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YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

 

SURVIVOR STORIES  :  DISCUSSION FORUM  :  WIVES & PARTNERS  :  TELL YOUR STORY  :  UPDATE YOUR STORY  :  DONATIONS  :  TROOP-C

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RESOURCES

Looking for something specific? You can use this Site Search Engine to help you find specific items of interest on this site.

ABOUT THE SITE AND THE BASIC SITE RESOURCES

The site was developed in 1998 when there was little information available for men or their partners about prostate cancer and what to do when diagnosed. None of us had any medical training but we felt, and still do, that we are able to share the knowledge we have gained over the years and point people in the right direction. If you're interested in the detail go along to ABOUT US.

The site is absolutely independent and we have never sought, nor will we, any endorsement or funding from any organization. In that way we can maintain our integrity and freedom. Although we seek no fees or payment for what is provided on the site, we do have ongoing costs and if you wish, you can DONATE towards these costs, using credit cards or PayPal.

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 and thus fulfill OUR AIM:

To provide comfort to any man diagnosed with prostate cancer, to offer thoughtful support to him and his family and to help them to decide how best to deal with the diagnosis by providing them with and guiding them to suitable information, being mindful at all times that it is the individual's ultimate choice that the path he decides to follow is his own and that of his family, based on his particular circumstances.

The links to the relevant pages showing this basic information are shown below. If you hit the "Don't Panic" button an arrival, and followed instructions, you will have been to these pages already.

DON'T PANIC : GOOD NEWS! : DIAGNOSIS : SURVIVING : TREATMENT CHOICES

This page provides additional resources beyond those pages under these headers:

WHAT DID OTHER MEN DO?

INTERACTING AND GETTING IN TOUCH WITH OTHERS

NOT SIMPLY A MAN'S DISEASE

BOOKS AND VIDEOS

INFORMATION SITES

YOU HAVE TO LAUGH SOMETIMES

WHAT DID OTHER MEN DO?

The secondary focus of the site is to highlight the fact that you are not alone. Thousands of people have been down the road ahead of you. They have all had to make the difficult decisions you face if you are newly diagnosed or if you have had a treatment failure.

The most natural question in the world when we are faced with this kind of dilemma is to ask "What did other men do?" More than 1,400 men have told their stories (as of May 2015). Most of these men say how they were diagnosed, why they chose their particular therapy and what the outcome has been. Some stories go back twenty years or more, showing only too clearly that there is indeed a life after a prostate cancer diagnosis. Most of the contributors have left their e-mail addresses on their story and will respond to any questions you might have. The stories are INDEXED HERE and it is possible to search for them by any number of criteria - age, PSA, Gleason, staging at diagnosis, location, selected treatmented method, etc.

In late 2014, long-time YANA member John Bonneville prepared an analysis of the database of YANA Survivor Stories, based on age, location, treatment choices, and so on. That analysis provides some interesting information, but it may not be sufficient to draw any specific conclusions about whether any one treatment method is better than another. You can download the analysis in Adobe Acrobat (.PDF) format by clicking HERE (approximately 11 MB).

There is a similar, but more complex version of the YANA Experiences section which has been developed in Switzerland. The Swiss site is called myProstate All information on that 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 the consequences of various therapies and drugs, graphs that plot PSA (and other) results, and many others. For some preliminary help in understanding the terms and maximizing the value, please go to USING THE MYPROSTATE SITE.

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INTERACTING AND GETTING IN TOUCH WITH OTHERS

The suggestion is made in SURVIVING PROSTATE CANCER to LOOK FOR SUPPORT by joining one of the many support groups. Some men feel uncomfortable about discussing personal issues face to face; some live in areas where there is no such group. For those men there are many places on the Internet - so called Forums or Mailing Lists - where they can "talk" to people dealing with the same issues. For other men, these Internet sites are used in addition to joining support groups and contacting the YANA men who have shared their stories. For basic information as to how Forums and Lists operate it worthwhile to read the FAQ - FREQUENTLY ASKED QUESTIONS on the subject.

