A fair exchange

Earlier this week I had an operation, so just now I’m feeling fab. Physically I have a bit of pain and what the medical world terms ‘discomfort’, but emotionally I’m mainly happy. Happy that it went well, that it’s over, that the surgeon and his crew said that everything they saw inside me (and the couple of bits they removed) looked in good shape.

Relief!

It’s the weeks and days before an operation that I find hardest. This is when I repeatedly run through my decision-making – have I been thinking things through clearly? Does it really make sense for me to have a bilateral salpingectomy (fallopian tube removal) now and to delay the oopherectomy (ovary removal) until I’m in my late 40s? I look again at the mortality/ survival statistics for BRCA1 women. Here’s what they tell me : without preventative surgery BRCA1 women have an up to 60% chance of developing ovarian cancer by 70 years, with diagnoses beginning to ramp up when women are in their 40s. I am 43.

These stats chime quite well with my family history, which includes at least one ovarian cancer death (possibly as many as three). The known ovarian cancer death was my grandmother’s, Barbara. She probably developed the cancer in her early 50s, but that’s just a guess. Then, there are my paternal aunts who would likely have developed ovarian cancer if breast cancer hadn’t got them first.

It was clear I should do something, but the official advice to remove my ovaries and fallopian tubes – and, in so doing, embrace surgical menopause – didn’t seem right. I couldn’t bring myself to do it. Maybe I’ve read too many quality of life studies in which women who undergo surgical menopause report significant problems. Perhaps I’ve been conned into believing that functioning ovaries really are the secret to female youth and happiness.

Whatever the truth is, I finally forced myself to stop procrastinating and chose a third way. Instead of doing nothing, I submitted to an operation that everyone agrees has reduced my risk of developing ovarian cancer by a significant but unquantifiable degree. When I’m closer to 50, I’ll go under once again to remove my ovaries and cut my risk even further.

Will this work? I don’t know. Neither do the doctors. It’s a gamble. If I develop ovarian cancer within the next few years I’ll have lost the bet. But I think the odds are in my favour. (I’m one of those people who never gambles on the horses or football, but I will gamble on what truly matters, like my life.)

So this week I exchanged my fallopian tubes for a greater chance of a long life. I want to be clear: I did not want to have to do this. I wanted to keep my fallopian tubes. But I understand that I have to give up parts of my body in exchange for the chance to live beyond 65/66. Very few women on the side of my family affected by BRCA1 mutations in the two generations above me have made it beyond 65/66. In fact, only one made it beyond that age – and she did so after having survived two different cancer diagnoses. Clearly, she is tough as nails. And my role model.

Almost two years ago I began by giving up my breasts (and a muscle from each of my inner thighs to make new ones). Now my fallopian tubes. A few years from now it’ll be my ovaries. The way I see it, gradually, I’m giving up all the removeable high-risk tissue. It is hard to do this. On the one hand I am so, so happy the operation went well, but that doesn’t mean that I didn’t lie in bed the first night after this latest operation and cry.

Is it a fair exchange? Body parts for a full lifespan? I think it is. That’s why I do it.

3 thoughts about Angelina Jolie

Several people have asked me what I think of Angelina Jolie’s article in the New York Times about being BRCA1 positive and her decision to have a prophylactic (ie. preventive) double mastectomy.

My first reaction was as a journalist as much as a fellow BRCA1 mutant. I thought: ‘Poor Angelina Jolie, she had no choice but to go public’. Perhaps I’m wrong, but I assume that one of the reasons Jolie wrote the article was to control how her health is discussed because she knew she couldn’t stop the news from leaking out in some way.

It’s wonderful that Jolie was able to maintain her privacy after her genetic test result and during the time when she was coming to a decision about whether to have preventive surgery. And there were no leaks during the surgery phase. But she must have known there was no hope of maintaining her privacy forever.

So my first feeling when I read Jolie’s article was sadness for her, sadness that she had to tell the whole world about her genetic status and the state of her breasts.

I realise that this sadness might be misplaced. Maybe Jolie wanted nothing more than to use her own body as an educational tool for raising awareness about cancer genetics. The urge to explain and to share can be very strong after a diagnosis and during medical treatment – and we know from Jolie’s work with the UN that she isn’t afraid of tackling tough issues, including Islamophobia and sexual violence against women.

After I received my BRCA test result last year I definitely wanted to talk about it. I needed to, even. It was important to be able to explain to friends and family what BRCA1 positive status means and what my risk-reducing options were. Looking back, I’m certain that explaining it all to others helped me understand it fully myself. Talking and writing is part of the thinking process, after all.

