I have been a member of Malecare just a couple of short months, and I already just feel better having a community of similar men to both talk with and share stories. I am single so this group has been helpful in not feeling so alone in this journey. I appreciate that this sight and organization offers a judgement free opportunity to be a part of. It has helped me mentally and stay prepared for the future.
I have visited Malecare - Advanced Prostate Cancer site almost every day for years. This is where I became aware of the details of my cancer. It is here that I found there is hope. The many minds and opinions are precious. What others have done, are doing or plan to do is a road map. The latest prostate cancer news is here. The results of trials are here. At times there are lively discussions. Malecare is my only support group. I follow the triumphs, the struggles and sometimes the tragedy of those engaged in the same battles that I wage. I don't even remember how I discovered Malecare. A lucky google no doubt, when I was desperately looking for answers. The first place I go to in the morning is Malecare. Enough said.
I am eternally grateful for Malecare. I wish I would have found this site sooner. When my father was diagnosed with Prostate Cancer I found MaleCare. The site has been an invaluable resource. I can't express enough how grateful I am for this site and the support we receive from the site.
When I found this site it was as if a bright light switched on in a very dark gloomy room. It gave me hope and put me in touch with very intelligent prostate cancer experts. Reading daily posts is equivalent to a gathering with my friends to discuss topical and new issues which affect my malady. Thank Goodness for this site... jv
I have searched widely and have not found any better source of information for treating prostate cancer for the non-professional than the web sites affiliated with Malecare, Inc. ("https://healthunlocked.com/advanced-prostate-cancer/" and "https://healthunlocked.com/prostate-cancer-community"). The stature of those sites has attracted a number of active and retired medical professionals and other experts on all aspects of prostate cancer treatment. I have found helpful information on all aspects: Which tests to have, how to interpret the results, treatment options and trade-offs, and how to deal with the psychological issues, and the individual experiences of the other members.
I think many who use the Malecare sites take for granted that such an excellent resource would be available, but we shouldn't. For example, when I was searching for information on testicular cancer, I searched for a resource of similar utility, but did not find one. (Providing a similar resource for testicular cancer appears to be an area in which there could be another opportunity within the Malecare structure, which seems to fall within Malecare's self-description as "america's leading men's cancer survivor support and advocacy national nonprofit organization".)
Being in remission following treatment for prostate cancer and currently hoping for the best while trying to be prepared in case of recurrence, the information I get from Malecare is invaluable; thus the contributions that I make is money very well spent.
If you have risk of prostate cancer, are undergoing treatment, or know someone else who does, I urge you to make use of the resources available from Malecare, and to also make a contribution to Malecare.
This organization is a wonderful resource for men dealing with prostate cancer
I have learned so much about the various treatment options
Its wonderful to have such a supportive group of men
When I was diagnosed with Gleason 9 locally advanced prostate cancer (and I also had the comorbidity of a kidney transplant), I was very fearful. I read books and scientific papers, I talked to my urologist, oncologist and the specialist nurse, 10 minutes here, 10 minutes there. Mainly I educated myself and gained support through the posts on Malecare. When you talk to your medical staff to discuss treatments, I recommend that you try and educate yourself first so that you can ask more pertinent questions when you discuss the options for treatment. There are many very knowledgeable people posting on Malecare, some of them doctors or biologists, many of them long term survivors.
Over five years ago I was in bad shape with an aggressive stage#4 prostate cancer shutting down my urology and inducing kidney failure . For two years I was in a terrible state of fear and depression. Didn’t know who to talk to ? Then , I found our cite. Instantly , I felt camaraderie with the compassionate folks standing in similar shoes. This emotional hormonally driven cancer is not easily understood unless you live with it . Even then, it contains several
Mysteries . ? Health unlocked has helped me greatly .. Maybe even kept me from seeing a shrink.. So many helpful and knowledgeable people that care . These are my APC brothers and families. All striving to survive with a diminishing disease .. Thank you Scott
This is the preeminent site for those of us with advanced, stage IV metastatic prostate cancer. It has brought my knowledge and understanding of this incurable disease to a level close to that of those oncologists I visit and what I have learned here has shaped much of my treatment plan.
