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Prostate Cancer International

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Nonprofit Overview

Causes: Cancer

Mission: Prostate Cancer International will transform global understanding of the risks associated with prostate cancer and the strategies to manage those risks until prevention is possible and a cure can be found.

Target demographics: Men who are concerned about their risk for or who are diagnosed with prostate cancer, and their familes

Direct beneficiaries per year: Between 1500 and 3000 people every single day of the year through our online initiatives

Geographic areas served: America and across the globe

Programs: The "New" Prostate Cancer InfoLink (a prostate cancer news service) and its associated social network (a prostate cancer-specific discussion form with > 6,000 members), along with other communication and advocacy initiatives.

Community Stories

174 Stories from Volunteers, Donors & Supporters

2

Client Served

Rating: 5

I am a 59 year old man who was diagnosed with prostate cancer in 1999. Although I had surgery, followed by radiation therapy, followed by androgen-blocking therapy, the disease continued to progress and has metastasized to one area of my spine. The disease progression has been significantly retarded, I believe, by my participation in several clinical trials over the past several years, at Johns Hopkins and elsewhere. "The 'New' Prostate Cancer Infolink" is the best source of information I have found in my considerable research about cutting-edge prostate cancer issues, and especially about new drugs and clinical trials. It is of great importance to patients like me to have such a resource available. For example, the daily posts or blog that I receive from the sitemaster by email have helped me--and my physician--decide upon the appropriate sequencing of the several clinical trials for which I have been eligible. The issue of optimal sequencing is highly uncertain but is important, because choosing to participate in certain clinical trials early on can disqualify a patient from participating from other, potentially beneficial trials later on. I particularly like the site's daily blog because it is written in language that a layperson (like me, an antitrust lawyer) can readily understand, but the information is not simplistic or "dumbed down," and the blog provide links to articles and resources that are useful even to my oncologist. (My oncologist runs clinical trials himself, but he can't get to every conference that the Infolink sitemaster reports on.) In other words, the presentation of the information achieves an excellent balance of technical detail and accessibility. I am grateful for the efforts of those involved and for the clear, direct prose style of the blog.

1

General Member of the Public

Rating: 5

I am the spouse of a prostate cancer survivor. During the early days of the disease I used this sight to gain information from other cancer victims. After the surgery (non-nerve sparing) I read about how people coped. During radiation and hormone therapy we did the same. This site was a saving grace. It made me feel less alone. There is almost more information than a person can read, but that is a good aspect.

1

General Member of the Public

Rating: 5

New Prostate Cancer Infolink NPCI is an operational service of PCI. I needed to find out as much as possible about prostate cancer when my father was diagnosed with terminal prostate cancer. He succumbed to prostate cancer two years ago. Since I first started following it, NPCI has been an excellent an frequently updated source of information about appropriate prostate cancer treatment and new developments in treatment. Obviously I'm biased, but NPCI is probably the most readily accessible source of patient appropriate information about the PSA screening test for prostate cancer. In addition to timely news commentary, notification of published research and new clinical trials, NPCI also provides sophisticated, on point, response to questions and comments on new postings. NPCI is an awesome resource for those interested in prostate cancer treatment.

1

General Member of the Public

Rating: 5

Diagnosed and RP in May 2007. The info link has beeb a beam of hope without having to become involved in support group or otherwise. I read it almost every night. Very informative without agenda of promotion.

Previous Stories
1

General Member of the Public

Rating: 5

I was diagnosed with prostate cancer in 2007, radical prostatectomy in May 2007, with chemical recurrance in May 2009. The aprostate Cancer Intl. site has provided invaluable information on many aspects of this journey, and I read it on a daily basis. It has been a better source of useful information than resources that I have investigated and/or purchased. I have shared information with my treating Urologisrt/surgeon that he was unaware of. This site provides excellent information and support to those of us that have this disease.

1

Client Served

Rating: 5

I was first diagnosed with prostate cancer five years ago but only became aware of the PCI website in the last year. It is excellent and the best website I have found. In the U.S the only other website I have used is Malecare, whcih is good but is v ery US centric, while PCI has a good internatioal side to it. I have found nothing of value outside of these two websites. I wish it every success.

1

General Member of the Public

Rating: 1

This November will be the 5th anniversary of my high grade prostate cancer diagnosis. After much research and consults with conventional and alternative doctors, I made the decision to go the alternative route and with God's help, my two alternative doctors, my conventional urologist and personal changes on diet, exercise and mind monitoring I am better now than prior to the diagnosis. It is very sad and discomforting that you maintain a site that just promotes the VERY process that most honest doctors are acknowledging that it is very far from providing a cure for this type; actually any type of cancer.