But I didn’t want to tell everyone. I remember that in the months before my big op, there were people I absolutely did not want to know about my genetic vulnerability and my plan to have a double mastectomy and immediate reconstruction. I’m grateful that I was able to tell people gradually – widening the circle of those ‘in the know’ over time. And I make no apologies for keeping some people ‘in the dark’ for a while. Talking about death and breasts – not to mention both together! – is a challenge, and I found some people more relaxed and open to hearing about it than others.

It’s not coincidental that I started this blog only after I’d had the big op and I think it’s noteworthy that Jolie didn’t publish her article until after she was well into the process of breast cancer risk reduction. Everyone’s need for privacy is different, but some amount of privacy is important to us all, even if you’re a global celeb.

My second reaction to Jolie’s article was relief that I’m not celebrity skinny. Jolie has always been thin and, who knows, this may have helped to reduce her breast cancer risk. (It is clear that low body fat concentrations generally help to reduce ‘normal’ women’s risk of breast and many other cancers, and it may also help BRCA positive women.) But being very slim means Jolie couldn’t take advantage of the have the latest surgical option, that of using her own body’s tissue to reconstruct her breasts.

In her article, Jolie refers to the process of replacing breast tissue with implants, but I chose another medical procedure, the one that is most highly recommended in most cases by the UK National Health Service (NHS). I chose to allow plastic surgeons to take tissue from another part of my body and use it to replace the breast tissue that had been removed.

The NHS’ official view is that this option – breast reconstruction using a patient’s own tissue – is the best option for many women and, indeed, it uses this procedure when treating many non-BRCA women who have breast cancer (ie. ‘normal’ women with breast cancer). It was clear to me that I could choose implants if I wanted to, but I was told that ‘own tissue’ reconstruction is the current ‘gold standard’ treatment.

Since I was healthy and cancer-free in the run-up to the operation and had enough ‘material’ for the plastic surgeons to work with, I opted for the ‘gold standard’. No doubt in a few years’ time, there will be some new procedure that is even better.

There are several advantages – and some disadvantages – to using a woman’s own tissue to reconstruct her breasts. One advantage is that the reconstructed breasts will ‘last’ forever, whereas implants should be replaced about every 15 years. When I was making my choice I imagined myself 85 years old (because I’m still hoping I’ll live to a ripe old age!) and having to change my breast implants. At that age, I hope to be thinking about cataract operations and the challenges of clipping ever-thicker toe nails, not my sagging chest.

My third reaction to Jolie’s news is that she has done something very important with her article – she has helped to educate the whole world about the unusually-high risk of breast cancer that a small number of women face. And I am grateful to her.

Someone asked me if I thought Jolie’s article will make it easier for people to understand why I have taken the drastic action I have. The more I think about it, the more my answer to that question is a big yes. Even after I had my mastectomy and reconstruction several people asked me if what I had done had really been medically necessary. They just couldn’t believe that I had weighed up the options and chosen something that the doctors genuinely recommended. I can see why – it does seem drastic, barbaric even. And given how barbaric, it can make some people resist accepting the truth…which is that for women like me – and Jolie – such drastic action will help us have a real chance at a full lifespan.

I found it difficult to explain that ‘Yes, the doctors really do think this is what I need. Yes, I really am at such an extreme risk of breast cancer that this is recommended by mainstream, conventional medicine. Until I had this operation I really was statistically much, much more likely to develop breast cancer before I’m 60, than to not develop it.’

Exasperated, I would whisper to myself wryly: ‘As if the NHS would provide a 15-strong medical team for an 11-hour operation if it wasn’t necessary!’

Now that Angelina Jolie has explained her ‘medical choice’, perhaps I won’t have to justify mine so often.

A universal experience

I don’t know anyone else in my particular situation, no one with the same genetic status and who has had the same medical intervention.*

I know such women exist, but we’re rare, and I haven’t had time yet to find any others. Even in my own family, the situations facing my BRCA1-positive female relations are all different to mine and the medical advice we receive is surprisingly well tailored. We are treated as the individuals we are.

With my circumstances so unique, I could easily be feeling set me apart and different from everyone around me. But that hasn’t been how I’ve been feeling at all. Rather than feel the odd one out, I have felt a greater sense of shared humanity with those around me, rather than less.

The old man with the stick who sat down carefully next to me on the bus on Friday evening… little did he know how well I understood the need to place one’s posterior down with care, how I’d done just that a couple of minutes earlier. I felt we were two secret peas in a pod as the bus headed up the hill. Differences of race, age and gender meant nothing in that moment.