The Yana DISCUSSION FORUM enables you to be in touch with other Yana people if you have any specific questions. It is a fairly low volume site - between 50 and 70 people may read a post you put there, so you may not get a good response to a question you pose. A selection of those focusing on prostate cancer which can provide both information and support are shown on the MAILING LIST page. One Forum of particular interest to the wives and female partners of diagnosed men is A PROSTATE CANCER FORUM FOR LADIES ONLY a group dedicated to educating women about Prostate Cancer; its treatments and side effects

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. FaceBook sites are also beginning to be of great comfort to users of Social Networking and JOURNEY WITH PROSTATE CANCER is one which is praised by many visitors.

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NOT SIMPLY A MAN'S DISEASE

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 marvelous 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 the page WIVES & PARTNERS will help. One Forum of particular interest to the wives and female partners of diagnosed men is A PROSTATE CANCER FORUM FOR LADIES ONLY a group dedicated to educating women about Prostate Cancer; its treatments and side effects. If anyone has found other areas of support for women please E-MAIL US and give the details.

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 E-MAIL US.

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BOOKS AND VIDEOS

It is simply not possible to list all the many books on the subject of prostate cancer. It is best to ask others which books they have found useful or to check with a support group library. Some of the material available is shown below.

A Strange Place: This is an Information Guide to Prostate Cancer written in simple language by Terry Herbert, who was the founder 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. As it is 36 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 us giving details of your postal address.

WINNING THE BATTLE AGAINST PROSTATE CANCER. GET THE TREATMENT THAT'S RIGHT FOR YOU is authored by Dr Gerald Chodak who has worked for many years to try and ensure that men diagnosed with prostate cancer make the decisions that suit them and their diagnosis. His book was published in December 2010. If you like to obtain information by viewing Video files rather than by reading, then there are two options you might like to consider. You can go to go to VOOK and buy PROSTATE CANCER: REDUCING YOUR RISKS a publication written and produced by Dr Chodak or you can also visit his informative site loaded with videos at PROSTATE VIDEOS.

A PRIMER ON PROSTATE CANCER. THE EMPOWERED PATIENTS GUIDE. Is co-authored by prostate cancer activist Donna Pogliano and Stephen B. Strum, MD. This 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 ISBN number is 0-9658777-6-0 and it has been available at Amazon 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 a KINDLE VERSION was published.

Donna has unfortunately retired from active prostate cancer work, which is a great loss because she did some amazing work. She originally felt, back in the late 1990s that there was not enough basic information available about prostate cancer and wrote the initial A PRIMER ON PROSTATE CANCER. This very good piece grew into the book which she co-authored with Dr Strum. A prime example of Donna's "take no prisoners" approach is ADVICE TO THE NEWLY DIAGNOSED which she wrote in 2004. Much of what she said is valid still at the time of writing this - 2012. It is well worth reading and printing.

ASK DR MYERS BLOG Dr Charles "Snuffy" Myers is a well known practicing prostate cancer specialist. This blog has his weekly videos which he makes in response to a specific question but which illustrate broad principles. There is an enormous archive that is accessible.

PROSTATE FORUM OF ORANGE COUNTY, CALIFORNIA was previously known as Fullerton Prostate Forum. The forum has a large video library on prostate cancer and related subjects. These videos were made by a board member of the forum. They were made using a digital video camera and are available on DVD, with some available as streaming videos. They are not studio quality, but contain a lot of valuable information that is not readily available to most prostate cancer patients.

BOOKS OF INTEREST FOR PROSTATE CANCER PATIENTS AND THEIR FAMILIES The US TOO organization regularly collects suggestions for suitable reading matter. This part of their site shows lists of popular books available on prostate cancer subjects, as suggested by the many men and women of their support group chapters and online discussion communities.

PSA IN PROSTATE CANCER: WHAT PATIENTS NEED TO KNOW This video was developed with a few world renouwned urologists, and it tackles one of the most pressing issues for men with prostate cancer: what does a rising PSA mean?

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INFORMATION SITES

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

THE "NEW" PROSTATE CANCER INFOLINK claims to offer the most user-friendly and personalized prostate cancer on the web. The claim can be justified. The analysis of the latest developments to do with prostate cancer helps to understand what are sometimes misleading media reports.

PROSTATE DIARIES a site established by Dr. John McHugh, a urologist who was diagnosed in 2007 has very good information and an excellent section presenting his views on the decision-making process - specifically the MCHUGH CHEAT SHEET and MCHUGH DECISION SHEET.

THE PROSTATE ADVOCATE is the website of long time survivor CHARLES (CHUCK) MAACK who has authored and compiled many papers regarding 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 LET'S TALK ABOUT PROSTATE CANCER.

