Prostate Cancer Survivors Resources

Our initial aim is to provide basic information - and links to more detailed sites - for people who have recently had the news of a prostate cancer diagnosis. The links to the relevant pages are shown below. If you hit the "Don't Panic" button an arrival, and followed instructions, you will have been to these pages already.

The secondary focus is to show that you are not alone. Thousands of people have been down the road ahead of you and hundreds of them (almost 1,100 at last count in July 2011 when, due to work pressures, the stories were no longer uploaded)) have told their stories. Most of these men have left their e-mail addresses and will respond to any questions you might have. Their stories are indexed here.

There is a similar, but improved version of the YANA Experiences section which has been developed in Switzerland. The Swiss site is called myProstate All information on the site is available in two languages - English and German - at present and contributions can be translated into four languages - English German, French and Spanish. There are many excellent features such as summaries of side effects of various therapies and drugs, graphs that plot PSA (and other) results, and many others. For some preliminary help in understanding the terms and maximising the value, please go to Using the myProstate site.

The DISCUSSION FORUM enables you to be in touch with other Yana people if you have any specific questions and here is a bit ABOUT US. Finally, if you need a bit of a lift, you might find something at TROOP C

Listed below some of the resources and other sites on the web which you may find helpful. This is a small selection of the many sites available, but they are ones which we think are particularly helpful. There is also the SEARCH ENGINE above. If there are any other sites you can recommend or if you want more specific information email Terry

Although much of the focus of any prostate cancer site is inevitably on the effect of the diagnosis on the man who has been told he has the disease, it is a fact that his partner is inevitably also deeply affected by this shocking news. Roses For My Lady - a marvellous speech by Harry Pinchot should be read by every man, as should Alan Meyer's Emotional Issues.

There are relatively few places where women can seek the company of other women or where their specific issues are discussed or linked to appropriate sites. Hopefully this Link FOR THE WOMENFOLK will help. I'd ask any women who have found other areas of support to mail Terry and give the site address.

Although there is good information on the sites linked below, you may find them confusing and you might prefer to "talk" to people dealing with the same issues. There are many places on the Internet where you can do this apart from the Forum on this site. Here are some of the Message Boards and Lists focussing on prostate cancer which can provide both information and support. Some Lists focus on specific issues or treatment and some are general Lists. The latter tend to have quite high volume traffic - at their peak maybe 20 or 30 messages a day. Many of these will not be of particular interest and because of this many people prefer the quieter Lists with less traffic - and, of course, less information.

One of the largest Lists is the Prostate Problems Mailing List (PPML). This is described as an unmoderated forum which discusses problems and treatments related to men's prostate gland. Discussion includes symptoms, diagnosis, treatment alternatives, complications and personal impact. The intent is to help patients and their loved ones understand their illness and make informed treatment decisions; to encourage self-study of the effects and treatment of prostate diseases; and to support research into the cause and cure of prostate problems as well as encourage effective health care. To subscribe to the PPML: Access this URL and follow the instructions

A Strange Place: This is a simple Information Guide to Prostate Cancer written by Terry Herbert, long time prostate cancer survivor and owner of this site. It was developed primarily as a booklet for men with no access to the Internet, and is a useful source of basic information. You can read the booklet at A Strange Place There is also a printable pdf version available at this link, but as it is 42 pages in all, for those who don't want to print it out, a hard copy is available, free of charge. Click on the cover [left] or mail Terry giving details of your postal address.

If you want to listen to discussions - or ask a question - then you can go to Dr Israel Barken's Call In Show which is on Tuesdays between 6.00 pm and 7.00 pm US West Coast time and which can be accessed by Skype - a useful point for a nyone living outside the USA. Pas discussions are archived on site, which also contains a good deal of very useful information. Dr Barken also offers one on one discussions - or coaching - for a fee.

Donna Pogliano, a prostate cancer activist has some Advice to the Newly Diagnosed which is well worth reading and printing to keep. Donna felt some years ago that there was not enough basic information available about prostate cancer and wrote A Primer on Prostate Cancer. This grew into a book which she co-authored with Dr Strum and which is a wonderful source of very detailed information. It is not an 'easy read' to glance through while lounging by the pool, but it allows laypeople to get a good understanding of complex medical issues. The full title of the book is A Primer on Prostate Cancer. The Empowered Patients Guide. The ISBN number is 0-9658777-6-0 and it has been available at Amazon and Barnes & Noble as well as at the Life Extension Foundation site, whose support saw the book published. It is also worth searching sites like AbeBooks for cheap second hand copies. In November 2011 an e-book version (Kindle) was published.

Us TOO has prepared a list of popular books available on prostate cancer subjects, as read by the many men and women of their support group chapters and Prostate Pointers online discussion communities.

