My name is Melissa and this is my story.
I still remember the day in September I got the call at work, it was my mum and the first thing she said to me is “Lissy they think I have breast cancer, I have fainted can you come get me”.
My mum was 46 and this was the day that forever changed my life – I was only 23.
One and a half years later my beautiful, strong and caring mum was gone. The swiftness and cruelness of mum’s cancer made me always question if there was more to the cause of her cancer then what we knew? Our family had a checkered past with cancer it was very prevalent in both sides of the family but mum was the first one to have breast cancer. The uncertainty around what took mum so quickly was forever in the back of my mind, each check up at the breast clinic when they found another lump made me anxious and fearful.
I remember the time I had a breast lump and I was only 34 and they told me then and there because of the odd shape it was 50/50 that it was going to be cancer. I was lucky it wasn’t but the knot in my pit of my stomach told me something wasn’t right that I kept developing all of these lumps.
Fast forward three years and two beautiful baby boys later I lost a lot of weight post the birth of my second child (and the death of my dad)… 15 kilos in 16 weeks. I went to the Doctor in a panic saying that I have never been able to lose this much weight something is wrong with me! I was lucky to have a thorough GP and a colonoscopy was ordered straight away. I had the colonoscopy and 40+ polyps were found which is an extreme amount for a 37 year old. The gastroenterologist who reviewed my colonoscopy results knew about genetic mutations which caused bowel polyps, he suggested that the type and number of polyps I had was reflective of a PTen gene mutation and that genetic testing should be done immediately.
I was still breast feeding my little baby when I found out that I had a confirmed PTen gene mutation. This mutation means that I grow cancerous and non-cancerous growths and it puts me at an 85% lifetime breast cancer risk and various other cancer risks which included uterine, kidney and bowel cancer. I was shocked at the positive results but finally felt that I had the answer to the uncertainty I had always felt about my own mortality (and my mums!) and could proactively manage my situation. I was also able to provide this information to my sister and she found out she carries the mutation as well. As mum’s cancer was over 10 years ago we weren’t able to find out if she was the carrier of the gene, all we can assume is that she did and this is why her cancer was so aggressive! People often don’t realise that there are several different genetic mutations outside of BRCA that cause high risk breast cancer. Sometime I wish I had the BRCA mutation as it is easier to explain and more known than my PTen!
The decision to do the mastectomy/reconstruction surgery was the simple part, I knew to save my life I had no choice but to do this (as I had several near misses with lumps and bumps). I also have two small beautiful boys at home that count on me every day (and a husband as well) who are my whole world and the thought of not being there for them was my biggest fear! People tell you all the time it’s such a brave thing to do – I didn’t see it as brave I just saw it as something I had to do. On the other hand mentally preparing to do the surgeries was an emotional rollercoaster! I spent 6 months with a counsellor who specialised in health issues to help me prepare mentally for the road ahead. It also helped me to deal with the diagnosis of having a gene mutation and trying to manage the fear and anxiety around the surgery and life in general.
I have recently just completed the hysterectomy six weeks ago. The hysterectomy was harder to do then the mastectomy – I had no prior issues with my uterus and really didn’t want to lose it (or the fallopian tubes) and being only 40 I was really worried about complications that came from this surgery such as early menopause and broken parts down there! I had felt that I had lost my boobs I didn’t want to put at risk my vagina too! There was also a sadness knowing that there was definitely no more babies! While in my mind I knew that there was no more babies my heart felt a sadness about that door permanently being closed.
I have been very lucky through my journey to have family, friends, work colleagues who have supported me. I have also found the Pink Hope forum to be an amazing support network. I can post crazy thoughts and fears there that I can’t say aloud to anyone else and know that people understand what I am going through. It is also an information sharing network and I have learned so much through other people’s journeys which has helped to inform me about my decisions.
I now face each day with a bit more certainty and less fear because I have knowledge and can be my own health advocate.
I hope that by sharing my story it will raise awareness and that sometimes that little voice in your head that says “hey all this cancer in the family is not right” might be worth listening to and speaking with a genetic counsellor to unpack the risk a little more.