PROSTATE CANCER UK has a wide variety of top quality information and is another good site for information, especially for men in Britain. The downloadable DIAGNOSIS page is especially useful for newly diagnosed men in Britain.

MALECARE originally operated only in New York city, although they now have got groups in California, New Jersey and Texas and Italy. Their workshops, lectures, treatment and support groups provide cancer education to men diagnosed with prostate cancer, anal cancer, testicular cancer and male breast cancer. Their website has articles in French, Italian, Spanish and Hebrew and they also have a section for gay men.

PAACT (PATIENT ADVOCATES FOR ADVANCED CANCER TREATMENTS) has a somewhat misleading name, since the information on the site is certainly not only in respect of advanced prostate cancer. It is one of the oldest support organizations as it was founded in 1984 You will find a wealth of accurate and reliable information on Prostate Cancer and also BPH (Benign Prostate Hyperplasia) and Prostatitis. The quarterly free magazine Choices always has information of interest and back copies can be accessed.

PROSTATE CANCER RESEARCH INSTITUTE is a nonprofit 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 and it is worth subscribing to the quarterly magazine Insights and reading the back numbers on site.

PROSTATE CANCER VICTORY is a website that contains some excellent information and articles about diagnosis and treatment methods.

PROSTATE AWARENESS FOUNDATION emphasizes an integrative medical approach prostate cancer. They have regular meetings in San Francisco and have organized fundraising hikes and climbs to places such as Mt Kilimanjaro in Africa and a number of sites in the US.

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 are timeless as they deal with the personal issues faced by all of us.

ZERO - The End of Prostate Cancer is a national non-profit organization in the U.S. with the mission to end prostate cancer. They lead the fight to end the disease by advancing research, encouraging action, and providing education and support to men and their families.

HOW TO PICK A GOOD SURGEON is important because there is 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. 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 US and Europe. He also maintain lists of US 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 e-mailing JOHN and CHUCK.

'FIGHT YOUR HEALTH INSURER AND WIN' Laurie Todd is a Health Care advocate in the US and she wrote a book because men have considerable problems with their insurers, especially if they wish to choose therapies that might be regarded as experimental by some insurers and not by others. This book may be useful in these circumstances.

PARKWAY CANCER CENTRE is a group of doctors and hospitals in Southeast Asia, with headquarters in Singapore, and additional facilities located in Indonesia, Malaysia, Cambodia, Myanmar, Philippines, Bangladesh, Sri Lanka, Vietnam and Russia. They offers comprehensive cancer treatment with a highly skilled, multi-disciplinary team comprising consultant medical specialists, nurses, counsellors and other para-medical professionals to meet the specific needs of cancer patients.

SENIOR HOMES - HOSPICE CARE CENTER assists in finding a hospice where appropriate. The value of hospice care is dealt with in our piece THE ELEPHANT IN THE ROOM.

PUBLIC HEALTH - CANCER IN AMERICA provides statistics and other useful information about Prostate and other forms of cancer.

WHAT MEN AND DOCTORS SHOULD KNOW If you haven't been diagnosed, there are two papers that you should read. One is What Every Man Should Know (US VERSION: BRITISH VERSION) and the other is What Every Doctor Who Treats Male Patients Should Know (US VERSION: BRITISH VERSION). Even if you have been diagnosed, you might find it useful to read it through these papers.

HEALTHLINE provides information and news for people and families living with prostate cancer.

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YOU HAVE TO LAUGH SOMETIMES

Finally, although faced with a serious diagnosis which may be life threatening, we all have to have a bit of time out. Laughter is undoubtedly some value in our battle for continued good health and life without laughter is not much fun. So when you need a break and a bit a lift, you might find something at TROOP C - The Royal Order Of Prostate Cancer. A personal favorite is COCKROACH ANALOGY

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If you missed the Site Search Engine at the top of the page, here's another which may help you find anything specific that you are looking for on the site.

If you find any links that do not work as you go through the site it would help us enormously if you could MAIL US with a brief description of the problem you observed.

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SURVIVOR STORIES : FOR THE WOMENFOLK : TROOP C : ABOUT US : DONATIONS

DON'T PANIC : GOOD NEWS! : DIAGNOSIS : SURVIVING : TREATMENT CHOICES