Genetic Risk

My Story


Breast cancer first touched my life when I was 5 years old and my much loved maternal Aunt died. I had eavesdropped on some adult conversations and realised she was unwell, but this shocked me. It was only much later I learnt the cause of her death – the ‘c’ word was not talked about openly in my family. At intervals during my childhood, I can remember my Mum anxiously opening an envelope and then happily announcing that “her mammogram was clear”. It was only after Mum became too old for the screening program that she discovered a lump in her breast. It was confirmed as cancer and the clinicians did their best to reassure her that treatment and pain relief had moved on considerably since her sister’s death 20+ years earlier. Although Mum was worried, her treatment (mastectomy, radiotherapy and Tamoxifen) worked and she died recently of old age - 16+ years later. In the meantime, her other sister was also diagnosed with breast cancer.

With this history, I was concerned there could be a genetic problem. Although the doctors felt that it was probably ‘bad luck’, I was offered screening earlier than usual, to start at age 45. At age 43 I found a small lump in my breast and although it did not show up on mammogram, was ‘benign’ to feel i.e. very mobile and smooth and a fine needle aspiration labelled it “suspicious but probably benign”, I decided to be on the safe side and have it removed. The lump was a tiny (5 mm) grade one cancer, very hormone positive and (I was told) very easy to treat. It did, however, open up the can of worms which was my family history. I was referred to a geneticist who had the opinion that my cancer was likely to be genetic. The usual mutations (BRCA1/2) were not found and it was suggested that the mutation was one ‘yet to be discovered’. My mother also dropped the bombshell that my Aunt had an emergency hysterectomy before she died and it raised the possibility she may have had ovarian cancer too.

There are no easy answers to all this, but I have a wonderful husband and 2 beautiful little girls. Above all else I wanted to do all I could to remain around for them. Eight months after my cancer diagnosis, I had a full hysterectomy/oophorectomy to deal with any ovarian risk. At the beginning of 2009, after much research, I decided to go on the list to have a bi-lateral mastectomy and reduce my risk of another primary cancer as much as possible. My ‘diary’ of this surgery follows:

So there I was…..

… preparing to go to Parents’ Evening when the phone rang - decided to answer it just before we rushed out the door. Breast care nurse – what surgery was I waiting for, could I possibly fit into a cancellation on Wednesday, i.e. in 5 days’ time! I’d been on the list since the beginning of the year and, well, waiting lists don’t often get shorter, do they! I’m not one to let an opportunity go by, so a quick chat with DH, a deep breath and a “yes, okay then!” I had 5 clear days to organise myself (and more to the point, my family) and one of those days was spent at the hospital seeing my consultant and having my pre-op assessment.

I suddenly had to make several ‘final’ choices. Did I want to keep my nipples? At first I said yes, but over the weekend read up on all the pros and cons so carefully researched and recorded on this site. Changed my mind and got consent form altered. As a skinny size 8, my two surgery options had been lat dorsi (x2) with implants, or fixed volume implants on their own. I decided against the lat dorsi, the long recovery/operation time put me off and also the fact that if it didn’t work I’d have lost part of my back muscle for no gain. My surgeon then decided to use Becker implants, he wanted to avoid ‘stressing’ the skin (particularly the side where I’d previously had radiotherapy) and felt that gentle expansion was the way to go. The implants are part saline and part silicone. The saline section is expanded through a port and when the correct size is reached, the ports are removed under local anaesthetic.

By Wednesday morning I was as ready as I’d ever be, with my bag packed full of non-wired bras (wasn’t sure what size/shape I’d be), vest tops and button-front PJ’s. Took the girls to school and then DH took me to the hospital at 11 am. I was the only person on the surgeon’s list and went to theatre at 1.45pm. As I was having both sides done, I needed a canula in my foot, so was ‘put under’ using a mask and the canula put in whilst I was asleep – much less painful!! Back on the ward early evening to see my lovely family waiting for me. They organised all my stuff, put a straw in my drink, fed me toast etc. I’d been given so much pain relief I hardly felt a thing, but as it wore off I was stiff and sore. I hadn’t a clue how to sit up in bed but shuffled up somehow. At this point the nurse looked at me in despair and handed me the control to my wonderful electric bed. That of course made life much easier. The ‘elephant’ which sits on your chest post-op seemed to have missed me out, but apparently an accomplished boxer showed up instead. I was very bruised (guess who forgot the arnica) and my left side really did look like Tinky Winky from the Teletubbies. The first night was hard, but the nurses were wonderful (I’d had a few less than positive experiences after previous surgery so this was a pleasant surprise), gave me pain relief, anti-sickness etc as needed. I used a commode in the night but was able to walk to the loo by morning as I’d discarded the drip and oxygen mask. Had drains both sides and my hospital does not send you home with drains in, so the plan was for me to go home Monday/Tuesday. BCN really wanted to avoid any seromas as they are hard to drain with implants in. However, by Saturday morning there was very little in the drains, I was now on oral, rather than IV meds so I got the fantastic news I could go home after just 3 days!

The next Friday I went back to see my consultant to check the wounds (doing great) and the bit I was dreading, getting the histology… I am in the unusual position of having a very ‘low risk’ cancer first time around, the main risk was through another more aggressive primary tumour, rather than secondary spread from the first one. On the L side everything was normal, but on the R side (the ‘bad’ side) there was a small focal area of ductal hyperplasia which can be a marker for breast cancer. I was told I’d ‘done the right thing’ by having my op – I knew that anyway but it was nice to hear it. As I’m not BRCA1/2 I’d had moments of doubting my decision to have the op. based on family history alone.

Two weeks post op, I feel so well and ‘normal’, energy levels are increasing. The implants are really taking shape. My sports bra is my 24 hour companion and will be for a while yet! So, this chapter of my life has come to a close. I am now very low risk for both secondaries and another primary. After 3 years of this hanging over me (and of course, my family), I am very, very thankful. Reading back through the posts of the ladies who had their risk-reducing surgery 2+ years ago was so helpful. What a wealth of information this site is – so grateful to all who’ve shared their experiences and contributed to it. I will be asking stupid questions about expansion (!) and of course want to help anyone else in any way I can.

What next? Well, I doubt that I’ll be skipping off into the sunset to live happily ever after. That only happens in the movies! However, although there are no guarantees, I feel confident I have done all I can to ensure the chance of this disease claiming my life is now very low.