Never again will I have to have another mammogram. That’s a silver lining, I suppose. For the uninitiated, a mammogram involves your breast tissue being squashed between two plastic plates and X-rayed. It is not the most dignified experience.
My breasts have always been more Hepburn than Monroe, but now after two rounds of pregnancy and breastfeeding they have shrunk a bit, and are more difficult to get into a position where they can be properly squashed and scanned. I don’t know why, but I felt vaguely embarrassed by the measly amount of boobage that had to be manoeuvred into the machine recently.
I had a similar feeling the last time I had an MRI, too: all this fuss when my breasts look totally harmless.
Only they’re not. If they remain a part of my body, they’ll at best make me sick, at worst kill me, so it’s time to say goodbye. This time next month my breasts and I will no longer be together.
I’m having a bilateral mastectomy. It sounds so dramatic, but the saving grace is the word prophylactic. As far as I know, I’m completely healthy. It’s preventative. I’m even having immediate reconstruction, so when I wake up, I’ll have breasts. They’ll just take a while to become mine.
Years ago, when I was first thinking about this time leading up to surgery, the thing I dreaded most was having to explain – or, worse, justify – my decision to people. The thought of that was unbearable.
But one New York Times opinion piece by Angelina Jolie changed everything. She came out and told the world that she was like me and she was making the same decision as me for the same reasons as me.
All of a sudden, the explanation became simple.
“I’m having surgery in March: you know what Angelina Jolie had? Yeah, that.” And that, thank Angie, is enough for most people.
Genetic mutation
We found out about the genetic mutation in the family a couple of years ago. It makes those of us who carry the gene much more likely to develop cancer. A small piece of our BRCA1 gene is missing, which renders it useless.
Your BRCA1 gene, unless you’re like us, prevents your cells from becoming cancerous. My BRCA1 gene doesn’t work. This makes cancer a real possibility for me. In addition to that, the cancer happens younger, it’s more aggressive and more difficult to treat, as a general rule.
In a way, I’m better off that the family history is grim. It makes the decision easier.
Both of my dad’s sisters have had breast cancer twice in their 30s and 40s; his brother has prostate cancer; his mother – my grandmother – has had breast cancer twice, and has survived three other cancers. My brother had lymphoma in his teens (he is fine now).
The family tree on that side tells the story. Aunts, uncles, cousins, particularly the women; you can see the pattern, even without a genetic test. And it continues into my generation.
The news of the mutation came too late for my cousin Carey, who was diagnosed with ovarian cancer at the age of 37. When she was 39 and being treated for a recurrence of the ovarian cancer, she was diagnosed with breast cancer. She’s still fighting, but she will probably never be cancer free.
Mum to two smart and talented boys, she’s an inspiration, but her situation is my nightmare.
Close surveillance
Learning that I have the mutation has meant years of close surveillance. Regular tests and scans for ovarian and breast cancer and, of course, the worst bit that nobody mentions, waiting for results. There were scares. A dodgy looking MRI, an inconclusive ultrasound, another MRI, a mammogram and another ultrasound before getting the all clear a fortnight before my wedding. I was extra-skinny on my wedding day, but that was due to stress rather than dieting.
Having the mutation influenced the timing of children. All things being equal, we probably would have held off a while before ditching the birth control but we knew that sooner was better. Pregnancy brought welcome relief from the screening rigmarole.
My gorgeous boy followed by my gorgeous girl confirmed what I already knew. Now would have to be the time. If there ever is another baby, he or she will have to make do with bottles. That’s not a pop at formula; it’s just the idea that I’ll never breastfeed again makes me sad.
I started to explore the option of surgery. That began with a shock when I realised that it’s not necessarily standard to have a plastic surgeon involved in your breast reconstruction in Ireland. It’s not that breast surgeons aren’t really well trained and capable of achieving great results; I just wanted a specialist involved in my reconstruction.
A plastic surgeon chooses that discipline because they have a talent for making damaged tissue look good again, surely? There has to be a dash of an artist in there. I wanted that.
So I ended up Googling a few surgeons, and, in doing so, I found someone I thought might be the one and emailed her. As it turned out, she specialises in the one-step reconstruction I was looking for and recommended a female breast surgeon who she likes to work with.
I say female deliberately, because it makes a difference. There is something more intuitive about the conversation when both parties have breasts.
