My name is Amanda and I am an anomaly!
Four years ago I had my preventative double mastectomy with tissue expander reconstruction. You might thing prevention? Brca 1 or 2 carrier? No, this is where it becomes difficult.
11 years ago my mother was the 4th of 5 women, all sisters, to be diagnosed with breast cancer. They had caught it quickly due to her screening – mammograms and physical examinations due to her sisters having fought cancer. Up until this point two of her sisters (my aunts) were screened for the Brca mutations and tested negative. Therefore in the words of her surgeon at the time, it was merely ‘bad luck’. This remained the case until a new surgeon took over the clinic and sent the family for genetic background checks. They could only trace back as far as my great grandfather as he came to the UK from Lithuania and there are limited records. There it was found that not only had the 4 sisters been through cancer, they were joined by an uncle, aunts and cousins all on their fathers side of their family tree.
So there lies my dilemma. The surgeon concluded that due to the recurrence of cancer in our family ours was one of the worst cases they’d seen without a Brca mutation being present and something had to be done. One consultant tried to put a percentage on my risk at around 97%.
97%? Surely it’s a no brainer right??
In 2013 I was at the breast clinic for my routine breast check up and mammogram. As I sat in the waiting room in my gown the usual thoughts swam through my mind.
How many women had sat in that same spot, looking at the same leaflets and posters around them moments before going into the room to be told they’d found ‘something’ on their x-ray?
As I stood there manipulating my body into the clamps of the mammogram machine (which isn’t as bad as it sounds, I’m not a piece of wood manhandled by a joiner, the nurse was quite gentle and we managed with minor discomfort) I thought at the mere age of 31 how many more of these would I attend before they said those words to me? How would I cope?
then as the clamps released and I was able to go about my business as normal the thoughts dissipated for another year, or so I thought.
four to six weeks later the mail arrived with the familiar blue faded stamp on the front. My letter to say all is well for another year I presumed, not so!
Dear Mrs Stewart………
blah blah blah
we have found a shadow on your right breast and would therefore like to conduct a further investigation…..another mammogram…………please report to x-ray on……..
They’d found something, what? my baby girl was only just turned 2, my boy was starting school…….
I knew age wasn’t a factor, my aunt was 32 when she was diagnosed, cancer didn’t care for circumstances or loved ones.
I went along to the mammogram and as I left I was told to wait for the radiographer analyzing the x-ray, as they came out and told me that all was well and that they couldn’t see what they’d found on the last one, I felt a huge wave of relief glide over me, but knew it wasn’t the end.
Could I go through that again? Could I endure the waiting,the diagnosis? The treatment?
I had made my mind up and with that experience tucked in the box in my mind where I’d use it later for strength I approached the consultant to request preventative action.
In 2015 I underwent the most life changing event of my life and removed two healthy breasts without fully knowing if I was definitely a carrier of whatever gene is present in my family.
Two weeks after the elation of being ‘free’ I was hit with the blow that the pocket housing my left tissue expander was infected and it must be removed and left to heal for three months. The decision was made to remove it on the 27th august – my daughters 4th birthday. The amount of sadness I felt was immeasurable, but I found the strength that I was not a cancer patient and I would get through this.
Four years down the line and true to form I am at the other side, there was light at the end of the tunnel and I found peace in the knowledge that my risk has been cut to 5%.
Over the past four years I have documented my journey on my own social media through the hashtag #mastectomymyway
I had a bye bye boobies celebration night out with friends, before and after photoshoots and documented my expander reconstruction in photographs. Having tried reached out to support groups who help Brca carriers, being rejected and feeling I didn’t fit in due to not being a carrier and even been called a fraud for using the hashtag previvor I knew opinion had to change. There are many women out there who are like me too, who feel alone at the worst time so I wanted to be there for them. I have friends from all over the world who have seen my story and look for advice or just someone to chat to. I have loved sharing my experience, tips and photots showing strength, vulnerability and scars because that’s who I am and that’s the real rawness people need to see to relate and that’s what I found in LoveRose.
During those four years I have featured in magazines, radio, T.V. including This Morning and most of the feedback has been positive and I’ve built up a wee community of breast cancer survivors and previvors and try to bring them the best support and knowledge.
Recently I came across Carolines interview on STV and knew instantly I wanted to share her story with my friends.
Caroline is a pioneer in post surgery lingerie, she has been to war on the front line with us all and knows exactly what surgery involves and the feelings attached.
I am privileged to be part of the LoveRose community and excited for what the future holds for LoveRose I hope you will be too.
Please join us and support the future of confident survivors, previvors or foobfriends, be whatever we want to be!