Their ListServe is awesome. It is a fantastic source of information and highly supportive to us victims of metastatic prostate cancer. If you or your family member have PCa, this is the place to go. I read it daily.
I have been a member of Malecare/prostate cancer for 4 years. I wish I had found it sooner. It is a great source of information and inspiration for the newly diagnosed or those who are old hands at treatments for prostate cancer. You and find information on news drugs and treatments and the effects of drugs and treatment. At a time when you have to make a decision on treatment you can find others who can give you guidance.
A good source of information and help for men with prostate cancer.
I suffer with terrible health anxiety and this site supports me constantly when I’m feeling at my lowest the support I receive from male support even though I’m a female is overwhelming and supportive
I cannot thank you enough for your support and your help
Healthunlocked was the only online forum that really helped me when my father was diagnosed with recurrent advanced prostate cancer. I’m from Scandinavia and found that people from all over the would sought this forum for a good reason. The help in finding valuable information and emotional support is unique, I’m forever thankful.
The materials Malecare provided me saved my life. I didn’t know what questions to ask or what the possibilities of side effects were. The Malecare group I attended and the info packet I received provided more information than my urologist and internist combined.
I am 23 born a male always wanted to be a female and it kills me that i have male bodyparts .i feel very incomplete and wierd if someone can help me it will really change my life
Malecare is careful and open in its dissemination of information, supportive in its help of men with prostate cancer at early stages and in advanced disease, and a font of information and encouragement to families, caregivers, professionals and clinicians and clinical researchers worldwide. Its support of clinical trials and all kinds of research ideas through the brilliantly conceived StartACure links crowd sourced funding with real projects that can both support researchers and teach the general reader how to appreciate and understand how research works. And Malecare's attention to the needs of ALL men -- gay and straight, old and young, with illness and worried well, of all ethnic and racial backgrounds, in NY and across the world -- is true to its name. Thanks to founder Darryl Mitteldorf, LCSW, to Joel, to the board and volunteers for providing a real service.
I was diagnosed with advanced prostate cancer and could not find any help or support from anyone or from another place. Malecare Is a fantastic programm for men like me. They provide meaningful education and support for men with metastatic prostate cancer . They are the only ones I know that do this
They are accurate not clogged with advertisements and speak to my situation. No other organization seems to care the way they do. I wish I had a million dollars tog give them, it would be worth it.
Malecare is a Non-profit organization that brings men from all walks of life together who have or have had prostate cancer. It offers support to individuals who previously would have felt or been isolated. Under the leadership of Daryl Mittendorf the group focuses on all issues regarding the disease and brings to the vanguard health awareness. Darryl shares his time and expertise at no cost and contributes much to the well being of its participants.
While increasing, prostate cancer awareness and advocacy is not representative of is impact on society. In addition to is support network for those diagnosed with prostate cancer, Malecare does an excellent job in increasing public awareness. An example is their ongoing work in organizing support for and encouraging citizens to contact their government officials to ensure continued government research funding for prostate cancer. I am proud to support this organization.
Though Malecare seems more focused on prostate and testicular cancer, their social worker was able to help me connect with other men diagnosed with lung cancer. Malecare also showed me how to use the internet to get quality kinds of information.
It's hard for men to meet other men diagnosed with cancer. Malecare provides safe and informative group meetings that guys thrive in. It's a great nonprofit and helps thousands of men all across America
Malecare is one of America's great cancer survivor nonprofits, bare none. As a member of the Board of Directors, I have seen it grow to provide services to male cancer survivors, where other nonprofits simply dropped the ball. I am honored to be a part of Malecare's leadership and endorse it's standing on the Great Nonprofits list.
