LAST NOVEMBER, Breast Cancer

Network Australia (BCNA) commissionedthe country's largest single study on the

impact of breast cancer on women's sexual

wellbeing. It was a topic which, up untilthat point, had been practically taboo.

Through BCNA's previous research and

surveys, women had made it known that,

although they felt passionately about the

subject, little or no support or informationwas readily available to them.

The swvey, conducted by the Universityof Western Sydney, was completed by over

2200 women between the ages of I 8 and 84.

The results - available at bcna.org.au - tell a

sobering tale. More than 80 per cent reported

that breast cancer had negatively affected their

sexual wellbeing, with more than two-thirds

reporting a significant change. Their interest

in sex, their feelings ofbeing desirable and

frequency of intercourse had all diminished.

The top five issues that affected women

most were fatigue, vaginal dryness, hot flushes,

negative self-image and weight gain, caused

by arange offactors including chemotherapy

side-effects, surgery, treatment-induced

menopause and the emotional fallout that

came with their illness. Many women felta lack of support from their partners, too.

The survey also revealed that partners

and spouses were suffering as well. Anxiety,fear, loss of libido and changes in the

dynamic all led to relationship difficultiesand, in some cases, complete breakdown.

Single women with breast cancer

reported equally serious struggles withtheir sexual wellbeing and most reported a

reluctance to embark on new relationships.

Their concerns included lack ofconfidenceand fear ofrejection.

Only 35 per cent ofthose surveyed had

spoken to anybody about it. Most women

said they were too embarrassed to broach

the subject with their health professionals.

These results make it crystal clear that

women need more information on this

complex issue and that support must be part

of breast cancer treatment and management.

Here, three women who took part in the

survey share their breast cancer experience,

the effect it's had on their sexual wellbeing

and how each ofthem manages to cope.

28 PINK ribbon magazine

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WOMEN WITH BREAST CANCER AREGIVEN PLENTY OF INFORMATIONABOUT TH E PHYSICAL SIDE-EFFECTSOF THE DISEASE, BUT WHAT ABOUTTHEIR SEXUAL WELLBEING? HERE,BONNIE VAUGHAN SPEAKS TOTHREE WOMEN ABOUT HOW THEYLOST _ THEN FOUND - THEIR OWNSEXUAL HEALING.

PHOTOGRAPHY BY PRUE RUSCOE STYLING BY JANE DE TELIGA

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Kirsty Muir underwenta double mastectomyafter being diagnosed

with breast cancer at 28.She says there was a

lack of information andsupport about the effects

on her sexuality andretationship, but she was

hetped by tatking toa psychotogist.

31KIRSTY WAS 28 when she tucked herhands under her arms one chilly eveningat home, three years ago, and discovered a

lump. She tested positive for the BRCA2gene mutation, which meant that, after sixmonths of chemotherapy, she decided withher medical team to remove both breasts.

After meeting with an oncologist and a

surgeon, she and her partner offive years,

Phil, were sent to see an IVF consultant to

discuss harvesting embryos, in case they

wanted children later on. Seemingly ovemight,

their relationship was fast-tracked to a levelthey might not have reached in years.

"For an unmarried young couple to be

facing that was huge;' says Kirsty, now 31

and a junior primary teacher. "We were

thinking, 'Do we do this? Are you going

to stand by me through this?"'Despite the handouts, support groups,

information sessions, books, websites and

forums, Kirsty still hadn't found the answers

to these or the other questions she had about

how her diagnosis and treatment would affect

her relationship. "There was such a lack ofinformation for young women," she recalls.

"It irritated me that I couldn't speak to anyone

my age or read a book by someone who

wasn't married and who'd had their children."

As for her health care professionals,

Kirsty says, "Nobody talked about how

things were going with Phil and me, or our

sexuality or our closeness. They just talked

about the side effects of chemo." Along withwarnings about hair loss and nausea, she was

told her sex drive would all but disappear.

Yet a funny thing happened. Kirsty'slibido didn't go anywhere. "I thought,'Why? Is there something wrong withme? Does it mean the chemo's not working?

Is it going to stop?' "It didn't stop - not even on her first

night home after her double mastectomy.

"It was on!" she says, laughing. "l was a

little stiffand sore, so it was a bit more

mechanical, like, 'Right, how are we

logistically going to do this?"'What helped Kirsty through her breast

cancer ordeal was a sense of humour and

open communication with Phil. "We talked

a lot about it. How it would affect our

30 PINK ribbon magazine

a a a a aa a a aa a a a a a a a a a a a a a a a a a a a a a a a a a aa a a a a a a a a a a a a a a a a a aaa

intimacy, what I'd look like, how my breasts

would have no feeling and no nipples, howwe'd cope."

