RESOURCES FOR PROSTATE CANCER WOMEN

 

There seem to be surprisingly few websites dedicated to helping the partners of men through the tangle of emotions that goes with the diagnosis of a disease that is immediately assumed to be fatal. I don't pretend to understand the thought processes of women, despite a happy marriage of 42+ years (43 coming up later this month - October 2010) but I hope this page and the Links I give will help in some way to redress that gap.

People diagnosed with a potentially terminal illness will usually have reactions similar to the grief experienced by people who suffer the loss of a loved one or some other tragedy. There are various definitions of these reactions, perhaps the most well known being the five stages termed Denial, Anger, Bargaining, Depression and Acceptance. Discussion and good, open communication in this emotional storm can be difficult but are essential.

From the partners' point of view, the dreadful shock of hearing the word 'cancer' applied to a loved one is bad enough. Added to that is what one woman described as the 'guilt' she felt because, although the thought of losing her partner was terrifying, she was also very worried about her future - how would she cope? Of course that is an absolutely natural concern, but she felt that it was somehow 'wrong' and 'disloyal' to be worried about herself at a time like this. Men will sometimes react badly if such concerns are expressed by their partners. I think this is epitomized by the story one of my brothers tells of his break up with a girlfriend. He was trying to turn his Volkswagen Kombi around on a narrow, steep dirt road in the mountains and he felt her focus was wrong. Her main worry, so he said, was not if or how he would survive a plunge down the mountain, but how she would get home with his car wrecked down in the valley below. Some men will feel the same way about their partners' concerns and may even feel that their partner is 'letting the side down' by letting their own fears come to the fore.

The late Harry Pinchot's speech Roses For My Lady says many good things, but this is the crux of what he has to say, talking as a man with prostate cancer:

"We often become fixated with our problems and the fear of our own mortality, while at the same time becoming oblivious to the needs of our spouse. We must remember that she not only has to deal with our mood swings, declining health, unusual diets, anxiety over PSA test results, doctor visits, insurance and all the other issues relating to our disease that we deal with, but she must also face her own fears. These are real and pervasive fears which often are not fully shared with us. She must come to grips with the very real possibility of losing her spouse, her lover, her life partner, her best friend and often her primary source of income."

Tracy Carter Sondeen, who is Yana Member Eric Sondeen's wife, has written a very touching poem ANEURYSM that many who have a loved one diagnosed with prostate cancer will relate to.

The men will themselves have their own issues to deal with. The foremost of these is often the 'stiff upper lip' that is such an important definition of being a 'man' - cowboys don't cry. Men must never admit a weakness, They can deal with anything that comes their way, from a grizzly bear to a cancer diagnosis. And they can do it themselves. They don't need help. Added to this is the concern for their partner and family - they will often keep information to themselves rather than share and discuss it, worried that this will upset their loved ones even more. A committee of one can often get things wrong - and men who behave in this way are no exception to that rule.

Prostate cancer has another unique aspect that can affect relationships between men and their partners more cruelly than virtually any other disease. Both the disease itself and the treatments for the disease can and do affect sexual activity. This can creates tensions that may be difficult to address and are summed up well in the piece I have entitled Emotional Issues written by prostate cancer man Allan Meyer in which he emphasizes his view that:

"The most fundamental requirement is an ability to communicate with each other about these issues with love, candour, and acceptance. With that, a couple is on the road to success. Without it, they're stuck."

Roz Baker has also contributed some valuable insights into the important matters that must be dealt with for healthy Relationships to be maintained after a prostate cancer diagnosis.

So, difficult though it may be in the emotional aftermath of the diagnosis, I believe the most important first step is to acknowledge that the diagnosis and treatment choice is a joint problem, that both the man diagnosed and his partner must tackle these items as a team using their own individual strengths. Most couples will have faced some crises in their time together prior to the diagnosis and it may be useful for them to review how they dealt with those to develop a focus and a plan for dealing with the new problems. They should consider using professional help in developing their plan if they cannot deal with the issues themselves.

If this joint venture agreement can be agreed, it will make it easier to for both parties to attend medical consultations together, to make notes and ask questions, to search for, interpret and discuss the information required to come to the decision as to how best to proceed. It is very important to "Know The Enemy" or as Dr Strum puts it "Assess Status Before Determining Strategy". The point of these two assertions being that prostate cancer is not simply one disease - there are many varieties. Some of these are very much more dangerous than others but the majority of cases diagnosed in the modern era are what is termed Low Risk. The more that is known about a particular diagnosis, the easier it may be to pick the most appropriate therapy. This article The Prostate Cancer Quandary, published in the June 10, 2010 issue of Wall Street Journal summarises a study which claims to have identified 24 strains of prostate cancer with the majority presenting this low risk profile. A piece I wrote and titled The Elephant In The Room tries to focus on how to get to grips with the risk attached to a specific diagnosis. And although no one can ever give an answer to the question "How long ...... ??????" there are pointers as to the likelihood of survival being longer rather than shorter for most men diagnosed today.