1

General Member of the Public

Rating: 5

When my husband was diagnosed with prostate cancer this year. Without "New" Prostate Cancer InfoLink, the amazing moderators, contributors, medical specialists and treatment links it provides, I think we would have emotionally drowned. We got a response to my first post within a couple of hours-unheard of on most internet medical info sites. The support and information we got allowed us to calm down, investigate our options, make a decision and be hopeful. This cancer will be an ongoing battle but at least I have a reliable source to turn to when we need fresh troops.

1

General Member of the Public

Rating: 5

This is a great site and helpful for patients and family to discuss shared issues. It also promotes advocacy and awareness and is well run.

1

General Member of the Public

Rating: 5

Was able to obtain valuable information about my health issues with my prostate and gained vital insight about the disease of cancer of the prostate. Very comforting to have people who have experienced similar symptoms/results and finding out what they did specifically to fight this horrible disease.

1

Client Served

Rating: 5

I found the advice given to me on this web sight invaluable. It answered all my questions and helped me come to terms with the advice given and that was to have radical surgery. I have since had the operation (two months ago) and have recovered very well. I followed all advice given especially in choosing a doctor who is very experienced with this kind of surgery. I have my first PSA blood test done next week and am fully confident that all the cancer has been removed. Best Wishes. Ray Stubbings.

1

Client Served

Rating: 5

Most important was their immediate response to any question that I had. They are extremely knowledgable, professional and caring.

2

Professional with expertise in this field

Rating: 5

I have used/read this site for over 3 years. This is the best overall site on the web for prostate cancer. The discussion and opinion of the moderator is very valuable. I take the information on this site and share it in prostate cancer support group, so the impact of this site has a large multiplier effect in that a lot more patients are benefiting from the site than just the visitors.

2 Alan13

General Member of the Public

Rating: 4

People can get very good information about prostate cancer. They are very very helpful.

2

Client Served

Rating: 5

Provides great information! Up to date science and research which would be unavailable elsewhere.

2 Richard33

Client Served

Rating: 5

This is a wonderful website. It got me through understanding how to deal with my cancer much more effectively than anything else I could find on the web.

1

General Member of the Public

Rating: 5

A superb site. About the best there is related to prostate cancer.

1

Client Served

Rating: 5

I am a wife of a prostate cancer survivor. This site has helped me greatly in the sharing of other people going through the same or similar experiences.

1

Client Served

Rating: 5

Excellent advice, recommendations, encouragement and support from this wonderful organization.

1

Client Served

Rating: 5

Excellent site to learn and discuss Prostate Cancer treatments and issues

2

Client Served

Rating: 5

This is a wonderful organization that has helped me plan my treatment for prostate cancer.The information posted on their web site is very valuable and helps one to keep up to date with current treatmnet choices

1

Client Served

Rating: 5

Members and staff gave great advice. I felt comfortable discussing my personal issue on this site.

1

General Member of the Public

Rating: 4

Excellent source of prostate cancer daily news with a lively, well-informed comment blog. Plenty technical with links to source documents - very well moderated.

1

General Member of the Public

Rating: 5

Great information. Best I have seen on Prostate Cancer.

1

Client Served

Rating: 5

This social network serves as a source of information, support and plain, good old-fashioned kindness through my father's five-year struggle and death from prostate cancer. The people from this group became my friends, a community in the real sense of the word. I never felt pressured to do or buy or contribute to anything, and received in return, kind words and warmth that I could not have done without. Kudos to the organizers, and may they win every award in the book. Thank you, and please do not hesitate to contact me for further information and commendation. Dr. Mitu Sengupta, Associate Professor, Department of Politics, Ryerson University, Toronto, Canada (416-979-5000 ext 4184).

1

General Member of the Public

Rating: 4

I've had two negative biopsies in a row because of PSA out of range, and this page has been so helpful finding information regarding CP and its treatment alternatives, at the same time sharing my issues with other people it`s kind of comforting.

1

General Member of the Public

Rating: 5

When you have been diagnosed of Prostate Cancer you want to seek all the information you can. You go to Institutions like Prostate Cancer International, who were so willing to help me to show me the way, to calm me down, and let me know I was not alone. This was very comforting, healing, really a wonderful feeling to have this group give me the support I was looking for. I appreciate so much having this organization provide the support when we are in dire need. God Bless this organization. Carlos J.Mills

2

Client Served

Rating: 5

two years ago i was diagnosed with prostrate cancer which had progressed into some bone spots. I found Mike Scott very encouraging and informative , his advice helped me thru a worrying time as i had no clue regarding prostrate cancer.

