Five years ago, I was trying to decide whether to have preventive bilateral mastectomy. Here’s the first entry in the journal I was to write for eighteen months.
27 June 2006
I am contemplating having my breasts removed. Elective surgery. Still an op little known here in the UK… at Guys Hospital four or five women have the operation each year apparently, though the frequency is increasing. Most of those who decide on elective surgery are known to carry the BRCA 1 or 2 gene that gives the bearer an 85% chance of developing breast cancer.
There are only four women in my immediate family: my mother, her sister, me and my first cousin. Three of us have so far developed breast cancer. They have tested my mother’s DNA and her sister’s, mine and my cousin’s for BRCA 1 and 2 and have not yet found alterations in those genes. Beyond that we don’t know. My breast specialist tells me that the genetics experts have now isolated other genes implicated in breast cancer, perhaps our family cancer is one of these. But they cannot test for them yet. So I’m left with the close monitoring option or the elective surgery option.
It is a strange decision to be trying to make. Whether to just carry on, knowing that my risk of developing breast cancer could be as high as 85%, or to go ahead and have elective mastectomies as a healthy person, largely preventing the likelihood of getting the cancer.
I had my 6-monthly check-up last Thursday. The usual pattern: clinical exam, then ultrasound, then follow-up talk. In June it’s this combination, in December I have a mammogram too. The ultrasound helps them build up a good picture of my particularly dense breast tissue, which is anyway prone to developing cysts. These scan results can be compared with the mammograms and my breast anatomy profiles examined for changes year on year. There are dozens of images of my breasts now, after more than twenty years of monitoring. All more or less healthy so far. I’m lucky. Without the ultrasound imaging, I would already have had to have many needle biopsies to check out various lumps.
The difference seeing the specialist this time was that I knew I wanted to open up the subject of elective surgery. It was the first time I’ve been able to confront it. The last few years I’ve observed my own anxiety levels increase gradually towards the 6-monthly check, then the immense relief of the ‘clean bill of health’, then the tucking away the whole subject for 5 months, followed by the final weeks of climbing up the anxiety scale again. Repeat, repeat, repeat. After the checks, the somewhat false feeling of confidence – that I’m fine for another 6 months. It’s like being given time back, or a bonus. But in reality I could develop a tumour at any moment in that 6-month cycle.
So after my last appointment in December, I determined to talk to my cousin about elective surgery. Then to raise it with the medics. My cousin discussed it with her oncologist to get the ball rolling, and she reported back to me a few weeks ago. Now I’ve talked to my gynaecologist and to the breast specialist. I’m in a new stage of the process. I know more and I’ve thought more. I’m on my way to making a decision. Or decisions really, since there are several to be made. Several kinds. One’s intuitive. Another’s practical. Another’s reasoned. Yet another’s emotional.