Genetic Risk

Breast and Ovarian surgery and an early menopause

By jw

I am a BRCA2 mutation-carrier. My sister had it, as did my Dad.

I went to see my GP as our family seemed to have a lot of cancers in it. My father was an only child so there was no one else of his generation to provide evidence either way. His Dad had died in the war so hadn't reached his late thirties. But my Dad's mum, auntie, and grandma had all died of breast or "unknown" cancers. My doctor said it didn't sound like a significant history, but thankfully sent me to the genetics service anyway.

At my first appointment possible risks and outcomes were explained to me. They decided I had a significant family history, especially in view of my sister's terminal diagnosis at 38. NHS mammograms and screening didn't begin until 40, so I was too young for that – unless I was confirmed as a gene carrier. I wanted to know for sure, and my sister was willing to give blood samples, so we began the long process of testing my sister, then my Dad, then me.

My sister's results first of all came back "no mutation found", after about six months. Which was a relief. However, another six months later, we got more results, that she was in fact a BRCA2 mutation carrier. Based on this they tested my Dad, and found he was too.

Then it was my turn. I had a number of visits to the genetics clinic, and it was very much up to me whether I had the test. I was encouraged to consider not only the relief of receiving a negative result, but also what it would mean to receive a positive result. I thought I had considered all this, and even pessimistically prepared myself for bad news when the result came. But I hadn’t.

When I got the positive BRCA2 result I felt as if they had told me I had got cancer. I was 38, the age at which my sister's cancer was terminal, I felt that history was repeating itself. I fell apart. The Genetics Team had referred me to the Family Clinic at my local hospital, but I would have to wait for an appointment. At that point I didn't want to wait – I wanted to see someone straight away, to be told I didn't have cancer, and to be told it would be alright. After a week of anxiety, worrying, and crying I contacted my genetics nurse. She was wonderful, saw me straight away, and suggested lots of places to go for help and support (it had never occurred to me that cancer charities could help people like me as I hadn't got cancer). From then on I felt more able to cope.

I got the appointment through for the breast surgeon fairly quickly. There I met the surgeon, met my Breast Care Nurse, and got answers to all my questions. I was left with a lot of information, and decisions to make. Should I have surgery, if so what sort? Should I just go for screening? Should I do nothing at all? How would I feel if I got cancer after deciding against surgery? I was petrified of surgery and hospitals, but the surgeon and Nurse were so kind, respectful, and "normal", that after six months of considering it, I decided surgery was the only way for me to lose my permanent dread of cancer. I had a private MRI scan (not available on the NHS) to check whether I had any suspicious areas, but this came back fine.

My appointment with the gynae surgeon took longer, but eventually it came. This surgeon was not as compassionate, he believed ovarian screening was not effective, and suggested operating as soon as possible. Luckily that was all I wanted from him, so it suited me. To my surprise he suggested performing the keyhole operation at the same time as my planned mastectomy and reconstruction. As I was petrified that a stay in hospital might be so scary that I wouldn't set foot in one again, this suited me very well. I was in surgery for six hours - the gynae went first, then two breast teams moved in.

I had bilateral mastectomies and immediate reconstruction with expanding implants, and nipple tattooing. I am keeping the implants, but having the expansion ports removed. I found the whole process a lot easier than I thought it would be, I have even been back for surgery for a "tidy up"!

I also had both my ovaries and fallopian tubes removed, aged 39. It is worth remembering that there is no way to remove all the "ovarian" tissue from a woman's body (some remains within the abdomen after the operation), so all risk is not removed. The ovary operation was by keyhole, and was no trouble at all. Four small scars on my abdomen. Afterwards my stitches got irritated by clothes rubbing them, but nothing more than that. However, this meant I was put into a "sudden" menopause.

Apparently women have enough oestrogen in their body to last a week or so, so I got no menopausal symptoms straight away. Then slowly the hot flushes began. I had thought that I could cope with a bit of "getting warm" now and again – what could be so hard in that?!

But they are like nothing I have experienced before – sudden onset of feeling boiling hot accompanied by tingling at the back of my neck. In themselves they were bearable – but being woken up to 5 times a night and having to get out of bed to cool down meant getting up for work got harder and harder.

I also found my memory wasn't what it was – sometimes recalling a friend's name seemed impossible. My GP had given me AdCalD straight after the operation - for post-menopausal women not having HRT I think this is the usual treatment to prevent bone loss.

However, after 3 months I went back for help with the hot flushes. I am now on Livial, also known as Tibolone, a steroid-based combined HRT. It is relatively new and is supposed to be the most appropriate for high risk women who haven't had cancer, as it contains no actual oestrogen. My doctor has been advised that I should be on this for a maximum of 5 years. It adds to the risk of breast cancer, but at one of the lowest rates of any HRT.

I seem to have had few side effects from the HRT – a little extra hair on my chin (gggrrr!), a small amount of weight gain (but both can happen during the menopause anyway). And a bonus is of course no periods what-so-ever.

Tibolone is also used for women who suffer reduced libido and vaginal dryness, so has the additional side-effect of reducing those menopausal symptoms too.

I didn't try herbal remedies, as I have found out from cancer patients that their oncologists don't like them having concentrated herbal powders and phyto-oestrogens, as the risk from these on breast cancer is unknown.

I don't regret my decision to have the mastectomies, or my ovaries out. I have no children and never planned to have any. I do worry what effects an early menopause may have on me – there are theories about increased risk of heart disease, dementia, and loss of fluid in joints; and certainties about osteoporosis. I have learned throughout all this experience, that nothing is black or white – there can be no complete absence of risk, it is about getting the best quality of life with an acceptable level of risk. But in comparison to an early death from breast or ovarian cancer, I have decided to take my chances with surgery and HRT.