The taxi arrived at dawn but it could have come earlier. I’d been awake all night: terrified about the day that lay ahead and what it would mean for the rest of my life.
At the hospital I changed into a high-tech gown that would keep me warm during the long hours I’d be unconscious, and my surgeon arrived to do a quick pre-operative check. It wasn’t until she was at the door, about to leave the room, that my fear finally found its voice. “Please,” I said. “I need your help. Will you tell me one more time: why do I need this mastectomy?”
She turned back to me, and I could see in her face that she already knew what, deep inside, I had felt all along. This operation wasn’t going to happen. We were going to have to find another way.
Breast cancer had engulfed my life a few weeks earlier, when I noticed a small dimple near my left nipple. First my GP and then a breast surgeon thought it wasn’t cancer, but the biopsy revealed I had a grade 2 invasive carcinoma.
I was shocked, but not devastated. The consultant assured me I should be able to keep my breast, and cancer, I thought, I could deal with. Losing my breast I could not.
The game-changing blow came the following week. My tumour had been hard to diagnose because it was in the lobules of the breast, as opposed to the ducts – where some 80% of invasive breast cancers develop. Lobular cancer often deceives mammography, but it is more likely to show up on an MRI scan. And the result of my MRI scan was devastating.
The tumour threaded through my breast was much larger than the ultrasound had indicated, up to 10cm long (10cm! I’d never heard of anyone with a tumour that big). The doctor who disclosed the news didn’t look at my face; his eyes were fused to his computer screen, his armour against my emotion. We were inches apart, but could have been on different planets. As he began shooting terms like “implant”, “dorsi flap” and “nipple reconstruction” at me, I had not even begun to process the news that, for the rest of my life, I’d have one breast missing.
This doctor seemed more keen on talking surgery dates than helping me make sense of the maelstrom. The one thing I realised was that I had to get away from him. The following day a friend sent me a list of other consultants, but where to start? And then I noticed that only one name on the list was a woman’s. I decided to try to get an appointment to see her.
Fiona MacNeill is in her late 50s, a little older than me. She’s sensible, calm, and emotionally astute. I remember hardly anything about our first chat, just a few days after I read her name. I was all at sea, flailing around.
But in the force 10 storm that my life had so suddenly become, MacNeill was my first sight of dry land for days. I knew she was someone I could trust. I felt so much happier in her hands that I started to blot out the terribleness of losing my breast. Part of the reason was because MacNeill had found a much better alternative than the dorsi flap procedure the other surgeon was offering: a DIEP reconstruction that would use skin and fat from my abdomen to rebuild a new breast.
But I am a journalist, and here my investigative skills let me down. What I should have been asking was: are there any alternatives to a mastectomy?
I was facing major surgery: a 10- to 12-hour operation. It would leave me with a new breast I wouldn’t be able to feel and severe scarring on both my chest and my abdomen. But with my clothes on, there was no doubt I’d look amazing, with perter boobs and a slimmer tummy.
I’m instinctively an optimist. But while I seemed to those around me to be moving confidently towards the fix, my subconscious was backing further and further away. I knew the operation was going to get rid of the cancer, but what I couldn’t compute was how I’d feel about my new body.
My breasts seemed such an important part of me. I’d breastfed each of my four children for three years. I’ve always loved my breasts. They’re an important part of my sexuality, as essential to my sense of myself, in their way, as my heart or my lungs. My big fear was that I’d be diminished by a mastectomy, that I’d never again feel whole, or truly confident or comfortable with myself.
I denied these feelings for as long as possible, but on the morning of the operation there was nowhere to hide. I don’t know what I expected when I finally voiced my fear. I guess I thought MacNeill would turn back into the room, sit down on the bed and reassure me that everything would turn out OK in the end.
But she didn’t give me a pep talk, and nor did she try to tell me I was doing the right thing. What she said was: “You should only have a mastectomy if you’re absolutely certain it’s the right thing. If you’re not sure, we should not do this operation, because it’s going to be life-changing.”
It took another hour or so before we made the definitive decision to cancel. MacNeill couldn’t promise that she would be able to remove the tumour and leave me with a decent breast, but she offered to do her absolute best. What had become clear to both of us was that my mental health was at risk. Of course I wanted the cancer gone, but at the same time I wanted my sense of myself intact.
Over the three and a half years since that day in the hospital, I have had many more appointments with MacNeill. One thing I have learned from her is that many women mistakenly believe that a mastectomy is the only or the safest way of dealing with their cancer.
