I’m a cancer survivor, I’m happy, but I do miss my nipples

I miss my nipples. I miss the lovely tingly feeling when I brush fingers across them. I miss how they contract when it gets cold. Or when I’m aroused. I don’t miss my breasts nearly as much. They were a nuisance. Heavy pendulous things covered by a bra that gave me a backache. In case you were wondering, my back is so much better now, thank you.

Yes, I’ve had a double mastectomy. And before you’re thinking that I’m going through gender re-assignment, let me assure you that’s not the case. Although I do look much more masculine now. Last year my life was saved by the fabulous women doctors and nurses at the Royal North Shore Hospital in Sydney.

Dr Fiona Chatteur survived cancer.

I am one of the 18,000 women who are diagnosed with breast cancer in this country every year. My only risk factor was that I had a child after the age of 40. I’d had a total of three ultrasounds and a mammogram before I had a biopsy on the lump. Why did I persist? My nipple had started to tingle.

There’s a lot of things they don’t tell you about breast cancer. If you’re diligent, as I am, and have regular mammograms you expect to have the cancer spotted before it spreads. But mammograms aren’t a panacea, especially if you have dense and calcified breasts. The surgeon couldn’t see the cancer on the film and ordered an MRI scan. The only thing that absolutely confirms the presence or lack of cancer is a biopsy. My mantra is now “biopsy your lump”.

Diagnosis is a complete shock. It all feels unreal. You have cancer. You need surgery. You need chemotherapy and radiotherapy. My head was reeling. The surgeon suggested a lumpectomy with a breast reduction in the non-offending breast. So I did that.

The surgery was quite horrific, but the upside was that I rather liked my reduced boobs. A comfortable C-cup. Nice! What they don’t tell you is that breast reduction surgery results in scarring and a lack of sensation in the nipples. There’s also fat necrosis. This is where the surgery causes a mass or lump of fat or dead tissue at the surgery site. This may disappear with time, but also may be permanent. Then the solution is more surgery.

My surgeon had bad news. The margins weren’t clear. Although the cancer had been removed, the precancerous tissue at the edges remained. It was going to come back. My cancerous breast had to come off. “Make it a double” I said.

“Make it a double” I said.

The surgeon assumed I would have breast reconstruction afterwards. I consulted the (male!) plastic surgeon, who informed me that because my treatment would involve radiotherapy, breast implants were not an option. Reconstruction would involve cutting tissue from my (healthy) abdomen and reconstructing the breasts from that. Leaving a scar from hip to hip and scars around my navel. It is a 12-hour operation. I was indecisive. Torn.

I had the time during chemotherapy to decide. Chemotherapy involves losing your hair, fingernails and toenails. I developed an allergic reaction to the drugs, so I had a rash on my face. I lost sensation in my fingers and feet. I was eternally exhausted. I wouldn’t wish it on my worst enemy.

After that I’d had it. No reconstruction. Twenty per cent of women make the same choice. As soon as possible after chemotherapy they whisked me in for my double mastectomy. My surgeon now considers me an incomplete project.

Radiotherapy wasn’t so bad. It involves visiting the hospital daily for five or so weeks. After treatment finished I developed second degree radiation burns on my chest. Wasn’t expecting that.

Now I’m a “cancer survivor”. My hair has started to grow back. My fingernails also. What this journey has taught me is that each day is a gift. I have developed joie de vivre. I appreciate the time that I have. Happy to be breathing. Happy to be alive. Doesn’t get better than that.

Dr Fiona Chatteur is a research fellow with Torrens University in Sydney, where she also teaches communication design. She spent six years with the BBC in the UK as a producer and 12 years with ABC Australia. Last year her life was saved by doctors at the Royal North Shore Hospital in Sydney.

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