Malecarupport is a support organization that guides one from that deafening silence at the moment of diagnosis through the meandering matrix of options and confusion to a point of reasoned and informed decision making. This alone is priceless.
I was all alone with this diagnosis of prostate cancer and found Malecare which held me and gave me courage and the latest knowledge. I could not survived without this support group and I still come to meetings to encourage others to attend.
Malecare has been a most positive experience for me after being diagnosed ten years ago with prostate cancer. My choice of treatment is based on what I learned and discovered through this support group.
I am indebted to Daryl and the folks at Malecare because years ago when I received my diagnosis of prostate cancer, I desperately sought help and information and they were there for me (and anyone else). I was upset and confused with loads of questions. Malecare provided support and a wealth of useful information in the form of websites, writings, personal information, etc. that I could not find any where else.
In the 18 months since my prostate cancer was diagnosed, Malecare has been hugely helpful to me. Its weekly discussions are a vast source of specific information and ideas, as well as a font of psychological guidance and support. Darryl does a splendid job of steering the ship between these two goals. And thanks to his wisdom and diplomacy, the experience has made me feel much less alone. A prostate cancer diagnosis is terrifying and confusing. But the Malecare meetings have made it much easier to take. I recommend Malecare, and Darryl, whole-heartedly.
I found myself diagnosed with prostate cancer in 2006. After searching for prostate cancer organizations to volunteer with, I found Malecare. Unlike all of the other national prostate cancer so called non profits, Malecare seems to honestly care about providing quality resources, rather than spending insane amounts of time on fund raising. Three cheers to Malecare and it's great advocacy work.
After I was diagnosed with prostate cancer, I found Malecare via Google. Their weekly support group was of great value not only as an information exchange, but of great psychological help in getting through the whole diagnosis/decision/treatment/recovery process.
Twelve years ago, I was diagnosed with PCa. With the help of the internet, I was lucky enough to run across Darryl and fellow prostate cancer survivors who were able to steer me in the direction of good health care and emotional support. The info I receive via Malecare and Darryl is extremely helpful. Kudos and thank you to Darryl and all the people who continue the quest for a cure.
I am indebted to Daryl and the folks at Malecare because, over a year ago when I received my diagnosis of prostate cancer, they were there for me. I was upset and confused and swimming in questions. Malecare provided a wealth of useful information in the form of websites and writings on various topics concerned with prostate cancer. Moreover, I was able to attend a couple sessions of the support group that meets in Manhattan and hear the stories of others who were where I was. The counsel I received at the support group gave me the information I needed to make the right decision for me. I underwent a radical prostatectomy at Memorial Sloan Kettering Cancer Center and, although my cancer was more serious than suspected, I came through the operation fine and have had no recurrance. My PSA continues to be zero. Malecare helped A LOT. I continue to be on their mailing list and know they are there to help in the future should I need it. Thanks Malecare.
I have a friend who was diagnosed with Prostate Cancer and who attended Malecare support group. The Malecare support group seemed to help him ALOT. HE seemed so much more relaxed and confident about his treatment choices after attending the group.
In early 2006, my son, Jeremy, was diagnosed with advanced metastatic prostate cancer. He had never had any symptoms, had no family history and he led an extremely healthy and balanced life. He was 34 at the time and because of his emotional and physical fitness and determination, he fought this heinous disease for 18 months before succumbing, at 36 in November, 2007. Jeremy's disease was too advanced for him to have "options," (surgery vs. watch and wait vs radiation), so he was treated with methods to prolong, rather than save, his life. However, as his parents, we never stopped looking for miracles and support. We wanted information about incidence in younger men and clinical trials that offered hope. We reached out to every known institution and group that we could. No one responded until ZERO-The Project to end Prostate Cancer reached back and this was after my son's death. I am now a board member of that organization and it is through ZERO that I became acquainted with Darryl Mittledorf o Malecare and have learned about the kind of support they to all men concerning their prostate health. Their web site is a great source of information concerning options, explanations about diagnoses, local support and guidance. They work tirelessly to bring awareness to the public about mens' issues and diseases. They are the only source of support that I know of specifically for gay men which I find impressive and also very necessary. Their passion and compassion combine to make them a top notch organization. They have not slowed in their commitment to lighting the White House Blue during September, "Prostate Cancer Month." I wish I had know about Malecare when my son was ill. Although he was not gay, I know that I could have gotten information and the emotional support that I needed. Now that I am part of the prostate cancer community and an organization that is focused on increasing funding for prostate cancer research, I know the value of Malecare and would hope that they will become more visible to the general population at large.