Long time survivor Charles (Chuck) Maack has authored and compiled several papers regarding many of the aspects of prostate cancer and its treatment which are very helpful in gaining a better understanding of many of the key factors. He is also in a PCRI video Lets Talk About Prostate Cancer. Some papers have been posted when received from Chuck's physician friends. You can find these papers on the US-TOO, Wichita Chapter website.

Dr John McHugh, a urologist who was diagnosed in 2007 has a very informative website Prostate Diaries and an excellent section presenting his views on the decision making process - specifically the McHugh Cheat Sheet and McHugh Decision Sheet.

The Fullerton Prostate Forum has a large video library on prostate cancer and related subjects. These videos were made by Lew Pfeffer, a 15-year survivor and currently the Chairman of the Fullerton Prostate Forum. They were made using a digital video camera and are available on DVD. They are not studio quality, but contain a lot of valuable information that is not readily available to most prostate cancer patients.

An site that is excellent and provides what is probably the widest range of current technical information as well as links to many relevant sites is The Palpable Prostate. A very useful aspect of the site is the guide to free downloadable material. The Palpable Prostate couold reasonably be called the Prostate Cancer Wikipedia.

Another good site for information, especially for men in Britain the Prostate Cancer Charity site. They have what they term a ToolKit and a good Forum.

Some men have considerable problems with their unsurers, especially if they wish to choose therapies that might be regarded as experimental by some insurers and not by others. Laurie Todd is a Health Care advocate in the US and she wrote a book "How to fight your insurance company and win" which may be useful in these circumstances.

Malecare originally operated only in New York city, although they now have got groups in California, New Jersey and Texas and Italy and aim to add more groups as time goes by. Their workshops, lectures, treatment and support groups provide cancer education to men diagnosed with prostate cancer, testicular cancer and male breast cancer. Their website has over two hundred patient and doctor written articles and has articles in French, Italian, Spanish and Hebrew. They also have a section for gay men. The Living with Prostate Cancer Foundation has a site in Hebrew dealing with all aspects of PCa. Included in the site is direct contact with eight leading doctors, a mentor system similar to this Yananow site. The Foundation organizes support groups and work shops throughout Israel.

There is also evidence that the expertise of the medical team carrying out the procedure has a direct bearing on the likely outcome. The more experienced they are, the less the likelihood of side effects. There is a good piece on How To Pick A Good Surgeon - the same principles would apply to choosing any medical team. John Chandler says that he maintains what he regards as the best list of supposedly good RP surgeons in the U.S. and Europe. He also maintain lists of U.S. specialists in imaging, radiological oncology, and medical oncology and will e-mail these lists to anyone requesting them. (Of course no guarantee is made concerning the performance of any given physician.) Chuck Maack also maintains a list of the Best Physicians in the (US) Nation. Although there is much disagreement about what the best treatment might be, there no doubt about the fact that the best results come from the best operators, so it is worth contacting John and Chuck.

Harry Pinchot, a prostate cancer activist had an important message in this speech he delivered at a conference some years back. Simply put it is that Prostate Cancer is a disease which afflicts not just the man with the prostate but also his partner. He makes some telling points in this speech. Every man should take his words to heart. Harry passed on after fighting the good fight in January 2008.

The Prostate Cancer Research Institute is a non-profit organization that claims to have done more tangible important things to help men with prostate cancer than any other organization. The site certainly contains excellent technical information for those who want to try and make some sense of this disease.

If you haven't been diagnosed, there are two papers that you should read. One is What Every Man Should Know (Click here for US Version: Click here for British Version) and the other is What Every Doctor Who Treats Male Patients Should Know(Click here for US Version: Click here for British Version). Even if you have been diagnosed, you might find it useful to read it through these papers.

Phoenix 5 Robert Young was diagnosed with very advanced prostate cancer at a fairly young age. Regrettably he lost his fight against the disease, but he left as his legacy a wonderful site. Many of the sections deal with the personal issues faced by all of us.

The home page of National Cancer Institute gives all the latest information about prostate cancer and a host of other information.

A site which emphasises an integrative medical approach is the Prostate Awareness Foundation . They have regular meetings in San Francisco and have organised fundraising hikes and climbs to places such as Mt Kilimanjaro.

Medical Info on Line summarises and reviews some key prostate cancer websites - including Yana.

Men's Health is a general health site with some interesting links - including Yana!

The e-Medical Journal of Australia is a comprehensive store of Medical Information about a variety of different treatments, both natural and orthodox. Enter what you are looking for in the "Search This Site" box and you will be taken into a whole world of information on a wide variety of topics and treatment.

PCNG's 100 Links is a very full List of resources with which you can home in on the area where you need more information. Another site with an excellent collection of Links is the FACT site which describes itself as The resource guide for people with serious ailments, and their caregivers.

The Site Search Engine below may help you find anything specific that you are looking for.

If you find any links that do not work as you go through the site it would help us enormously if you could report these to Terry.

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