My name is Jessica and I am 49. I have no ovaries and my breasts and nipples have been removed and reconstructed. They look great but are cold and feel a bit foreign. However I am happy that I have done everything I can to prevent cancer and leaving my sons without a mother. This is my story....
A few years ago the Genetics Service asked my mother’s cousin to contact all family members because they saw a strong pattern of breast, ovarian, and prostate cancer in our family. After my mother tested positive, I got tested without hesitation. I was positive (BRCA1). I decided immediately to have my ovaries out, and that operation went very smoothly. Just 2 days off work and another 3 working from home. I did some research and decided that the best way to avoid hot flushes was a combination of evening primrose oil and cutting out stimulants (coffee, alcohol, sugar) which are said to send your body into flushes. It worked for me. I have not had any issues other than a stubborn few kilos that appeared a year later.
My next challenge was my breasts. I received conflicting advice – my male doctor said ‘don't’, as did my best friend whose mother had just died of breast cancer! Several people said ‘don't mutilate your body’. But for me the greater fear was losing my hair should I ever get cancer. I could hide breasts but the prospect of wigs horrified me. Fortunately a female GP, and the specialist who removed my ovaries, reminded me that my breasts were still a huge risk. I felt empowered.
However the decision was huge and I kept putting it off. I was really scared of the operation and recovery time. Recently single I also feared of what future partners might think.
The turning point in my decision was the Gift Of Knowledge conference. I met amazing women who had had their breasts removed and rebuilt. I got to see (and touch!) them and consider what procedures would be right for me. I also got to hear two surgeons speak, and I chose one of these. I opted for a one-stage operation that meant I would have breasts as soon as possible, and the least time off work. Luckily my insurer partially funded my operation, though it has still cost me a lot. I am sure my public hospital experience (free) would had also have been fine, but would have taken longer.
I decided on implants in the pectoral muscle because I would rather lose chest strength than give up abdominals and risk hernias and weaker stomach muscles. A DIEP was never an option for me because I did not want to take that long off work.
My operation went well and I woke up with A cups, which was a surprise as I was expecting to be flat. The first week was painful but okay but then I suffered an awful infection in one breast. My surgeon thought I might lose it, but after several rounds of antibiotics and time at a women’s health retreat in Piha I felt much better. Giving myself the space to recover was so important. My new breasts look better than I expected, and I look 25 again. However they are cold to the touch, because no blood vessels flow through them, and they don’t move at all. I can't do push ups etc at the gym. As my surgeon said “you either sacrifice your pectoral or abdominal muscle”. I now envy at women whose breasts ‘move’ when they walk like mine used to but at least I have good equal shapes and am happy to get changed without feeling self-conscious.
I decided to have my nipples removed to lessen my risk, and the bonus was that my surgeon was able to give me a ‘lift’ at the same time. I thought about having nipple ‘shapes’ formed but decided it was not necessary, and my new tattoos look fantastic – very 3D. The tattooing was such an empowering experience I am looking at training as a nipple/scar tattooist.
Fortunately my partner, who was very new when I had the operation, has been wonderful. Like me, he feels my hair is a bigger marker of my femininity than my breasts. No one has to know that my breasts are not real except him. That said I am very open about them – I even shared them with attendees at a Gift Of Knowledge coffee group! What a sight – two of us flashing our boobs in the loos – hilarious!
I will encourage my sons to be tested when they are a bit older, because, as I learned at the GOK conference, they can have their embryos tested through Government funded IVF. It is very reassuring to know that we could stop this gene.
My mother is currently battling Peritoneal cancer. The prognosis is not great long term but she hopes to extend her life for a few years through diet. She tried Chemo but she found it horrendous. Unfortunately she delayed having her Ovaries out (she tested positive 3 years ago) – she now wishes she had not because it is likely related to her Peritoneal cancer.
I feel that I have done all that I can to protect myself. I am trying to eat more healthily, and especially cut down on sugar because my reading says cancer loves people with a sweet tooth. My goal is to be there for my grandchildren.
A positive outcome is that I live for today a lot more, and am seriously considering a career change that I did not think I would have the courage to explore. BRCA has made me brave.
Overall my story was not too traumatic due to being 47 when I tested positive, having a well paid job and medical insurance, and being a half glass full sort of person. I know I am fortunate. I really feel for younger women who have to make decisions a lot earlier than I did, and women without the means to have the choices I did.