chuck Mack seems to be devoting his life to helping us all cope with this disease. While still on androgen deprivation therapy, I am already researching the next step and the malecare forum is invaluable. This site welcomes gay men and straight men. All are the same in this fight.

The Great!

I've personally experienced the results of this organization in...

Gaining knowledge about real life side effects of current and potential treatments and also being kept abreast of latest developments in the treatment of advanced prostate cancer.

Ways to make it better...

If I had to make changes to this organization, I would...

Change the listserve to a more useful forum where it would be easier to follow threads and to research old entries.

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

search engine

What, if any, change in your life has this group encouraged?

work in progress

When was your last experience with this nonprofit?

2011

June 28, 2011

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June 28, 2011

As a gay male who was diagnosed with PCa at age 61, it was a double whammy to find this out. I had retired recently and was looking forward to taking time to enjoy life with my partner. PCa changed so many things in my life all at once. I was reeling from the implications to my sexual life, my social life, along with the real scare of hearing I had cancer. What to do? I went online and looked for support. And Malecare's Prostate Cancer and Gay Men group was found on my first search.

The Great!

I've personally experienced the results of this organization in...

I learned to deal with the side effects, received valuable tips on how to improve after surgery, and received emotional support during the rocky times that followed surgery.

Ways to make it better...

If I had to make changes to this organization, I would...

I would make sure they had additional resources so that they could do even more for men with Prostate Cancer.

June 28, 2011

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June 28, 2011

As a 6 yr prostate cancer survivor I have visited many PCa charitable websites and the quality and depth of content that Malecare offers is unparalleled. In addition they offer men with special needs like advanced cancer or gay a forum to share their experiences. In addition to their online presence they do a great job with promoting awareness and advocacy and offer valuable local support groups.

The Great!

I've personally experienced the results of this organization in...

I have used their websites, forums and attended a local support group meeting. Quality of info is tops.

Ways to make it better...

If I had to make changes to this organization, I would...

Continue to raise awareness of Malecare resources.

June 27, 2011

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June 27, 2011

My husband was diagnosed with advanced prostate cancer in 2005. During the past six years, we visited the Malecare site nearly every day to stay abreast of the latest drugs and innovative treatments. The site is an exceptional resource and is always on the cutting edge of what may prove to be the best treatment for men with this diagnosis. The information provided on this site, allowed us to be more knowledgeable when we met with our oncologists. We were able to suggest treatments and participate in experimental drug trials because we had read about and were aware of them. Malecare stays focused on what is happening on the political side of funding for prostate cancer research, particularly the Department of Defense funding for prostate cancer research. They do an invaluable service for all who battle this deadly disease.

The Great!

I've personally experienced the results of this organization in...

providing better health care for my husband as he battled advanced prostate cancer.

Ways to make it better...

If I had to make changes to this organization, I would...

advertise more.

June 27, 2011

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June 27, 2011

I found the "prostatecancerandgaymen" site after having robotic surgery for prostate cancer in February. It has really been a help in helping me understand my recovery and benefitting from the experience of others who have gone through this. I don't know how many men use the site, but every question seems to get several helpful answers either from men who have gone through the same thing or a citation to a good source. In my case dealing with a delayed return of continence made me feel quite depressed and alone, and knowing that others have been through this and recovered has given me more hope and relieved my depression a bit. I also know that if more problems arise I can always ask more questions. Can't tell you how much this means to me!

The Great!

I've personally experienced the results of this organization in...

my life

Ways to make it better...

If I had to make changes to this organization, I would...

don't know

June 27, 2011

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June 27, 2011

I am a prostrate survivor of one year now. I have found some great sites to visit. I was recomended to this site by a friend who is a prostrate survivor. I believe all men should be tested with a psa and also a digital exam to keep and stay helathy. With sites like this all men can empower themselves with their health and read what others have gone thru and how they are surviving now.

The Great!

I've personally experienced the results of this organization in...

This is my first time here and I havce found it useful reading about other mens stories of survival

Ways to make it better...

If I had to make changes to this organization, I would...

I would leave it alone for now since this is my first time here.

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