And Phil was beside Kirsty from day one.

"He was right there when the bandages came

off" she says. "He saw all the draining tubes

and the stitches. He could see it healing. Ithink that's important. If you don't share itwith your partner, it's hard to share it later."

Still, Kirsty had her doubts. "My bodyshape had changed. I had DD breasts beforeand now, with the reconstruction, they're

a C." She wondered if Phil would still findher as attractive. "It's a part ofyour body

and it's really sensual. And now it's not an

area that would stimulate either person -it's just skin."

Fortunately, Kirsty found someone to

help her. Her breast care nurse had referred

her to a psychologist, who talked to Kirsty

"THEY START YOU off at 1 Oam and

say, 'So, have any of you got any

sexuaI probtems?'" That was theextent of the counsetting receivedby Bronwyn Wetls, a lawyer whowas diagnosed with breast cancerfive years ago.

She was in a support group withwomen she didn't know. "l'm sittingthere going, 'l'm not going to lell you'.It was the onty conversation I had

and it was inappropriate."Bronwyn's cancer, found eight

months after a routine mammogram,was grade 3, HER2-positive and

hormone receptor positive, and

was beginning to spread to herLymph nodes.

The cancer was very aggressive,so the decision to have her breastremoved was made with her medicaIteam. "l had chemo for four months,Herceptin for 12, the mastectomy,ptus an extensive node ctearance

about all aspects ofher life and gave herstrategies that included a printout titledl0 Ways To Openly Communicate lVith Your

Partner About Sex. "lt had questions and

phrases for opening up a conversation,"Kirsty recalls. "lt's amazing how much

they helped."

If Kirsty hadn't elected to see the

psychologist, she says she wouldn't have had

anybody to talk to about how to handle the

sexual issues that came up for her. She

thinks all breast cancer patients should have

access to the counselling she received.

"There are hundreds ofwomen out there

in the same position as me," she says. "Yourbody and your sex drive and your relationships

really do matter. As part of diagnosis, the

health professionals need to look at a womanas a whole within a society - whether she's

married, single, has kids or not."

under my arm," she says. "So I've gotvery big scars."

She was with her partner, David,

at the time, but after breaking-upwith him three years ago, she's been

faced with exptaining those scars topotential new partners she meets -with no hel.p at al,L.

"There seem to be guidetines foreverything e[se, [ike vagina[ drynessand Loss of tibido," she says, "but

there are no guidetines for this."Bronwyn says the mastectomy

didn't worry her. "The night before,everyone else was stressed, but I wascatm. I was [ike, 'This is something I

need to be doing to save my Life.' "

The greater impact was themassive shift she had to make inher body image. "l've always beenvery comfortabte with my body and

to suddenty go from that to, 'l've gota major physical defect that I'm going

to have to taLk to peopte about in

BronuJnWe!! 16

..THE NIGHT BE,FORE,EVERYONE ELSE WASSTRESSED, BUT I WAS

CALM. I V/AS LIKE,.THIS IS SOMETHING

I NEED TO BE DOINGTO SAVE, MY LIF'E'.''

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After having a breastremoved, BronwynWells says she hadto rethink her bodyimage. From beingcomfortabte in herown skin, she nowhas to be up-frontwith potentiatpartners about herchanged appearance.

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advance'. lt came as a shock to me thatI had to start thinking about it."

Bronwyn, who has had reconstructionsurgery, devised her own strategies."l've been trying to work out how not

to freak out the other person andpreserve my dignity," she says.

It didn't go so wet[ with the firstguy she was intimate with, whom she'd

totd about the surgery in advance.

When we got together for the firsttime and I took off my bra, he wastike, '0h f***l' lt was a shock for him,"she reca[[s. "l said, 'Are you okay withit?' And he said, 'Yeah.'That made

me realise I had to tatk to peopte

about it up-front."Her next re[ationship was long-

distance. "We were going to gettogether in ThaiLand for the f irst time,"she recatts. "lt took me five goes tohave the conversation with him on

the phone. And when I had it, I wasdevastated. He said, 'lt's att right.'But after I hung up, I sobbed. Att theupset associated with having breastcancer - it at[ came out. "

Meanwhite, this new partnerhad Googted "mastectomy". "The

poor guy saw some horrific images,"says Bronwyn, "so he was expectingsomething reatty bad."