Starting the process of getting to know the enemy can be daunting. Entering 'prostate cancer' into Google produces more than 10 million hits: 'prostate cancer treatment' produces almost 12 million. So were to start, what to do? Here is my suggested list of actions, based on what I would have done, knowing what I know now - and what I know is available now:

Click on the Don't Panic Button on this page and go through the site using the pages Don't Panic : Good News! : Diagnosis : Surviving : Treatment Choices : Resources to get the basics of the language and disease and/or

Read, download or order a copy (no charge) of the booklet A Strange Place to serve as a reference

Before any meeting or consultation, make notes of questions you want to ask; always attend consultations and meeting together if possible; if that's not possible try to ensure that a trusted friend is with there. If the doctor agrees, tape all meetings so that what is said can be reviewed and understood. It is important to make notes after each meeting and start a new list of questions

Obtain copies of all reports at all times and ask questions until you understand them: verify these reports with second (or more) opinions [my personal approach is to keep getting opinions until I find one that agrees with mine, but that is not for everyone!]

Because time with a doctor a is often limited other resources should be used to answer questions. Some institutions have Nurse Navigators, who can be a blessing. If they are not available, Support Groups, especially those where partners are welcomed can be helpful in answering questions.

Joining Forums Message Boards and Mailing Lists on the Internet enables questions to be put to the thousands of members of these sites, many of whom have deep knowledge of prostate cancer. One site 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. There is also a site, The Woman's Page which has some good basic advice for both man and woman. Another site dedicated to helping womenfolk affected by prostate cancer is hisprostatecancer.com. Elise Cotter has also set up a FaceBook page Ladies On Line which is aimed at providing a safe environment for women only to befriend each other and chat about issues that affect them.

Going through these steps, will gradually point to a conclusion as to what the best choice might be for the both parties. Inevitably in this process, the question of erectile dysfunction (ED) will have to be discussed and considered. All current treatments will affect the erectile function of a man to a certain degree. Just how much effect there will be is impossible to forecast on an individual basis. Some men have very few problems, others never recover. In considering the claims made by various institutions offering treatment, be aware that many of these claims may be based on definitions that might not equate to what you think they mean.

There are some links on the Yana site to pages and other sites that might help to focus on the ED issue:

Prostate Cancer and Intimacy- PCAI is a mailing list for frank and open discussion of the sexual issues surrounding PCa.

Frank Talk is a website dedicated to helping Prostate Cancer patients deal with Erectile Dysfunction. While this site is primarily for Prostate Cancer survivors, any man with a question about ED is more than welcome. This site lives up to its name - do not visit if you are at all offended by frank, blunt talk about sexual matters.

An article on the September 30, 2010 issue of The Vancouver Sun entitled Prostate removal surgery and sex: 'Very few men... are the same as before'

Husband and wife team Stephan Wilkinson and Susan Crandell contributed their views on erectile dysfunction for the book Over the Hill and Between the Sheets: Sex, Love and Lust in Middle Age after Stephan's radical prostatectomy. These excellent pieces show clearly some of the differences between the way men and women regard the issue and are well worth reading. Susan's essay is What's Sex Got To Do With It? and Stephan's is entitled Mechanical Failure.

Sex therapist Bettina Arndt collected data from a number of men on the site for her book What Men Want - In Bed which is all about why sex matters so much to men - there is also a link to Bettina's discussion Forum.

Virginia Laken's husband Keith had surgery at 50 years old and the consequences of his impotency were near devastating on their relationship. Their book Making Love Again: Hope for Couples Facing Loss of Sexual Intimacy is written from both points of view. .

The New York Times carried an article entitled Sex After Prostate Surgery which may not of itself contain much of interest. what may be worth reading are the 523 comments

A MiniPoll conducted on the Yana site in mid 2010 entitled What Were You Told? covers some the 'minor' side effects that are rarely openly discussed

A piece by Yana Mentor, Lenny Hirsch entitled Sex after Radical Prostatectomy

A piece by Peter Griffiths entitled Sex and Prostate Cancer

Mentor Glen Leslie's 'no punches pulled' piece - not for the faint hearted Erections - What Most Men Won't Talk About but They All Want to Know About

Use It or Lose It is a summary of a study that suggests that it is important to use drugs and other devices sooner rather than later to prevent penile atrophy

The Experiences that men relate (indexed by Treatment Choice, Year of Diagnosis, Age, PSA and Gleason Score) rarely touch on emotional issues, although some do. Many of them do deal with the physical aspects of therapy.

Hopefully this page, no doubt incomplete in many aspects of this very complex subject, may help women who might visit. If you have anything you think might add to the page - Links, articles, websites please Mail Terry.