In praise of lab workers

A lot of people are profoundly frustrated by the limitations of modern medicine, let down by how powerless conventional medicine can be to ‘cure’ so many of the ailments that afflict us. I agree, and yet my experience has also made me feel increasingly in awe of the skillful care I receive – in some cases from people I will never meet. These are people who know nothing about me as the quirky individual that I am and who, nevertheless, do all they can to help keep me healthy. The world is full of ‘haters’, but it’s also full of good people who use their scrupulous professionalism to care for complete strangers.

I was reminded of a particular group of strangers who take care of me ‘from a distance’ a couple of weeks ago when I sat down to read a two-page laboratory report produced following a recent operation of mine. I had had both of my apparently-healthy Fallopian tubes removed in order to reduce my risk of developing ovarian cancer – this was the lab report detailing whether the material removed really was healthy. Though I had been told by my GP the results were fine I wanted to see for myself that I really could relax – that I wasn’t one of the small number of women whose tubes look fine to the surgeon who does the op, but upon specialist examination in the lab show signs that they harbour an early cancer or a pre-cancerous condition.

Like Angelina Jolie, I am a BRCA1 mutation carrier, so I was at unusually high risk of ovarian cancer – possibly even more likely to develop it than not to. All of the women on one side of my family in the two generations above me – yes, 100% – had early cancer diagnoses, with all but one of these women dying young. More specifically, my grandmother died of ovarian cancer. This is what had pushed me toward what they call ‘risk-reducing surgery’. I knew I was living with a very high risk. But I’d been putting off the officially-recommended operation that is known to reduce risk significantly. This involves removal of ovaries and Fallopian tubes, leading to ‘surgical menopause’. I was delaying the op because abrupt and early menopause can brings its own health risks. I had already undergone two operations to reduce my breast cancer risk.

After a couple of years of reading summaries of medical studies in the evenings after work and of living with the anxiety that naturally comes with not knowing if a few days of feeling a bit unwell every once in a while might be an early sign of cancer, I decided to have an op. But a different one. This is the removal of Fallopian tubes only, which are increasingly thought to be the source of many of the most aggressive so-called ovarian cancers. More and more often, the medical literature refers to ovarian and tubal cancers. By removing my Fallopian tubes I have reduced my cancer risk significantly and avoided menopause…for now. I’ll remove my ovaries in about 5 years, when I’m closer to natural menopause. Hopefully, that will make for an ‘easier ride’.

But back to that lab report. It wasn’t lengthy, but one thing was immediately clear. The people in the lab who had received my tissue for analysis understood the significance of it and they knew that the results of their work could have a big impact on my life. They had known what to do – there on the first page was confirmation. The words: “BRCA1 protocol”. I felt like saying ‘thank you’ right there and then. Thank you for doing the right tests. I had been warned that some BRCA carriers’ tissue has slipped through the net, and not been subject to these specialist tests.

As I read on, slowly deciphering the report’s careful, technical descriptions of my tissue followed by the results of the slicing, dicing and staining techniques they had employed, I felt such appreciation for these strangers’ care. They knew they were looking for tiny but crucial signs of something having gone wrong. Did they find any? The short and simple answer is ‘Probably not’. Hurrah! I took action early enough. No mini-cancer detected. I’m safe…for now. The longer answer – spelled out in a paragraph of the report entitled ‘microscopic results’ – is that maybe there was something (or several somethings) that might be a sign that something was going to go wrong in future. But current medical knowledge of this area of female-anatomy-meets-cancer is remarkably limited and we just don’t know.

At the end of the report there’s a line stating that my case was reviewed by two other doctors. Quality control. I hope that all the people involved – and all staff in histopathology labs across the UK (and, hey, everywhere!) – know that what they do matters. They find the signs (confirm their absence) that tell complete strangers that there is something wrong, that help is needed, that something should be done. In my view, these are good people whose jobs are inherently valuable and meaningful. I thought a lot about people who work in histopathology labs in the days after I read that report, and about the kindness of strangers.

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.

Defining my terms

“Who am I?” This is the classic question for any navel-gazing type and I’ve been known to ask it ad nauseum. But last year, as I prepared for the big op*, I did not ask it at all. Instead, I found myself asking a new question: “What am I?”

Faced with a genetic status that quickly led to appointments at four different London hospitals, I wasn’t interested anymore in the self-indulgent worries that can lie behind ‘who am I? Now, I was obsessed by the “what”. What is this body of mine? It isn’t what I had thought it to be.

I began to joke with friends that the surgeons would turn me into the Bionic Woman. Clearly, this was an attempt to put a positive spin on my decision to submit voluntarily to serious physical trauma.

Who wouldn’t want to be the Bionic Woman? In the late 1970s, when I was a kid, the American television programme Bionic Woman was a huge after-school hit. Each episode began with the tale of how a fictional tennis star played by actress Lindsey Wagner was rebuilt by surgeons, following a skydiving accident. The result was a new body boosted by implants that gave her super-human powers – extra-sharp hearing, a running speed of 60 miles an hour, and bone-crushing strength in one arm.

To make myself and others feel better, I joked that I was going to be bionic, too. But as the operation drew closer, I stopped telling this joke. Because it was a lie. I had to admit to myself that there was another word for me. A truer word.

What am I? I am a mutant.

This is not such an easy word to embrace, but it’s the one that fits. The reason for the operation – and the two more still to come – was to help my body cope in the face of a genetic mutation. The inherited quirk present within one of my two 17^th chromosomes is one that weakens my body, rather than offering super-human strength. And it is replicated in every single cell of my body, coded into my DNA and undermining my body’s ability to repair certain types of cellular damage.

Three months have passed since my big op and I can put hand on heart and declare that there is nothing bionic about me, with the possible exception of my emotional resilience. Maybe that has been quietly rebuilt? I certainly feel emotionally solid these days.

There have been moments when I have felt uncomfortable at the thought that I am mutant, but most of the time I accept it. Part of this acceptance is because I believe that one day almost all of us – let’s say everyone, just to be inclusive – will be informed by the medics that our genetic profiles include one or more mutations. Some of these will be dangerous hereditary “germ-line” mutations like mine, others may be beneficial, making some people stronger and fitter in particular ways. Others might be one-off mutations developed during an individual’s own lifetime. How likely is it that any of us is genetically ‘pure’ by age 40?. The chromosomes that form most of us have got to be a bit wonky.

These days, inheritable genetic mutations like mine are being discovered thick and fast. A mutation has even been found that is thought to make the people who carry it more impulsive and therefore more prone to self-destructive behaviours like gambling and excessive eating and drinking. Let’s make sure our employers can’t ever test us for that one, huh?

Being diagnosed as a BRCA1 carrier has changed how I understand my body. Precisely how will it betray me? Can I arrange a fix before it does? In some ways, my body is strong and healthy – it looks that way – but now I know that it holds an invisible and highly-dangerous weakness.

Given this body, my answer to the question ‘Who am I?’ has changed too. I am all the things I used to be, plus I am mutant. But I know I’m not alone. To be an individual human is probably to be a genetic mutant in some way.

So as I walk through this world burdened with the knowledge that I am made of defective DNA, I increasingly think of myself as a harbinger of what’s to come. One day, we will all be informed of our genetic Achilles heels. I just happen to be part of the vanguard.

* For those who don’t know the background, I had a prophylactic bilateral mastectomy with accompanying skin and muscle grafts.