LAST NOVEMBER, Breast Cancer

Network Australia (BCNA) commissioned the country's largest single study on the impact of breast cancer on women's sexual wellbeing. It was a topic which, up until that 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 information was readily available to them. The swvey, conducted by the University

of Western Sydney, was completed by over 2200 women between the ages of I 8 and 84.
The results

available at bcna.org.au

tell

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,

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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 felt
a 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 difficulties and, in some cases, complete breakdown. Single women with breast cancer reported equally serious struggles with

their sexual wellbeing and most reported a

reluctance to embark on new relationships.

Their concerns included lack ofconfidence and 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.

WOMEN WITH BREAST CANCER ARE GIVEN PLENTY OF INFORMATION ABOUT TH E PHYSICAL SIDE-EFFECTS OF THE DISEASE, BUT WHAT ABOUT THEIR SEXUAL WELLBEING? HERE, BONNIE VAUGHAN SPEAKS TO THREE WOMEN ABOUT HOW THEY LOST _ THEN FOUND - THEIR OWN SEXUAL HEALING.

PHOTOGRAPHY BY PRUE RUSCOE STYLING BY JANE DE TELIGA

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

lump. She tested positive for the BRCA2 gene mutation, which meant that, after six months of chemotherapy, she decided with
her medical team to remove both breasts.

intimacy, what I'd look like, how my breasts would have no feeling and no nipples, how we'd cope." And Phil was beside Kirsty from day one.

about all aspects

ofher life and gave her

strategies that included a printout titled

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 level they 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,

"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. I think that's important. If you don't share it with your partner, it's hard to share it later." Still, Kirsty had her doubts. "My body shape had changed. I had DD breasts before and now, with the reconstruction, they're a C." She wondered if Phil would still find her 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

l0 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. "Your
body and your sex drive and your relationships

it's just skin."

really do matter. As part of diagnosis, the

health professionals need to look at a woman
as a whole within a society - whether she's married, single, has kids or not."

Fortunately, Kirsty found someone to help her. Her breast care nurse had referred her to a psychologist, who talked to Kirsty

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 of information for young women," she recalls.

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BronuJnWe!! 16
"THEY START YOU off at 1 Oam and say, 'So, have any of you got any

"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 with warnings about hair loss and nausea, she was told her sex drive would all but disappear. Yet a funny thing happened. Kirsty's

libido didn't go anywhere. "I thought, 'Why? Is there something wrong with
me? 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

sexuaI probtems?'" That was the extent of the counsetting received by Bronwyn Wetls, a lawyer who was diagnosed with breast cancer five years ago. She was in a support group with women she didn't know. "l'm sitting there 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 her
Lymph nodes.

under my arm," she says. "So I've got very big scars." She was with her partner, David, at the time, but after breaking-up with him three years ago, she's been faced with exptaining those scars to potential new partners she meets -

with no

The cancer was very aggressive,

so the decision to have her breast

removed was made with her medicaI team. "l had chemo for four months, Herceptin for 12, the mastectomy, ptus an extensive node ctearance

hel.p at al,L. "There seem to be guidetines for everything e[se, [ike vagina[ dryness and 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 was catm. I was [ike, 'This is something need to be doing to save my Life.' " The greater impact was the massive shift she had to make in her body image. "l've always been very comfortabte with my body and to suddenty go from that to, 'l've got a major physical defect that I'm going to have to taLk to peopte about in
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BE,FORE, EVERYONE ELSE WAS STRESSED, BUT I WAS CALM. I V/AS LIKE, .THIS IS SOMETHING I NEED TO BE DOING TO SAVE, MY LIF'E'.''

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After having a breast removed, Bronwyn Wells says she had to rethink her body image. From being comfortabte in her own skin, she now has to be up-front with potentiat partners about her
changed appearance.

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advance'. lt came as a shock to me that I had to start thinking about it." Bronwyn, who has had reconstruction surgery, devised her own strategies. "l've been trying to work out how not to freak out the other person and preserve my dignity," she says. It didn't go so wet[ with the first guy she was intimate with, whom she'd totd about the surgery in advance. When we got together for the first time and I took off my bra, he was tike, '0h f***l' lt was a shock for him," she reca[[s. "l said, 'Are you okay with it?' And he said, 'Yeah.'That made me realise I had to tatk to peopte about it up-front." Her next re[ationship was longdistance. "We were going to get together in ThaiLand for the f irst time," she recatts. "lt took me five goes to have the conversation with him on the phone. And when I had it, I was devastated. He said, 'lt's att right.' But after I hung up, I sobbed. Att the upset associated with having breast cancer - it at[ came out. " Meanwhite, this new partner had Googted "mastectomy". "The poor guy saw some horrific images," says Bronwyn, "so he was expecting something reatty bad." When they finatty met up, she kept her bra on in the bedroom for five 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 was golng 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, where it's hard enough to get a date, let atone with this going on." Yet she insists her breast cancer and mastectomy haven't been deatbreakers 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 ic conversation to get up the courage to have. And it's not discussed."
32 PINK ribbon magazine

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Sazanne lVlalle
SUZANNE FEELS STRONGLY about the
lack of support for women's sexual wellbeing

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Before her depressive illness,

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Suzanne and John, 70, had been married

for

I 8 years.

after breast cancer. "It is intimately linked to our physical and emotional wellbeing,
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she says, they had enjoyed an active sex

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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, which had 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

life. After four years on anti-depressants, she'd been looking forward to getting her libido back, but the cancer diagnosis only drove 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 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.
had broached the subject

a a a a a a a a a a a a a a a a

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 vivid memory of being in the bath and saying

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goodbye to my breast," she says.

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"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

Over the two years it took Suzanne to overcome the fatigue that came with recovery 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

if it was all

over. Would he want to touch me again?"

A cacophony ofquestions ran through with the scariest one ofall: was she going to die?
Suzanne's mind that night, competing

ofit - at least not as we had knoun it before," she says. "We had to find different ways of expressing our intimacy with each otheq with cuddles, kisses and memories of how great it used to be, and gratitude that we still loved each other."
Suzanne is adamant that counselling

A post-operative infection left Suzanne seriously ill for five weeks and re-admitted
to hospital for more surgery and antibiotics.

for sexual wellbeing should be part ofthe recovery 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

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

being kind and loving, but I had held him at a distance in terms of physical intimacy. I didn't want him to touch me."

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 has faced many chatlenges,

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from breast cancer

and depression to mastectomy, but believes that being abte to talk about it atl. with her husband has hetped

them maintain their sexuaI intimacy.