Christine's story - Personal stories • Breast Cancer Foundation NZ

Christine's story

Christine's story is part of a series looking at the many and varied experiences of breast reconstruction and the decisions behind a woman's choice to have reconstruction or not.

Christine was diagnosed with breast cancer at 45 and had delayed reconstruction. She shares her journey of implant and DIEP reconstruction...

I was 44 when I found a lump that felt like a pea at the top of my breast. I live in a smaller rural community so the DHB organises mammograms through the breast screening bus. When I turned 45 I rang the bus for an appointment but when I mentioned the lump I was told to go to my doctor to get a diagnosis first. At the doctor’s, a nurse felt the lump and called my GP, who referred me to the breast clinic for a mammogram and biopsy. At the breast clinic they also found a second lump. I was diagnosed with grade 1 invasive ductal carcinoma and DCIS. My surgeon had recommended a lumpectomy but after they found the second lump, I was told I would have to have a mastectomy. Being diagnosed hit me really hard, I didn’t know anything about breast cancer. I was a single parent too, and my daughter was nine at the time.

My surgeon persuaded me away from immediate reconstruction. She told me it would be a long, hard recovery and that I could change my mind and have reconstruction later. I didn’t know anything and I didn’t have any support, so I said ‘just chop it off, I’ll be fine’. After I had my mastectomy I had a prosthesis. It was really bad. My prosthesis got hot and sweaty. When I went to the beach, I had nowhere to put it in my wetsuit so I used to put it in the glovebox. I didn’t want to swim in pools, as if I didn’t have the right swimming costume I couldn’t wear it. Every time I bent over my prosthesis would fall down and you could see the gap with my chest wall. There were so many clothes I couldn’t wear. My prosthesis broke down and leaked so I had to get a replacement.

After a year with the prosthesis, I changed my mind and decided to go for breast reconstruction. I applied and kept being denied because my BMI was too high. At this time, I had seen a news article about a about a lot of slim-shaped women being denied reconstruction because apparently their BMI was too high. They went on TV to draw attention to this. Eventually I got to see a surgeon who said I was a good candidate for reconstruction. He gave me some pamphlets, told me to go home at read them and then let him know which one I chose. I had no advice from him. When I made a follow-up appointment, I found out that he’d retired and my notes were gone; I wasn’t in the system and they’d never heard of me.

I had to apply again to see another surgeon, and a few years later I was accepted for reconstruction. I was told that implant reconstruction would be perfect. I had a new style of expander put in, which could be left in permanently once it had been inflated. It would be a C-cup, down from my D-cup, with a reduction to the left breast. It was a year from that appointment to the time of my surgery. The operation went well, though I was in a lot of pain coming home.

I went back for an appointment to inflate the expander a month later, which was a bit sore but okay. I saw a different surgeon for my appointment, and she asked if I’d had a proper discussion about implant reconstruction and inflation before my surgery. I had another inflation but the surgeon said it wasn’t working. Instead of it expanding and then drooping down like it was supposed to, my expander had moved higher and higher until it was sitting high on my chest, almost on my collarbone. I was booked in for another surgery to have it fixed and was told it should be done by the new year. Come January, I hadn’t heard anything so I went back to the hospital to sort it out only to find my surgeon had left. Again, my notes had been lost and I wasn’t in the system. I was ringing people all the time to chase them up about fixing my expander. For two years I had to walk around with my expander sitting high on my shoulder and the other drooping. I stayed the same size and I wore the same clothes, and it didn’t look good, but at least I was able to hide it in my work uniform. It was awful.

Eventually, I met with my final surgeon. She told me that my previous surgeon hadn’t made the pocket under the muscle large enough for the implant to fit into, which is why it travelled up when saline was injected into it. We could see what was happening; I commented that it didn’t look right and my surgeon agreed. My surgeon was baffled – they thought I had capsular contraction. I was told that I should never have had the surgery because of my size, age and body shape. She said that I would never have had good outcomes and that I should instead have had DIEP flap reconstruction.

I had surgery for a DIEP flap reconstruction a year ago and it’s been wonderful. When I saw it after surgery, straight away I went ‘that looks good’. It’s been the best thing; I look like a woman and under clothes and with a bra on, you couldn’t tell the difference. I went out and bought all new clothes and everyone says I look wonderful. It’s no surprise as I look and feel better – and the bonus tummy tuck was wonderful!

Going into the surgery I had no expectations as I’d been let down so many times – anything would have been better than my expander. The DIEP flap is so much better. It’s my own skin so it’s warm-ish to the touch although there’s nerve damage so I can’t quite feel it. It’s part of my body, so there’s nothing foreign in me – my expander always moved and I could feel it. The scarring at the start was pretty bad. I knew there would be a scar from hip to hip, but the scar on my breast is pretty jagged. It also got infected so there’s a bit of scar tissue there. I have some fullness on the top of my breast but my surgeon explained that it’s best to leave it alone. If they take it out, it might leave a dip and make the breast look misshapen. I’m also going to have nipple reconstruction in a few weeks.

I would tell other women that if you feel a lump, go and do something about it – don’t wait until it’s too late. I would also say not delay reconstruction, if you can help it. I was told that I could get it done whenever I wanted, but I had to fight the system a lot. I’m very, very strong-minded but it’s been hard. I wish I had had a bit more support although I’m part of a Facebook group and talking to others on there helps.

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