Making the best of the rest

Di Websdale-Morrissey plots the path back to physical and psychological fitness for women affected by breast cancer surgery.

Women’s breasts are not simply external signs of sexuality or sources of infant nourishment. Nor are they captured or dignified by the media which uses improbable cleavages to sell products or ideas. Breasts are more. We watched them form in adolescence, swell in pregnancy, perhaps feed our babies and gracefully settle into a softer middle age and beyond. We’ve performed breast self examinations and had them squeezed by mammogram plates, so when one such breast challenge reveals a lump, our reaction
can be complicated by the weight of all that history.

Major questions crowd into the doctor’s surgery with you when a breast cancer diagnosis drops from a clear blue sky. The first are probably about survival. What is my prognosis? How can I rid myself of this abomination? What are my treatment options? Lumpectomy or full mastectomy? Chemotherapy, radiotherapy? Will I survive? Once these issues are covered, other, much less easily
answerable questions intrude. What will I look like afterwards? How will my partner react to my changed body? How will I?
About 40 per cent of the 13,000 Australian women diagnosed with breast cancer each year will undergo full or partial mastectomy. Some women cannot imagine life without a breast so might consider reconstructive surgery, although fewer than 12 per cent of women having mastectomies currently opt for reconstruction. There is probably no single reason for this low uptake.

Some, especially those having a lumpectomy, will simply not feel the need; too many will not be told about their options. For others, reconstruction is sidelined while the threat is dealt with and afterwards, further surgery is unthinkable. Whatever their reason, these women can use external prostheses, breast-shaped forms that clip inside the bra, to ensure symmetry. The prostheses are weighted and shaped to mimic the real breast so clothes hang normally. Soft prostheses are worn initially, with permanent models fitted after six weeks. Permanent prostheses cost between $150 and $500 and are replaced every two years.
External prostheses are not enough for some women, however, as Isabelle demonstrates.

“After my lumpectomy, I was told the margins were not clear, that I needed a full mastectomy. I rang the plastic surgeon immediately to discuss my options and we decided I would have silicone implants. He contacted my breast surgeon and instructed him on what he would need, so I had a ‘skin sparing’ mastectomy – one that leaves enough skin for later reconstruction. From day one, I knew I would end up with a breast and that I’d be okay.” There would be a second skin-sparing mastectomy, surgical insertion of skin expanders to prepare for the implants and then the implant operation itself, but Isabelle regrets none of it.

“As I walked out of the hospital for the final time on my 59th birthday, I knew my cancer journey was at an end. Life will never be the same again, but I am delighted with my breasts. I feel very blessed and happy.” It wasn’t until Angela travelled to Melbourne for a second opinion that she was told about her reconstruction choices. “In the country, there are no specialist breast clinics or breast surgeons and general surgeons can’t perform the reconstructions,” she says. “I had the mastectomy and,
because I needed radiotherapy, had a temporary saline implant inserted. But I wanted my own body tissue used so,
after my treatment, I returned for a flap.”

Flap reconstructions consist of tissue – fat, muscle and skin – taken from the abdomen, back or buttocks, and sewn onto the chest in a breast-shaped mound. Angela’s surgery took five or six hours – considerably longer than implant surgery.
“There was significant post-operative discomfort and I took a couple of months to recover,” says Angela, “but it was worth
it.” Later, Angela underwent nipple reconstruction, which takes about an hour, is pain free and does not require an anaesthetic.
The nipple was then tattooed to match her natural one. But these stories speak about compensating for physical loss. How
does a woman return to peak physical and psychological fitness?

Physical recovery
Gentle exercise in the days immediately after surgery reduces post-operative stiffness and swelling. Initially, postoperative
exercise is aimed at pain relief and prevention of scar tissue, and focuses on breathing, posture and flexibility. As the days pass, strength-building exercises are added. Most women will experience a generalised post-mastectomy fatigue, but doctors
and psychologists alike recommend continued activity such as yoga, walking, swimming, Pilates and jogging, even after the
post-operative phase. The YWCA’s free Encore program takes recovering women through a specifically designed exercise
regime. Eventually the exercise will no longer be about recovery, but about reaffirming a commitment to fitness and to life.

Psychological recovery
Cancer knocks the stuffing out of you and a mastectomy seems to rob you of even more. If you face such a journey, be gentle
on yourself. It’s a road you’ve probably never walked before, so you might surprise yourself with unexpected feelings. Bev
says she felt damaged and distressed. “I was all over the place emotionally – scared, angry, sad, hopeful, all in the space of
five minutes. I was dealing with fears of every colour: fear of a relapse; fear I wouldn’t get my life back; fear that my husband of 35 years would walk away. One of my friends had been through it, too, and she virtually carried me for the first months.” Relationships are an important part of any healing, so let your friends and family circle the wagons, and give strength and reassurance. They’re probably dealing with their own fears so it’s good to involve them.

Most people are reassured when they feel useful, so it can be like a gift to them if you accept their help. Women with partners have major potential support, but some partners will not know what to say or do to help. However loving their relationship, many women will still fear rejection, might still fear that intimacy will be the first casualty of their new bodies. Some are so convinced that rejection is inevitable, they initiate it themselves by pushing their bewildered partner away. The significant other will often be terrified of losing their wife or girlfriend or of simply saying the wrong thing. Otherwise healthy relationships can flounder on such communication blockages. We all know what leads our partners to more open discussion – perhaps time, a relaxing getaway or a bottle of red; perhaps, as Len and Shirley discovered, fish. They were both 58 when Shirley was diagnosed with cancer.

“I was so bloody scared, but I just couldn’t talk to her about it, although I could see she was hurting,” says Len. “Seven weeks
after her op, we went fishing. We’ve always loved fishing. We were sitting quietly at the river, and we just started talking. Not
just about the cancer, but about why we’ve stayed together this long. We haven’t talked like that for years. That night we held
each other for hours and we’ve never looked back.” Sometimes just gentle holding, or simply lying together stroking each other, is the first step back into physical intimacy. Both partners need time to get used to the physical changes so both should work to keep the verbal and physical lines of communication open.

Some couples report a better sex life afterwards, because they’ve stopped taking it for granted. Women diagnosed with breast cancer can access information, counselling, breast care nurses and a range of services through organisations such as Breast Cancer Network Australia (BCNA). Such organisations understand and guide women along the potentially confusing road. “Many breast cancer associations do great work supporting vital research, but BCNA supports the women,” says Isabelle. “They help you understand your journey and your options, and foster a sense of connectedness with a world of other women who have faced, or are facing, your reality.”

Inspired by their work, Angela undertook scientific and advocacy training through BCNA and advocates for all women affected by breast cancer, although she particularly works to address the paucity of information and services in rural areas. In recent years, several high-profile Australian women have bravely shared their stories of breast cancer, surgery and recovery. In so doing they signalled to the world that breast loss does not necessarily mean loss of sexuality, dignity or femininity. Instead they, Isabelle, Angela, Bev and Shirley (and Len) demonstrate that it is not what has been lost that lies at the heart of successful post-mastectomy life, but how one makes the most of what is still there.

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