A Woman's Guide to Prostate Cancer Treatment

September 29, 2010

A group calling themselves Women Against Prostate Cancer has

published a booklet A Woman’s Guide to Prostate Cancer Treatment

claiming to educate women and their families

about the variety of prostate cancer treatments that are available and some of

the key factors that will come into play when choosing a treatment path. The

link to the booklet is here http://tinyurl.com/FemGuide

I looked at the booklet because I thought it might be

a useful addition to my site, but I must say that I expected something more of

a focus on what the diagnosis meant for women, because they are affected

in different ways to men. I recall one woman contributor to an Internet List mentioning

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.

I don't pretend to understand the thought processes

of women, despite a happy marriage of 42+ years (43 coming up next month!) but

if this is a general view, or if there are similar views, then I would have

thought that a booklet specifically aimed at women would mention this.

The other aspect is side effects. Side effects of

surgery are brushed over whilst potential side effects for other choices are

listed and potential side effects for Active Surveillance are not

mentioned at all. Since ED is such a focus for men and probably has the

greatest potential for harming a relationship, again, I would have thought that

a booklet aimed specifically at women would have made more of this and

suggested some ways that such an issue might be dealt with.

But.....I'm only a man. I'd be really interested in

hearing from any women on this List - either on the List or off (my e-mail

address is yananow@... ) as to their perception of the value of this

booklet and if there are other (and perhaps better) resources specifically for

women on the Internet for me to link to from my site.

All the best

Prostate men need enlightening, not frightening

Terry Herbert - diagnosed in 1996 and still going

strong

Read A Strange Place for unbiased information at http://www.yananow.net/StrangePlace/index.html

September 30, 2010

Terry --

The Vancouver Sun newspaper has been running a 4-part series on prostate cancer.

Today's article was about prostate cancer and sex, and its effect on couples.

My wife and I were one of the sources.

It's one of the better things I've read, and gives a good sense of the range of

outcomes (physical and emotional). Available here:

http://www.vancouversun.com/health/Prostate+removal+surgery+Very+same+before/360\

0403/story.html

or

http://tinyurl.com/2b65yv9

You might want to add the link to YanaNow.

We live in a sex-free society. There's lots of tittilation, innuendo, and

suggestion. But to actually _talk_ about sexual issues and problems, seriously

and in depth -- that's still very hard for most people. And it's just as hard

for most doctors.

>

> A group calling themselves Women Against Prostate Cancer has published a

> booklet A Woman's Guide to Prostate Cancer Treatment claiming to educate

> women and their families about the variety of prostate cancer treatments

> that are available and some of the key factors that will come into play when

> choosing a treatment path. The link to the booklet is here

> http://tinyurl.com/FemGuide

>

> I looked at the booklet because I thought it might be a useful addition to

> my site, but I must say that I expected something more of a focus on what

> the diagnosis meant for women, because they are affected in different ways

> to men. I recall one woman contributor to an Internet List mentioning 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.

>

> I don't pretend to understand the thought processes of women, despite a

> happy marriage of 42+ years (43 coming up next month!) but if this is a

> general view, or if there are similar views, then I would have thought that

> a booklet specifically aimed at women would mention this.

>

> The other aspect is side effects. Side effects of surgery are brushed over

> whilst potential side effects for other choices are listed and potential

> side effects for Active Surveillance are not mentioned at all. Since ED is

> such a focus for men and probably has the greatest potential for harming a

> relationship, again, I would have thought that a booklet aimed specifically

> at women would have made more of this and suggested some ways that such an

> issue might be dealt with.

>

> But.....I'm only a man. I'd be really interested in hearing from any women

> on this List - either on the List or off (my e-mail address is

> yananow@... ) as to their perception of the value of this booklet

> and if there are other (and perhaps better) resources specifically for

> women on the Internet for me to link to from my site.

>

> All the best

>

> Prostate men need enlightening, not frightening

>

> Terry Herbert - diagnosed in 1996 and still going strong

>

> Read A Strange Place for unbiased information at

> http://www.yananow.net/StrangePlace/index.html

>

September 30, 2010

Hello

Cohen,

Thank you for

sharing the newspaper article that included a video regarding penile

injections. An excellent article, and providing much more and in the

right direction than the booklet. I hope the article remains available on

the internet. Now we just need to combine the information in the newspaper

article with more input from our several women participants on these prostate

cancer support lists regarding the emotional issues they found they had to deal

with that likely included a partner who clamed up and didn’t want to

discuss his emotions, or men who completely shut themselves away from partner

and family because of their ill-conceived embarassment at abilities they feel

they have lost, how they were able to continue intimacy despite impotence, and

I’m sure there are many other issues that the partner has had to

experience. We need that information for those caregivers of newly

diagnosed men who will be running into these issues and obstacles, and how you

gals overcame them. PC survivor Ralph Alterowitz and his wife Barbara,

both sexual therapists/counselors have done this in the past with their book “Intimacy

with Impotence – The Couple’s Guide to Better Sex after Prostate

Disease” available at www.renewintimacy.org. The have a new book in the works " The Lovin'

Ain't Over for Women with Cancer " that will likely address many of these

same issues.

Chuck

Always as close

as the other end of your computer to help address any prostate cancer concerns.

" What you

leave behind is not what is engraved in stone monuments, but what is woven into

the lives of others. "

(Chuck)

Maack/Prostate Cancer Advocate/Mentor

Wichita, Kansas

Chapter, Us TOO

Biography: http://www.ustoowichita.org/leaders.cfm?content=bio & id=1

Email: maack1@...