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.
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 !
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.
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.
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.
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.
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.
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.
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!
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.
I am a prostate cancer survivor (17 years) and recently encountered the malecare website. These people appear to be doing a good job, and provide resources that I wish had been available to me at an early stage.
MaleCare is a fantastic group that was very welcoming to me on my first day. i have a PSA of 38 and a Gleason score of 3+4=7. Everyone in the group has a different story and a personal approach to their situation. This group is empowering its members to get the best information from each other and be proactive in gaining information from doctors. It is a medium large group, about 25 people, the perfect size. i will be going back.
When I was diagnosed with prostate cancer, I was lucky enough to have learned about Malecare and it was and remains the best prostate cancer group one can have. The men in the group are the most informed of anyone - including doctors - since they have the disease and it's their lives that are at stake so they are constantly searching the Internet and learning the latest treatments, efficacy of those treatments and, most importantly, they are totally giving of this information to newly diagnosed men with prostate cancer. I can not recommend this group enough. In addition, they are extraordinary in their support for fellow members and deal with each man individually. There is no cant or rigidity in their help. They assess what you tell them about your illness, including active surveillance and/or treatment - surgery or radiation. They respect both your physical needs and your emotional points of view. Bravo to them!
I also can not give enough praise to Darryl Mittledorf, who started the group and remains the best possible source of new information. This man deserves a medal...
SO, do NOT waste any time... GET CONNECTED to the best prostate group in America....By far!
As a gay man with prostate cancer two years ago, it was great to discover the "prostatecancerandgaymen" group sponsored by Malecare. The men in that group are willing to answer questions to the best of their ability about how the cancer and treatment(s) might affect the lives of gay men. They are much more open than the (mostly) straight sites I found.
In 10/2009 I was diagnoised with prostaate cancer and like most everyone else I was terrified, I immediately began my journey trying to find the right doctors for me in my areas. I really did not feel comfortable with any. I started researching the internet looking for a place where people like myself were sharing any information abour my newly diagnoised illness. And then one day after many searches I came upon Malecare and was thrilled to see the posts of people like myself, I immediately began to ask questions and almost immediately got answers. I was told about Prostate Oncolgy Specialists dealing only with prostate cancer in a city about 2 hours away. And thus thanks to Malecar I found the doctors who would be on my Team through this journey. I also found through Malecare about seminars and conferences in Southern California. I went to a PCRI Conference where I met some of the best of the best doctors and professionals in the field of Prostate Cancer. Today because of Richard Lam, Mark Scholtz at Prostae Oncology Specialists and Fred Millard in La Jolla, all of whom I learned abour on Malecare, I am getting the best treatment, feeling great and enjoying life. I am now linked to Malecare so I get to follow it everyday constantly learning and at times providing my own imput. So very grateful Malecare will be here to help others like myself find the guidance they will need for their journey in dealing with Prostate Cancer.
When I was diagnosed with prostate cancer in 2005, a little surfing on the internet brought me to the Malecare site. There I found a wealth of information about all aspects of prostate cancer that was an enormous help in making decisions about treatment. The site also led me to a support group that was very valuable for finding out men's actual experience with treatment. I still attend. I am very grateful that Malecare was there when I needed help and is still a resource when I have questions.