She has told me that many women who get a breast tumour – or even pre-invasive breast cancer such as ductal carcinoma in situ (DCIS) – believe that sacrificing one or both of their breasts will give them what they desperately want: the chance to go on living and a cancer-free future.
That seemed to be the message people took from Angelina Jolie’s heavily publicised decision in 2013 to have a double mastectomy. But that wasn’t to treat an actual cancer; it was entirely an act of prevention, chosen after she discovered that she was carrying a potentially dangerous variant of the BRCA gene.
That, though, was a nuance to many. And, in fact, new research from Southampton University has concluded that breast cancer in women with BRCA mutations is not more aggressive or dangerous than other breast cancers, which may lead to a rethink on prophylactic double mastectomy as a way of dealing with BRCA.
The facts about mastectomy are complex, but many women undergo a single or even double mastectomy without even beginning to unravel them. Why? Because the first thing that happens to you when you’re told you have breast cancer is that you are extremely frightened. What you’re most scared of is the obvious: that you’re going to die. And you know you can go on living without your breast(s), so you think if having them removed is the key to staying alive, you’re prepared to bid them farewell.
In fact – and this is something I think isn’t clear to many women with the disease – if you’ve had cancer in one breast, the risk from either a recurrence in that breast, or a new tumour in your other breast is usually less than the risk of the original cancer returning in a different part of your body. And the truth is that there’s a limited amount you can do about the cancer you’ve already had recurring in another part of your body.
But the case for a mastectomy is perhaps made more persuasive when you’re told you can have a reconstruction that will be almost as good as the real thing, possibly with a tummy tuck to boot. But here’s the rub: while many of those who make this choice believe they are doing the safest and best thing to protect themselves from death and future disease, the truth is not nearly so clear-cut.
“A lot of women ask for a double mastectomy because they think it will mean they won’t get breast cancer again, or that they won’t die of it,” says MacNeill. “And some surgeons just reach for their diary. But what they should do is ask: why do you want a double mastectomy? What do you hope to achieve?”
And at that point, she says, women normally say: “Because I never want to get it again,” or “I don’t want to die from it,” or “I never want to have chemotherapy again.” “And then you can have a conversation,” MacNeill says, “because none of these ambitions can be achieved by a double mastectomy.”
Surgeons are only human. They want to concentrate on the positive, says MacNeill. The much-misunderstood reality of a mastectomy, she says, is this: deciding whether a patient should or shouldn’t have one is usually not connected to the risk posed by the cancer. “It’s a technical decision, not a cancer decision. “It may be that the cancer is so big that you can’t remove it and leave any breast intact, or it might be that the breast is very small, and getting rid of the tumour will mean removing most of [the breast]. It’s all about the volume of the cancer versus the volume of the breast.”
I think I came about as close as it’s possible to come to a decision I believe I would have regretted. And I think there are women who might have made a different decision if they’d known then everything they know now.
Breast cancer treatment is becoming more and more personalised. An extremely complex set of variables have to be weighed up that are to do with the disease, the treatment options, the woman’s feeling about her body, and her perception of risk. All this is a good thing – but it will be even better, in my view, when there’s a more honest discussion about what a mastectomy can and can’t do.
Looking at the latest available data, the trend has been that more and more women who have cancer in one breast are opting for a double mastectomy. Between 1998 and 2011 in the US, rates of double mastectomy among women with cancer in only one breast increased from 1.9% to 11.2%.
An increase was also seen in England between 2002 and 2009. Among women having their first breast cancer operation, the double mastectomy rate rose from 2% to 3.1%.
But does the evidence support this action? A 2010 Cochrane review of studies concludes: “In women who have had cancer in one breast (and thus are at higher risk of developing a primary cancer in the other) removing the other breast (contralateral prophylactic mastectomy or CPM) may reduce the incidence of cancer in that other breast, but there is insufficient evidence that this improves survival.”
There’s also research to suggest that women who have undergone the surgery, with or without reconstruction, feel a detrimental effect on their sense of self, femininity and sexuality. According to England’s National Mastectomy and Breast Reconstruction Audit in 2011, for example, only 4 in 10 women in England were satisfied with how they looked unclothed after a mastectomy without reconstruction, rising to 6 in 10 of those who had had immediate breast reconstruction.
For much of the 20th century, a full mastectomy was the gold-standard treatment for breast cancer. The first forays into breast-conserving surgery happened in the 1960s. The technique made progress and, in 1990, the US National Institutes of Health issued guidance recommending lumpectomy plus radiotherapy for women with early breast cancer. It was “preferable because it provides survival equivalent to total mastectomy and axillary dissection while preserving the breast”.