1

Client Served

Rating: 1

I wish to unsubscribe to the Prostate Cancer International. It is not helpful enough to continue subscribing. However, there is no place that I can find on any page to unsubscribe. Please unsubscribe my email address. Thank you. cscmb@comcast.net

Comments ( 1 )

profile

mike 07/30/2012

We have made several attempts to contact this individual and assist him/her in unsubscribing from the services we provide. HOWEVER, we wish to be clear that we are unable to find any evidence that the individual is, in fact, subscibed to our services either directly or through either Twitter or Facebook. In addition, as yet, he or she has not responded to e-mail requests for more information. We would be pleased to try to resolve this problem if we could, but ...

2

General Member of the Public

Rating: 4

I receive many newsletters electronically and your "new prostate cancer infolink" is among the first that I open. I like especially how you qualify the news items to preclude misunderstanding while keeping your presentation clear and accessible. If you want an example, I attended one of the Pivot trial presentations. Your reporting is the best I've read. Please keep up the great work. My only problem with the infolink is to correctly read and type the blocked-in e-mail informationt at the end of an article.

1

General Member of the Public

Rating: 5

great to share ideas, experiences with others facing similar circumstances.

3

Client Served

Rating: 5

This is a wonderful web site for helping prostate survivors and newly diagnosed learn about new treatments and how to advocate for health services and research.We all need to keep up to date on what is new and this web site helps us to do so

3

General Member of the Public

Rating: 5

This web site has been an excellent resource for various information, including treatment options, related to prostate cancer with which I was diagnosed about a year back. Unlike some of the other similar sites, they have excellent persons, including medical doctors, putting the latest prostate cancer information in proper perspective as well as answering the related questions in the user forums.

2

Client Served

Rating: 5

I have been treated for Prostate Cancer, and have a family history of Prostate Cancer. I am also a physician and surgeon. I think that this website is the most thorough, impartial way to stay up to date with the latest news and reports of medical information with regard to Prostate Cancer, whether you are a medical doctor or a layman, a patient or a family member, or just interested in the subject. There is always a space for commentary, with a well-reasoned response from the "site-master" after each discussion. I recommend it with the highest possible praise.

Previous Stories
2

General Member of the Public

Rating: 5

This is an incredibly valuable website for the latest information about all aspects of prostate cancer-from controversies about screening or active surveillance, to the lastest information about surgical and radiation treatment, side effects of those treatments and also treatment of recurrent or distant disease. There is expert review of recent research, put into easily understood words for non medical personel. "Sitemaster" does and excellent job responding to comments as well. As both a physician (general surgeon) and prostate cancer patient myself, I am very grateful that it exists and have found little else online that compares as favorably.

2

Client Served

Rating: 4

Greatly helped by Prostate Cancer Internatrional after surgical treatment of my PC in 2008.

2 Manning H.

General Member of the Public

Rating: 5

In my opinion, every male who is old enough to be concerned with the possibility of having prostate cancer should read this web site. Every male who has an elevated PSA should read this web site. Every male who has prostate cancer should read this web site. Every male who has been treated for prostate cancer should read this web site. Indeed, every physician and every surgeon whose practice involves diagnosis or treatment of prostate cancer should read this web site. I stumbled on the Prostate Cancer Infolink during a web search, and the information and advice I received helped me to make treatment decisions which changed my life so much for the better that it seemed miraculous.

3

Advisor

Rating: 5

I am the Information Secretary for a UK Prostate Cancer Support Group and I find this site invaluable. I am downloading articles and reports from it all the time.Dennis Goffin

2

General Member of the Public

Rating: 5

Dear Sir:I am as suffer with prostate cancer gleason six,I have had people in our surronding area who have passed ,with this terrible disease. through your web pages and vidoes it has given me more info that has resured me that there is help out there and some confort that progress is continuing to be made.The medical profession seems to be divided as to what is the best process to follow ,watch and wait ,radiation or surgery Thanks very much for your help .regards Joseph mac Isaac

2

General Member of the Public

Rating: 5

The Prostate Cancer Information link is my primary source for all new information about prostate cancer. It always provides excellent summaries of all the latest developments and research.

1 Geoff M.

Client Served

Rating: 5

I was concerned as a 59 year old with prostate tests. This site helps men'look at facts and not fear. My generation was not informed about prostate health until guys lost much o their sexual ability from PC. We need go replace fear with facts. Some doctors miss that point. Thanks for this site!