She deemed me a good candidate for the kind of reconstruction I was hoping for. It turns out that small breasts work in your favour if you’re ever trying to have them replaced with silicone with as little fuss as possible.
During the operation, the breast surgeon will remove my breast tissue and then the plastic surgeon will replace it with an implant and a sling of strattice – skin with the cells taken out – to support the implant.
The whole thing will be covered with my own skin. I hope to get to keep my nipples, and that will be it.
It’s called the one-step procedure and in having it I will have reduced my lifetime risk of breast cancer from as high as 87 per cent to about 3 per cent. My risk will be lower than that of the general population.
Today, I feel good about the surgery. The main emotion when I wake up will be relief. The knowledge that I would lose my breasts, with or without the involvement of cancer, has been a part of me for ages now. Carey and all the people before her didn’t have the option of preventative surgery. I do. In my family, this is lucky.
Angry and afraid
That’s not to say there haven’t been nights, days, and weeks in which I have cried and cried. Angry about having to make the decision; afraid of the pain; afraid of the things that could go wrong. I’ve been furious at myself for not being able to be thankful and yet irritated at any suggestion that I should be.
I am of course thankful to have the heads up, but I hate the idea that I should celebrate it.
I’m constantly running over the possibilities and things I know about but can’t imagine. I won’t be able to feel my breasts any more. What will that be like? Will it affect my sex life? What if I get an infection that screws everything up? Will I get to keep my nipples? I can’t get my head around that day when I’m going to have to kiss my kids goodbye and go into hospital. My stomach sinks at the thought before I quickly push it away.
This mutation is not something that responds to healthy diet and the usual things that are mentioned in the same breath as cancer prevention. They don’t hurt, but no amount of broccoli is going to prevent my body turning on me.
My rationale is that I can choose to have the surgery while I am cancer free and all options for reconstruction are open to me. Or I can wait for cancer, in which case I still face surgery but also chemotherapy, radiation and all of the complications they bring.
There are no right answers. But I know, despite all my fears and all the unknowns, this is what’s right for me.
For more about breast cancer, see irishtimes.com/thehealthcentre
Hereditary cancers
Most cancers aren’t hereditary. BRCA mutations account for about 10 per cent of breast cancers and 15 per cent of ovarian cancers. There are lots of gene mutations that affect cancer risk, and more are being discovered as research progresses.
The best-known ones are mutations in the BRCA1 and BRCA2 genes. People with these mutations have an elevated risk of breast, ovarian and other cancers.
A female BRCA1 mutation carrier, for example, has a 60-90 per cent chance of developing breast cancer and a 40-60 per cent chance of developing ovarian cancer in her lifetime.
For women who carry a BRCA gene mutation, there are options of preventative surgery and/or close surveillance, while some people are offered medication to reduce risk.
Ireland has an excellent system of genetic counselling and testing. The waits can be long but the system works. In the event of a positive test result, you are referred to the care of a consultant who will talk you through the options. I opted for close surveillance for years before deciding the time was right for surgery.
There are a couple of factors which could indicate that an individual is at high risk and may qualify for genetic counselling: The age your relatives were diagnosed with breast cancer (the younger they are, the more likely there is to be a faulty gene in the family).
Whether anyone had cancer in both breasts.
If there are men in your family who have had breast cancer.
If there is also ovarian cancer in the family.
The affected family members must be close, blood relatives of yours and must all be from the same side of the family.
If you think any of those apply to you, go and see your GP.
Ovarian cancer
Being BRCA1+ I will also need to have my ovaries removed to reduce my risk of ovarian cancer. Ovarian cancer is notoriously difficult to treat. About 300 women are diagnosed each year in Ireland.
It used to be known as the “silent killer”, but research shows that up to 95 per cent of women with ovarian cancer had symptoms and 90 per cent had symptoms with early-stage ovarian cancer.
My cousin Carey Fitzmaurice, who is mentioned in this article, has set up an organisation in an effort to raise awareness of these symptoms.
Symptoms of ovarian cancer include:
Bloating
Pelvic or abdominal pain
Difficulty eating or feeling full quickly
Urinary symptoms (urgency/ frequency)
Women who have these symptoms daily for more than a couple of weeks should see their doctor. Early diagnosis is key with ovarian cancer.
See tealtoes.org, cancer.ie
For more about breast cancer, see irishtimes.com/thehealthcentre