No one’s body goes on forever, performing perfectly. We all break down. And we all face the emotional agony of accepting our bodily failures.

As I’ve recovered from the unusual and gruelling operation I had two months ago, I have been surprised to discover that the emotions I’ve been feeling are very similar to what I previously felt before the operation, when all I had to contend with were minor signs of physical ageing. I’ve simply had to learn to experience these emotions washing over me more often and with greater ferocity.

As various parts of my body have been healing I have had to look in the mirror. A lot. For a few weeks it seemed that things were changing every few hours, Each time I looked I had to go through an emotionally-charged process of seeing my body as it was, not as I hoped it would be, and then trying to accept this new reality.

The temptation not to look was strong, at times, as was the desire to bargain with myself, to say ‘this can be fixed’ or ‘that won’t stay that way’.

In some cases, I have been right to predict improvement  – my body is in flux and there have been a few pleasing developments amongst the more depressing ones. Most of the good news has involved discoveries about my physical fitness  – I can still walk miles, hurrah! – whereas the depressing news has usually been about my appearance.

Over the last eight weeks I have become accustomed to running through a routine that most of us experiences as we age. I have stood in the mirror and I have panicked. “That wasn’t there before! Or if it was, it didn’t look like that.”

Then, I have calmed myself down and have said all sorts of things that we usually say to ourselves when we’ve discovered a little sag or bulge or red spidery vein or a line in a place where we were sure there was no line before. “It’s not so bad, chin up. If I stand up straight and do a few press-ups every morning, who will notice? There’s a cream I can buy that will hide that. With good lighting I look ok. It’s the sparkle in the eyes that count, not the wrinkles.”

Early on, I had to reassure myself occasionally that I was not in the midst of an out-of-control spurt of accelerated ageing. More recently, I’ve had a mild sense of moving backward in time. I’m no longer the old woman I was when I left hospital, gingerly walking baby steps and holding onto someone’s arm. I’m my own age again, just a little out of breath when I go upstairs and always on the lookout for a soft chair to sit on in cafes.

I have – and will continue – to experience that feeling of disappointment, followed by stoic acceptance, that becomes familiar to us all as we age. Realising that this psychological process I’m go through on an almost daily basis is, in fact, a close cousin to a process I was already familiar with – and that everyone around me faces – has been comforting.

Gradually, I have decided that just as the appearance of a new or deeper wrinkle on my brow is not the end of the world, neither are the lasting signs of this operation. Just like the physical ‘scars’ of ageing, my new wounds are best viewed as sacrifices made in the name of life.

* My particular situation is, if you want to know: BRCA1 positive, cancer-free so far, in the midst of recovering from a bilateral prophylactic mastectomy and immediate reconstruction using own tissue from thighs (including the gracilis muscle from each leg).

It’s amazing what they can do these days

In the weeks after I received the news that I am what they call a BRCA1 carrier, a few people I spoke with used a phrase that I quietly grew to dislike. “It’s amazing what they can do these days”. They being the medical experts, of course.

The phrase was generally uttered by a friend or family member in an attempt to make me feel better. I felt guilty for feeling annoyed, since I knew they were being kind – and were  probably shocked by what I had just explained to them.*

The reason I didn’t like ‘It’s amazing what they can do these days’ was because I was in the midst of confronting – with care and determination – exactly what they – the medical experts – could not do for someone like me.

On the plus side, they could take a small amount of blood and within a few weeks tell an individual like me that she has an up to 85% chance of developing breast cancer, probably at a younger rather than older age. (That sounds like bad news, but I’m a firm believer that knowledge = power.)

Less positively, they couldn’t tell me exactly when the breast cancer would come, or whether – if I kept eating industrial quantities of broccoli – somehow I’d be the extra lucky member of my family and prove indestructible.

The blood test also allowed them to tell me that I have about a 1 in 2 chance of developing ovarian cancer, a cancer with a death rate so high it is rapidly becoming a scandal.

But they couldn’t tell me that they have methods to catch ovarian cancer early, as they have for breast cancer. Because they don’t. None.

And they couldn’t tell me anything useful about the way being BRCA1 positive may increase the risk of developing a string of other cancers: pancreatic, stomach, esophageal, uterine, bowel, melanoma. In many cases, the increased risks are likely to be small enough for me to categorise them as ‘not worth worrying about’,  but I can’t deny that it is too early for much useful data to be floating around the interweb.