1 Jim_21

General Member of the Public

Rating: 5

Prostate Cancer International provides an invaluable service for all men with prostate cancer. The information is up to date and presented in an easy to understand format.

1

Client Served

Rating: 5

This organization Prostatecancerinfolink (PCaI) done considerable work in the field of prostate cancer, making it a unique case, the most interesting site on the internet

2 Nick19

Client Served

Rating: 5

I was looking for answers and general information about prostate cancer. There were no support groups in my area that I could find. Dr. Scott explained what my test scores meant and encouraged me to keep looking for someone who cared about my outcome as much as I did. I found such a group and am very relieved to find this solution. Without a hands on support group, this web site and chant room was very helpful.

1

Client Served

Rating: 4

I am a retired physician. When I gave up the profession 15 years ago there was a definite lack of information/knowledge about prostatic cancer. This was true in both the public realm and most tragically in and among the medical profession. I shudder to think of the men we sent for TURs without other consideration than urinary flow. We just did not know better. Now I find myself a victim of my own ignorance. Since developing prostatic cancer I have begun to try to educate myself on the subject. I have read literally thousands of papers and reviews. Indeed I am now far better educated but really unable to help myself. I have searched for answers and found many contradictions. In this aearch for a information I have found several on-line sites which offer real information. Among these I find I read the "New Prostate Infolink" most often. Good information well presented. Still not everyting I could hope for but the best available.

2

Volunteer

Rating: 5

I am Chairman of a PC support group in the UK and write a monthly news letter for my members. I find the "new" prostate cancer info link tremendously helpful, nay essential, in this excercise. I trawl many websites and generally pick-up most of the emerging news stories but this news site puts things into perspective; translates lots of medical mumbo-jumbo and makes the obscure clear. Long may it continue.

1

Client Served

Rating: 5

Valuable source of sensible information. I found it very reassuring to be able to read the experiences of others.

1

Client Served

Rating: 5

I was able to gain valuable knowledge from this website that has afforded me and my husband to make wise choices regarding treatment options. This website has also been a blessing to us in that it is nice to know we are not alone in this fight. I am truly thankful for the people associated with this site.

1

Client Served

Rating: 5

Excellent site to learn and discuss specific issues, and even a broad spectrum of problems faced by those with Prostate Cancer.

1 Robert M.

General Member of the Public

Rating: 4

I am an advanced Prostate cancer patient. This site provides much needed info regarding new treatments and clinical trials. They even allow my remarks to stand when I disagree with their bias for using radiation treatments. They deserve to be mentioned for their commitment to patients in my condition.

Previous Stories
1

General Member of the Public

Rating: 4

A shill for x-ray treatments, but beside that, a source of info about current news in the PCa world. He still allows me to post on his site. I can disagree with him but this is a source of CURRENT info. This field is a moving target and patients are very hungry for news.

I would temper his advise with other sources.
malecare (who reviewed here) is a good source.
My site could be of interest if you would like a cure for early stage PCa.
pcact@blogspot.com Watchful waiting is NUTS!!!
Miliken thinks there will be a cure for PCa around 2015. I hope I am still alive to live it.

1 Elise C.

Professional with expertise in this field

Rating: 5

I am a Nurse, working mother, with a father who passed away in Nov 2011 with Advanced Prostate Cancer. Due to my involvement in his care, I have joined, participated, and also started various prostate cancer groups and forums. The New prostate cancer Info Link has been an absolute god send to me. You supply all the news/medical information I need, quickly, in one place, that I can then research and use to advise others looking for this information. Excellent job, please keep it up. You are a wonderful site and I couldn't give you any higher praise.

1

Client Served

Rating: 5

At possibly the most worrisome and scary moments in one's life, PCI is wonderful source of info and understanding.

2

General Member of the Public

Rating: 5

Read daily. It is informative and has caused me to look at my disease from a totally different perspective. Highly recommended to family and friends. Al Hagan Okotoks, Alberta, Canada

1 Keyo L.

General Member of the Public

Rating: 4

I was recently diagnosed with prostate cancer so I wanted as much information and support as I could get. This site is very helpful and supportive: if I have any questions about treatment I ask them and I always get a quick and full response.As a layman my condition seems quite complex, with many possible treatments combined with the possible decision to not have any treatment. Thanks to this site and my doctor's advice, I have now decided to have a radical prostatectomy as the odds of living longer after this treatment are more favourable that without.So it's a big thanks to the infolink people.

1

General Member of the Public

Rating: 5

info from this site helped me select active survellance instead of rp as my current treatment choice.