Chapter Website

" Observations " : http://www.ustoowichita.org/observations.cfm

From: ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of C

Sent: Thursday, September 30, 2010 1:57 PM

To: ProstateCancerSupport

Subject: Re: A Woman's Guide to Prostate Cancer

Treatment

Terry --

The Vancouver Sun newspaper has been running a 4-part series on prostate

cancer. Today's article was about prostate cancer and sex, and its effect on

couples. My wife and I were one of the sources.

It's one of the better things I've read, and gives a good sense of the range of

outcomes (physical and emotional). Available here:

http://www.vancouversun.com/health/Prostate+removal+surgery+Very+same+before/3600403/story.html

or

http://tinyurl.com/2b65yv9

You might want to add the link to YanaNow.

We live in a sex-free society. There's lots of tittilation, innuendo, and

suggestion. But to actually _talk_ about sexual issues and problems, seriously

and in depth -- that's still very hard for most people. And it's just as hard

for most doctors.

>

> A group calling themselves Women Against Prostate Cancer has published a

> booklet A Woman's Guide to Prostate Cancer Treatment claiming to educate

> women and their families about the variety of prostate cancer treatments

> that are available and some of the key factors that will come into play

when

> choosing a treatment path. The link to the booklet is here

> http://tinyurl.com/FemGuide

>

> I looked at the booklet because I thought it might be a useful addition to

> my site, but I must say that I expected something more of a focus on what

> the diagnosis meant for women, because they are affected in different ways

> to men. I recall one woman contributor to an Internet List mentioning 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.

>

> I don't pretend to understand the thought processes of women, despite a

> happy marriage of 42+ years (43 coming up next month!) but if this is a

> general view, or if there are similar views, then I would have thought

that

> a booklet specifically aimed at women would mention this.

>

> The other aspect is side effects. Side effects of surgery are brushed over

> whilst potential side effects for other choices are listed and potential

> side effects for Active Surveillance are not mentioned at all. Since ED is

> such a focus for men and probably has the greatest potential for harming a

> relationship, again, I would have thought that a booklet aimed

specifically

> at women would have made more of this and suggested some ways that such an

> issue might be dealt with.

>

> But.....I'm only a man. I'd be really interested in hearing from any women

> on this List - either on the List or off (my e-mail address is

> yananow@... ) as to their perception of the value of this booklet

> and if there are other (and perhaps better) resources specifically for

> women on the Internet for me to link to from my site.

>

> All the best

>

> Prostate men need enlightening, not frightening

>

> Terry Herbert - diagnosed in 1996 and still going strong

>

..

September 30, 2010

I don't have any statistics to support this and wouldn't know

whether they exist or where to look for them. However, if I had

to guess, I would guess that half or more of married couples of

all ages have never worked out a fully satisfactory sexual

relationship even before cancer intervened. I would further

surmise that the great majority of older couples in that boat

gave up long ago and no longer try to work things out. They

either have no sex at all, or have it in rather formal,

simplified, unchanging patterns that they worked out years before

as minimally acceptable and stuck with because any attempt to

progress was rebuffed by the other partner. Tired and humiliated

by the psychological pain of rejection, they turn to other

pursuits instead.

Now add impotence to this relationship and a difficult

relationship becomes impossible. It can be an excuse for either

partner to completely give up even minimal efforts at physical

intimacy.

It may sound like I am talking about women who reject sex with

their husbands, or accept it only under specific and not very

common circumstances. That certainly happens. However I'm sure

that the problem exists very much on the male side as well, for

example with men who have never really tried to find out what

their partners might like or how to satisfy them, or perhaps

tried briefly and quit very quickly when they found out that what

they were doing wasn't working or that their embarrased wives

didn't respond very quickly.

If I'm right about this then, for a great many couples, achieving

a successful adaptation to impotence has very little to do with

injections, pumps, pills, or implants. Sometimes those things

just enable them to re-establish an already broken relationship

that has to be re-established as it was, even if it requires

major surgery on the penis, because any change, for example oral

and manual sex, is unthinkable.

Sex and physical intimacy are so complicated, so psychological,

so fraught with deep desires, so burdened with past history, that

the physical issues related to impotence just can't be addressed

as if the inability to get or sustain an erection is fundamental

to the issue. There's no doubt that it's significant, but I

believe that other issues are much more fundamental.

The most fundamental requirement is an ability to communicate

with each other about these issues with love, candor, and

acceptance. With that, a couple is on the road to success.

Without it, they're stuck.

So, by all means, cancer survivors should share information about

pills, pumps and the rest of it, but we shouldn't imagine that,

in sharing this information, we are addressing basic issues. The

basic issues remain deeply personal and deeply founded in the

whole history of a relationship. More often than not I think

what people really need is serious communication. They need to

talk freely with each other about how they feel, about what the

effect of impotence has been, about how to work around the

problems and help each other, about how to retain and grow their

intimacy in spite of the effects of the cancer.

Sometimes a good counselor can help facilitate this for couples

who want things to work but are having trouble communicating on

their own.

At any rate, and for whatever it's worth, that's my impression.

Alan

September 30, 2010

Hi Terry. I briefly looked over this pamphlet and just found it to be a general

guide to prostate cancer and quite frankly, there's much better information out

there. Women can turn to the same sources as men - my husband and I purchased

several books that were recommended and both read through them.

And I agree - if it was supposed to be geared towards women, then I would really

expect more information on the emotional impact. I can tell you it's been a

very difficult several months for me. My fears and concerns are certainly

different than my husband's - it's his life that is impacted. But because I

love him and have chosen to share my life with him, the diagnosis was

devastating to me in different ways.

So while I certainly support women being against prostate cancer, the pamphlet

did not do much to educate women on issues they will face when their partner is

diagnosed with prostate cancer. Some recommended reading would have also been

of value. As a woman, I highly recommend your website for men and women. It

was very useful to me to read about the experiences of the men that have been

kind enough to share their stories.

Thanks for posting the link

Sandy