Having that conversation to remove your breasts is a hard one, this story explores some of the hidden feelings a woman rarely shares about having a mastectomy.
There's no doubt having both breasts removed to treat or prevent breast cancer is be a harrowing experience, but as five breast cancer survivors share, there are a lot of unexpected shocks along the way.
1. Your sex life suffers
It's hardly surprising that by the time you've been through chemo and breast surgery, sex is often a distant memory.
"When you start to come good, you want to get intimate again," explains breast cancer survivor Louise Turner, 42. "But you have to do things differently."
For many women, there are body image issues.
"I had a double mastectomy and immediate reconstruction and for a long time I never let my husband see my breasts naked," Turner told ninemsn. "I wore a crop-top or T-shirt to bed. There is no sensation left in them, and that's a difficult thing to come to terms with. You also go into early menopause and medications affect your libido, so learning how to be intimate again after that is difficult."
Kathryn Collins, co-director of the Royal Adelaide Hospital's Psychology Department, says couples need to give themselves time to adjust.
"Most times we find it doesn't have an impact on their partner's level of desire or commitment to the relationship –– it's usually a result of a change in the woman's perception of her body and how it is different to how she used to be."
2. It's not like a boob job
Friends and family of breast cancer survivors can say things to try to help, but often it just makes the breast cancer patient feel worse.
"Some people have tried to comfort me by telling me about their boob job and how thrilled they are with their new boobs," says Alison Marks*. "But it's very different when there is no breast tissue left to soften the look and feel. They have no nipples and are really just lumps to make sure my clothes fit okay."
If she had a choice, Marks says she'd happily go back to the body she was born with.
"I would just as soon have my old saggy boobs back, rather than have to get used to the discomfort and foreign feel of these implants," Alison says.
Collins says these well-meaning comments can make breast cancer patients feel frustrated.
"People who choose to have a breast augmentation or breast reduction are making a choice, but people who have a mastectomy and reconstruction as a result of breast cancer often feel it's beyond their control," Collins explains. "Once treatment is finished and cancer is cured, people have this expectation that life goes back to normal. But life doesn't go back to normal straight away – it's a new normal."
3. You worry about your appearance
After surviving breast cancer, many women say their body image concerns feel unwarranted because they should be grateful for being alive. But as Virginia Taylor, 44, discovered, just because you've survived cancer doesn't make you less human.
"We are still women and are entitled to feel anxious and insecure about our new bodies," she says. "Our chests have changed in a very significant way. People assume you are fine and life is back to normal, but for a while I became a sad, lost, insecure soul."
Collins says it's crucial that breast cancer survivors give themselves time to adjust to their new life.
"The reality is that coping with surgery takes a huge physical toll, so it does take some time to build back up to a normal life," she says.
4. The emotional crash comes later
After being diagnosed with breast cancer, Sarah Humphrys, 41, says she went into autopilot to get through treatment and surgery so she could survive and watch her children grow up.
"When that is over, your mind stops racing and you have the chance to really see what happened," she says. "It wasn't until that point that I realised what I had lost. From the outside I have 'normal' breasts, but they are far from normal. I have no nipples, big scars and a heavy, tight chest with no feeling or sensation. I don't think anything or anybody can prepare you for how you feel after a double mastectomy."
At that stage, support also starts to wane.
"Initially everyone crowds around you and drops off food, but over time it is hard for people to maintain that level of support," Collins says. "The level of surveillance from medical professionals also reduces, which can cause a sense of isolation. People worry about having to notice if anything changes because nobody else is there to do it."
5. You dress differently
Adapting to life with a flat chest is equally challenging.
"I have found wearing prosthetics or any type of bra very uncomfortable so I am trying to adapt my wardrobe to my new shape," says Anna Bend* who is yet to have a reconstruction.
Anna has to stretch daily to keep her muscles limber.
"If I don't do morning and evening stretches, my chest really tightens up," she says. "It often feels like I have a big tight rubber band around my chest."
It's easy to feel isolated after breast cancer treatment if you don't have family or friends who have experienced the same thing.
"A lot of women find it useful to talk with women who have already been through a double mastectomy," Collins says.
"The Cancer Council run support groups and some women write blogs about their experiences, which you can read."
If you are a breast cancer patient seeking more information, go to the Breast Cancer Network Australia Breast Reconstruction Group.
*Names have been changed.
Author: Kimberly Gillan
Approving editor: Rory Kinsella.
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