1

General Member of the Public

Rating: 4

I am the daughter of a Prostate Cancer (PC) patient. There is so much developing in the fight against Prostate Cancer right now, and it can be quite difficult to "run across" all the valuable information that is out there. THE 'NEW' PROSTATE CANCER INFOLINK does a wonderful job of putting a great deal of all this info in one place, making it much easier to keep apprised of progress in the fight against PC. I consult it every day and have discovered information that has been helpful to my dad (resulting in a drop in his PSA) that we were not otherwise aware of. Thank you Prostate Cancer International for this wonderful service!!

1

General Member of the Public

Rating: 4

This information service has been very useful in sorting out the vast range of data related to PC. PC has to be one of the most difficult cancers to determine a proper course of action. Valid treatment options range from doing nothing to radical interventions. Historically overtreatment may have resulted in the quest to fail safe and sometimes created outcomes worse than the disease (do no harm). The urologists have valid points to make but independant objective information is priceless.

1

General Member of the Public

Rating: 5

THE FIRST THING I DO EVERYDAY WHEN I CHECK MY EMAIL, WHETHER ON MY CELL OR COMPUTER IS LOOK FOR MY EMAIL FROM PROSTATE CANCER INFO LINK. I RECEIVE MUCH OF MY GUIDANCE WITH THE INFORMATION THAT I OBTAIN FROM THIS WEB SITE.HAVING UNTREATED PC AND DOING ACTIVE SURVEILLANCE. I LOOK AT MANY WEBSITES BUT THIS IS MY PREFERENCE BECAUSE OF THE CLEAR AND PRECISE AND UP TO DATE INFORMATION. THIS KEEPS ME INFORMED AND FRIENDS WORRIED ABOUT GETTING PC ARE ALWAYS ASKING QUESTIONS ABOUT THEIR PROBLEMS KNOWING I STAY UP TO DATE, BY READING THESE STUDIES I FEEL I MADE THE RIGHT CHOICE AS MY PCA3 TEST WENT FROM 94,5 IN 2010 TO 34 IN 2012 I WOULD LIKE TO THANK, YOU AND I'LL BE LOOKING FOR YOU TOMORROW. THANKS AGAIN.

2

General Member of the Public

Rating: 5

I can not say enough about how useful and helpful THE "NEW" PROSTATE CANCER INFOLINK has been to me over the last couple of years. It is a great place to keep up to date on the latest news on the topic and to give and share feedback on the many aspects of the topic. The Sitemaster keeps us all informed and never fails to respond to any questions.

1

Client Served

Rating: 5

I an an advanced cancer patient and I have gone through a lot of treatment. Dx'd at 49 years old with aggressive cancer that relapsed after primary treatment. I done a great deal of research and participated in several website/fourms. This site is the best. Mike Scott (sitemaster) does an outstanding job in providing even handed advice and education to patients and care givers. I really hate having cancer and this is one place I know I can go to get help advice or just a pep talk.

1

Client Served

Rating: 4

The New Prostate Cancer Info Link is fantastic. I received C yber Knife treatment in March 2012. The Info Link was helpful in helping me decide on going for it. It is very informative.

1

Client Served

Rating: 5

I would like to say big Thank you to this website and doctor, advisor. After receive the answer or advice, we went through the tough time and felt much better when your family and yourself fight against this dizaster. Doctor gave us suggest and answer each question even though he knew that we are at Canada and cannot be his patient. I would like to show my appreciation and feel much supportive. helen

1

Client Served

Rating: 5

I found the The "New" Prostate Cancer InfoLink Social Network a couple of months ago after I was diagnosed with a low-level form of Prostate Cancer. Of course, I tried to obtain as much information as possible from the Internet. I did not really know much (and was still in a state of shock about the diagnosis) when I decided to describe my situation on the site. Within a matter of a few hours, I received a personal reply from Mike Scott of the Network and then another response the following day. His responses were long and detailed, and personally oriented to me. I was extremely surprised and gratified. No other resource on the Internet gave me that type of personal service. signed: Dave Kalstrom

1 FranknBarbara M.

Client Served

Rating: 4

An informative site with links to lots of good PC information. Links to folks like Mike Scott who provides valuable comments to questions. LInks to articles coming on line which discuss the current thinking on PC topics.

1

Client Served

Rating: 5

The "New" Prostate Cancer Infolink was a great aid to myself and my spouse as I had to navigate the options that can be dizzying at times. On top of that, the network of people were very helpful as I was going through my chosen treatement. It was very comforting to know that someone, very knowledgeable was just a few clicks away. I highly recommend this site.

1

Client Served

Rating: 5

Wonderful site with up-to-date and very clear news. No need to go looking elsewhere.