Written me

I’m two and a half years on from my diagnosis of invasive lobular breast cancer. While I’m no longer in ‘active’ cancer treatment, I’m still receiving treatment: hormone therapy and reconstructive surgery.

When I first connected with women who’d had breast cancer I was surprised by how long treatment can go on for, and how many had undergone multiple surgeries. I’m now preparing for my third.

In April 2018 I had a skin-sparing mastectomy with an expander implant to create a ‘pocket’ between my skin and chest wall. In May 2019 tissue was taken from my abdomen and transplanted into this space to create a new breast, or foob (fat boob) as it’s known in the #cancercommunity.

This procedure is a DIEP flap reconstruction and involves a hip to hip incision and relocation of the belly button as well as the incisions to the breast. I was in surgery for 5 hours and in hospital for 6 nights.

The night before surgery I commented to a nurse that I felt scared, like I was back in treatment. “No”, they said, “this is beautification!”.

I get that people try to make nice - I truly do - but it’s disappointing that a health professional sees DIEP as cosmetic (with the inference my pre-DIEP breast was ugly). As Breast Cancer Network Australia says: “Breast reconstruction following a mastectomy … is considered a medical procedure, not cosmetic surgery".

Many women who’ve had breast reconstruction are upset when people call their surgery a ‘boob job’. Cosmetic comparisons are made for DIEP too and can be equally upsetting. I’ve been blocked by a plastic surgeon and their clinic for asking them to consider re-phrasing Instagram marketing posts about women who have “scored a bonus tummy tuck” with their DIEP.

The cosmetic connotations of these terms are often associated with beauty and therefore not being medically indicated. My next surgery will involve matching the volume of my foob with my un-affected boob and reconstructing a nipple. For me that’s hugely important: not to be more beautiful but to be more me.

I appreciate it can be tricky to know what to say and that this is very much my perspective. That’s why it’s important for us to share our stories, for them to be written.

[Originally a guest Instagram post for @ohitscancer as part of National Breast Cancer Foundation's #gopink fundraising campaign]