After I was diagnosed with prostate cancer, I didn't know which end was up. Surgeon said surgery, radiologist said radiation and both said, start treatment asap. Fortunately, my urologists nurse suggested that I consider going to a support group. I found Malecare and learned that my one core G 6 (3 plus 3) biopsy at age 68 was no cause for alarm. And, thank goodness that Malecare has such a great website. In fact, I think I learned more about how to understand prostate cancer from the Malecare group guys, than from my urologist. Hours spent with guys who are also diagnosed versus 45 minutes with my urologist. I am grateful that Malecare exists.
Diagnosed with aggressive advanced prostate cancer at age 62, advancedprostatecancer.net, sponsored by Malecare, has been an invaluable lifeline not only in learning to live with advanced cancer, but, more important, in being connected with men--and in many cases, their significant others--in the same straits as I. I live in an area devoid of PCa support groups, so this online group has been my all-important link to know I am not alone.
Not only is the collective wisdom of men farther down the cancer journey gladly shared, but friendships develop, even though we have never met each other face to face. Malecare is right there in the trenches. There is no baloney, just frank and honest help.
When I was first diagnosed with advanced prostate cancer I was lost as I looked for support and help from different organizations. Malecare's different support group system (weekly without lectures) answered my need to find support and then challenged me to become involved and work to expand its services to other men and their loved ones. It is an amazing organization for any man fighting cancer. As the logo says: Men Fighting Cancer, Together.
To clarify, I am both a volunteer and a client served. Malecare is the only national organization that serves both straight, gay and transgender men diagnosed with cancer. It is also the only organization that has developed support programs for men with advanced and recurrent prostate cancer. When I was first diagnosed with recurrent prostate cancer I searched from one organization to another, went from one support group to another and was unable to find any program that attempted to meet my personal needs. This was despite the fact that I lived in New York City! Malecare's weekly support group was the only group I attended that reached out to me and helped me deal with my individual situation. The men who participated and the group leader provided much needed support in a time of my life that was most difficult. The leadership of Malecare (all of whom are volunteers) was flexible enough and interested in my general concerns about the lack of support programs for men with advanced disease. With the organizations support and encouragement, I was able to join with Malecare and start additional, nationally based programs designed specifically for men diagnosed with advanced disease and their families. Malecare is a true grassroots organization that is vital to our society and meeting needs of the under-served population.
I find this useful before and after surgery for Prostate Cancer. both support from posters on the Yahoo group and information/education.
I've been a cancer survivor now for almost 8 years. The email group has been a great source of information and support during my journey.
Prostatecancerandgaymen is an active, helpful group, well monitored. Its specific focus is as needed as it is rare. The sharing is generous and hopeful.
I have friends with PC and I frequent this site as it is the most informative, yet, informal in their approach. Without malecare many men would be without knowledge they need and deserve!
I interact only via the Yahoo group prostatecancerandgaymen, and have found it very helpful. I have also attended an ACS support group Man to Man in my home town, and the Yahoo group is much better. It is there all the time, not only on meeting nights, and when I've asked questions, I got a number of answers from men who have had problems or issues similar to mine. I appreciate the honesty and willingness to help that other members have demonstrated.
I'm a prostate cancer victim, hopefully cured, but awaiting results. Too soon to tell. I was confused by what the doctors said, insulted by their ignorance of the "quality of life" issues beyond the cancer itself as they apply to gay men. I searched other prostate support groups and found disappointment. I found group on Yahoo "prostatecancerandgaymen" which Malecare sponsors; it answered questions, there were men there who were not ashamed to talk about real problems, both emotional and physical. They were comfortable in talking openly about details which "polite society" would not on other resources. They directed me to other resources. Their book "Gay Man's Guide to Prostate Cancer" gave me hope and an understanding that I wasn't alone in my feelings.
Malecare's monthly support group meetings in Manhattan really are supportive. If the Yahoo! group weren't irrationally selective in admitting members, perhaps I'd have sought the same sort of guidance online. In retrospect, I think I benefitted more from the direct personal interaction around a table.