As told to Luan Lawrenson-Woods.
Aalia, 44, lives just outside of Sydney and has no history of breast cancer in her family. She was diagnosed with triple negative breast cancer, and subsequently found out that she carries the BRCA2 gene variant.
“I had quite a large bust and was a size 12. It was an expensive endeavour to buy a bra, and I had made the decision that I was going to buy two brand new bras. The next day when I got home from work and took off my new bra, I felt some pain. I had a feel around and I could feel a very obvious lump. I have always checked my breasts. It hadn’t been there the day before when I’d tried on about 10 to 15 bras, and it just popped up in 24 hours”.
Aalia couldn’t get an appointment for a mammogram for 4 weeks, but says, “Something didn’t sit right with me, so I called my mum, and we went to my local hospital’s ED. It went from them saying it was probably just benign and having a CT, to having an ultrasound and then the doctors went from face-to-face talking to squatting on the floor to talk to me. I was very prepared that they were going to tell me I had cancer, but the shock of finding out it was triple negative was probably the most upsetting and the fact it was already stage three and grade three”.
“I had genetic testing, and it came back with a BRCA2 mutation. It is on my father’s side, which is very male dominant. There’d been a few male relatives who have had prostate cancer and we now know that that is also linked to the BRCA2 gene. It was hiding in amongst the men. It was surprising to me. I was quite convinced that the gene mutation wouldn’t show up”.
“I started treatment about two weeks after my diagnosis. I had IV chemo for 12 weeks and then 3 weeks after I finished that I had a double mastectomy. That was 7 weeks ago, and I’ve been on oral chemo for 5 weeks now. I have three autoimmune diseases, lupus, ankylosing spondylitis and psoriatic arthritis, so I wasn’t a candidate for the DIEP, unfortunately, so we decided to go with implants instead. I’m not opposed to going flat, but I thought I’d rather give implants a try first and see what I think”. Aalia had a skin-sparing mastectomy and currently has expanders in, “I’ll have the expanders swapped out for implants in a few months and have an oophorectomy at the same time”.
“I can’t believe even with the expanders how good they look. I did research and looked at photos and I was prepared to wake up with sort of Frankenstein-looking boobs, but despite being nipple-less, they look like real breasts. It’s pretty amazing, so I can only imagine what the implants are going to look like. I didn’t feel bad when I woke up. I woke up with a fairly decent sized chest. I think that helped to psychologically deal with the mastectomy as well. I was very prepared to be quite upset, but I didn’t feel upset at all. I actually felt relieved. So that was nice as well”.
“I got out of hospital after two days and felt good. Then three days later I ended up back there for seven days with an infection. The expanders were absolute hell probably for a good 3 weeks. I did have a bit of a breakdown. I was, like, ‘I can’t do this. This is awful’. But when I spoke to my surgeon, she told me that I had nerve pain. You’re told you’re going to be completely numb afterwards, but I had the opposite problem and had a high sensitivity. My surgeon put me on some medication and then the nerves settled down. But in one way, I was really happy that I had feeling because that’s another factor that they often don’t discuss with you. They talk about all the surgical stuff and how you feel, but they don’t talk about the emotional loss. Sensation of my breasts is a big part of my sex life, so it was quite a challenge to come to the acceptance that I was going to have no feeling. So, I was very happy that I do have sensation, although I didn’t quite want it turned up to that volume!”.
“I had already made the decision that I would prefer to have a double mastectomy for my own piece of mind, regardless of the results of my genetic testing. I wasn’t particularly attached to my breasts because they were so big and cumbersome and heavy and saggy. So, I didn’t really feel a sense of loss that I suppose some women do. I’m probably between a C and a D at the moment. I was intending to try to go to maybe a double D, but I’m actually quite happy with the size they are now. I just had to look at the positives. You know, the things that I couldn’t do before like have nice looking bras or wear strapless dresses, are now going to be things I can do. I’ve tried to look at the positive, rather than focusing on what I’ve lost”.
“Probably the most challenging thing, and it’s a silly thing, but to catch a glimpse of yourself in the mirror without nipples did mess with my head a bit. I ended up getting some temporary tattoos. That just makes such a difference psychologically when you walk past and catch a glimpse of yourself in the mirror with normal looking nipples, versus not having any. I’ll have the implants done and between 3 and 6 months later they’ll make the nipple, and then once that’s healed 3 months after, I can have cosmetic tattooing done”.
“I’d read some negativity about people having treatment as a public patient, and I want people to know that you can go through the public system and still be amazingly supported and treated really well. My surgeon came in to see me on a Sunday when I was admitted with my infection. It comes down to whether your doctor’s good or not, regardless of whether they’re free or you pay for them”.
“I’ve got a scar that goes underneath the bust and then one very short scar that goes from under up to where the nipple would have been. So, they’re barely very noticeable. And once the implants are in, I think the scar will be under the fold of my skin anyway and I won’t see them. My scars don’t actually bother me at all. I thought they would, and I did a lot of research and bought a whole bunch of oils and silicon tape and everything. I was really concerned about what the scars were going to be like. They’re something I’m almost proud of because it’s a big thing that I did and I survived, and they’re proof of that happening”.
Talk about your family health history. Here are some questions to get you started
Pain can sometimes be a sign of breast cancer. Find out how to check your breasts and know what’s normal for you.