So every time someone said ‘It’s amazing what they can do these days’, I was thinking ‘You’re right, I’m so, so much luckier than the generations of women before me, but the medical experts aren’t magicians. So let’s be realistic.’

What I learned about myself in the weeks after I received my test result is that when it comes to life and death I like to be realistic. I don’t dissolve into a puddle of tears (except quietly when I am already in the bath, which has always been my preferred venue for teeth gnashing & despair).

I get up, go to work, go home and…think. My consolation during those weeks: I may have one defective seventeenth chromosome, but I haven’t lost my marbles.

From the beginning, I accepted that there are limits to what they in the world of medicine can do for me. So I sought to map what those limits are. I wanted no platitudes, no blind faith, no ‘it’ll all be all right in the end’, and absolutely no panic. Instead, I wanted facts, stats and summaries of research trials.

I became adept at leaving work at the end of each day and systematically clearing my mind for the next task, that of reading and weighing up each new bit of information against all the others already in my head. I asked the questions every journalist should pose as she reads her own or others’ work: ‘What don’t I know? What is missing? What questions haven’t been answered? Where are the gaps?’

All this so that when I saw them next – and there were many appointments – I could ask for the right kind of help. I had no interest in asking for what they couldn’t give. So I sought no promises, no magic bullets. I asked for what they could do with what they do know.

And what I discovered is…?

I discovered that IT REALLY IS AMAZING WHAT THEY CAN DO THESE DAYS. Using a microscope and a level of expertise that takes my breath away, an army of them needed just eleven hours of surgery time to transform me from being at high risk of developing breast cancer to being virtually risk free – and at the same time (and this is what took the vast majority of the surgery hours and skill) preserving so much of my ‘chest’ that in a few months’ time I should be looking…pretty damn good.

Now, when someone says ‘It really is amazing…’ I am the first to agree.

What is my body capable of?

I remember a postcard that I saw repeatedly in the early 1990s. It was the sort of postcard that you could only find in feminist and/or queer bookshops in funky parts of major cities in North America. On one side was a shocking and beautiful photograph of a topless, middle aged woman with just one breast. She looked proudly at the camera. Where her second breast should have been there was a long scar, over which a colourful tattoo was etched. The photo embodied the then-new phrase ‘breast cancer survivor’. Her body and her direct gaze said it all: ‘I have survived. See how strong I am.’

It was in the early-to-mid 1990s that some women in the USA began to have preventive – or prophylactic – mastectomies. They and their doctors suspected there was some type of genetic problem in their families and that they were very likely to develop breast cancer. And as breast cancer was then more frequently a fatal disease, here was a way to survive – remove the vulnerable tissue, disfigure yourself in order to live.

Some people felt that such purposeful maiming was wrong. I remember being vaguely aware of this controversy, though I do not remember when exactly I heard that people’s suspicions had been correct, and that there really were some families that carried a genetic predisposition to breast cancer.

When did I learn this? Suddenly, it was simply a fact and all I can remember is feeling sorry for those women. So, so sorry. To have to disfigure yourself to live…

Almost two decades later I am one of those women.

It took a while for my family to be identified as one that carries the BRCA1 mutation, although considering the short lifespans of almost all of the women on my father’s side of the family, it’s a wonder we didn’t realise it straightaway.

Of the women in my family who have inherited this funny little quirk of the 17th chromosome, I am one. So here I am: 41 years old, healthy and strong, but with a genetic profile and a family history that suggests I am very unlikely to remain so.

Which brings me to the question that is the title of this blog post: What is my body capable of?

My experience tells me that my body is strong. It has kept going without developing cancer for longer than the bodies of some of my female relations who are, or were, also BRCA1. For this, I am so grateful. I love my body and I am grateful that it is such a wonderful and beautiful machine (and much more besides).

But like all bodies, mine will betray me. Because I have only one ‘good’ 17th chromosome, my body will sooner rather than later be unable to correct the little errors that gradually develop into cancer. It will secretly harbour something that will grow and grow. Much as I would like to pretend that I will be strong forever, I only have to read the BRCA1 data and think of my aunts, grandmother and great aunts to know.

I have become one of those women I used to pity.

And this is why I will soon take myself by the hand (figuratively, of course!) and ask my body (with the help of my mind) to do an enormously difficult thing – to allow its shape to be changed, to allow disfigurement.

And then? To get up and walk again. And dance, and cycle, and run around the park, and laugh. What is my body capable of? I have to believe it is capable of that last bit…recovery.