When they finatty met up, she

kept her bra on in the bedroom forfive days. "Then I said, 'Wett, actuatly,this is what I took tike.' And he said,'That's not half as bad as I thought it wasgolng to be! lt Looks absotutety fine!"'

Bronwyn can [augh about it now,

but it wasn't funny at the time - and

it isn't now she is singte again. "l'm a

46-year-otd woman in Sydney, whereit's hard enough to get a date, let atone

with this going on."Yet she insists her breast cancer

and mastectomy haven't been deat-breakers in her retationships. "Either

I've been tucky with the men I've gone

out with or I've deatt with it wett mysetf."She wishes she'd had some

support, though. "l can't tetl you

how awful it is to say to somebody,'l've had cancer. I lost my breast. I

had a reconstruction.' lt's a horrif icconversation to get up the courageto have. And it's not discussed."

32 PINK ribbon magazine

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SUZANNE FEELS STRONGLY about the

lack of support for women's sexual wellbeing

after breast cancer. "It is intimately linkedto our physical and emotional wellbeing,

but it is rarely acknowledge(" she says.

"It's the elephant in the room."

During a routine mammogram nearly a

decade ago, Suzanne, a 62-year-old retired

dentist, was diagnosed with a high-grade,

non-invasive ductal carcinoma in situ.

Thanks to a difficult menopause, whichhad led to treatment for depression over

the past four years, her libido had already

taken a battering.

Yet Suzanne wanted the cancer

gone and electing to have a mastectomy

was a no-brainer. "It was peppered

throughout the breast," she says, "so

by the time they'd excised all the bits

and pieces, I'd have been left with some

sad little tissue. I figured I'd think about

reconstruction afterwards."

What Suzanne hadn't expected was the

sense of grief that overwhelmed her the

night before surgery. "I have the most vividmemory of being in the bath and saying

goodbye to my breast," she says.

"I could still see my daughter, who's

24 now, as a baby, caressing it with her

little hand as she fed. I remembered my

breasts' first budding, showing cleavage,

the pleaswe of my relationship with my

husband, John, and wondered if it was allover. Would he want to touch me again?"

A cacophony ofquestions ran through

Suzanne's mind that night, competing withthe scariest one ofall: was she going to die?

A post-operative infection left Suzanne

seriously ill for five weeks and re-admitted

to hospital for more surgery and antibiotics.

"My chest wall and the surgical site were

swollen, numb and a ghastly purple," she

says. "Never had I felt so ill and ugly''Up until that point, she hadn't let John

see her scar. "I felt maimed and so terriblyalone and scared," she says. "John was

being kind and loving, but I had held himat a distance in terms of physical intimacy.

I didn't want him to touch me."

Suzanne and John, 70, had been married

for I 8 years. Before her depressive illness,

she says, they had enjoyed an active sex

life. After four years on anti-depressants,

she'd been looking forward to getting her

libido back, but the cancer diagnosis onlydrove it further aground. 'And I missed

sex," she says. "I missed the excitement

and the intimacy so acutely."

The day before she returned to

hospital, Suzanne stood in the shower

and wept - and then something wonderful

happened. "John quietly stripped down,got in the shower and just held me," she

says. "This was a major breakthrough

in our relationship."

None of Suzanne's health professionals

had broached the subject ofthe emotional

and sexual fallout that comes with a cancer

diagnosis. Fortunately, she and John have

always been able to talk things through.

"He's an amazing man - there's a wisdom

to him," she says, with a fond smile.

Over the two years it took Suzanne

to overcome the fatigue that came withrecovery and treatment, she learned to

ask John for what she really needed -to be held and told he still found her

attractive. "But sex was no longer a

part ofit - at least not as we had knounit before," she says.

"We had to find different ways ofexpressing our intimacy with each otheq

with cuddles, kisses and memories of howgreat it used to be, and gratitude that we

still loved each other."

Suzanne is adamant that counselling

for sexual wellbeing should be part oftherecovery program for women ofany age.

"It should notjust be assumed that because

you're a woman in her 50s or 60s that your

sexuality isn't important to you," she says.

"There needs to be a growing awareness

among health professionals so that they

refer people appropriately for treatment.

"I may not be swinging from the

chandeliers as I was once was, but I love

being told I still look as sexy as I did 25

years ago, when we first got together."

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Suzanne Mutlen hasfaced many chatlenges,

from breast cancerand depression to

mastectomy, butbelieves that being abte

to talk about it atl. withher husband has hetped

them maintain theirsexuaI intimacy.