In the years since, some research has shown that lumpectomy plus radiotherapy might lead to better outcomes than a mastectomy. For example, one large population study based in California looked at nearly 190,000 women with unilateral breast cancer (stage 0 to III). The study, published in 2014, showed that bilateral mastectomy was not associated with lower mortality than lumpectomy with radiation. And both these procedures had lower mortality than unilateral mastectomy.
A recently published Dutch study looked at 129,000 patients. It concluded that lumpectomy plus radiotherapy “might be preferred in most breast cancer patients” for whom either that combination or mastectomy would be suitable.
The week after my cancelled mastectomy, I went back to hospital for a lumpectomy. I was in the operating theatre for under two hours, I went home on the bus afterwards, and I didn’t need to take a single painkiller. When the pathologist’s report on the tissue that had been removed revealed cancer cells dangerously close to the margins, I went back for a second lumpectomy. After this one, the margins were clear.
Lumpectomies are usually accompanied by radiotherapy. This is sometimes considered a drawback, as it requires hospital visits for up to five days a week for three to six weeks. It’s been linked with fatigue and skin changes, but to me all that seemed a tiny price to pay for keeping my breast.
One irony about the rising number of mastectomies is that medicine is making advances that are reducing the need for such radical surgery, even with large breast tumours. There are two significant fronts: the first is oncoplastic surgery, where the surgeon removes the cancer and then rearranges the breast tissue to avoid leaving a dent or dip, as often happened with lumpectomies in the past.
The second is using chemotherapy or endocrine drugs to shrink the tumour, which means that surgery can be less invasive.
These days I hardly ever think about breast cancer – despite the fact that I’m well aware that I have a significant risk of it one day returning. During my lumpectomy, MacNeill did a random biopsy in another part of my left breast and discovered free-floating cancer cells. I know that increases my risk of another tumour at some point in the future; but for me, it’s a risk I’m willing to take. Breast cancer, after all, won’t kill me: the bigger danger is of the original cancer returning in another part of my body, and that danger wasn’t affected by my decision not to have a mastectomy.
In case I’m sounding brave, let me confess: I’m absolutely not. Nothing terrifies me quite as much as being encased in an MRI machine for 50 minutes, and that’s an ordeal I now have to undergo once a year. Waiting for the results of these and the mammograms and ultrasounds is traumatic. I never want to be a cancer patient again, and the checks make me into one, albeit temporarily.
I do feel, though, that in the end my experience empowered rather than diminished me, and for that I am extremely grateful; particularly to MacNeill. She was the knowledgeable person who validated my feelings; she took a big risk for me, because she couldn’t be sure she could make a lumpectomy work. Because of her, I was able to turn a situation in which I felt totally out of control into one where I felt I was in the driving seat; or maybe I was the co-pilot, with Fiona. She has told me that, of the many hundreds of breast cancer patients she sees, few manage to put fear to the back of their minds and become genuine partners in the decision-making. I am ridiculously proud she counts me among them.
What of the reaction of others? That morning at the hospital, I watched my husband go through disbelief (how could we possibly be going to call this operation off?), then anger (did this mean I was going to die? How could I make that choice, when it affected him and our children?) to acceptance that I wasn’t mad or foolish, but was listening to my instincts as well as to the medics.
Thereafter, what I have realised is that others take their lead from you. My four daughters were shocked when they heard I hadn’t gone through with the operation, but when I explained my reasons, they understood. Similarly friends who thought I was being foolish, or was in denial, now know why I made the choice I did. Risk taking isn’t something you can legislate for: it’s innate, individual. The important thing is amassing as much information as you can, listening to your inner voice, and then making the choice that’s right for you. And that’s what I did.
The truth is that I don’t know what would have happened if we had gone ahead with the mastectomy. My gut instinct, that it would leave me with psychological difficulties, might have been misplaced. I might have been fine after all with my new body. But this much I know: I could not be in a better place than I am now. And I also know that many women who have had mastectomies do find it difficult to reconcile themselves to the body they inhabit after surgery.
What I have discovered is that a mastectomy is not necessarily the only, the best or the bravest way to deal with breast cancer. The important thing is to understand as far as possible what any treatment can and cannot achieve, so the decision you make is based not on unexplored half-truths but on a proper consideration of what is possible.
Even more crucial is to realise that being a cancer patient, terrifying though it is, doesn’t absolve you of your responsibility to make choices. Too many people think their doctor can tell them what they should do. The reality is that each choice comes with a cost, and the only person who can ultimately weigh up the pros and cons, and make that choice, isn’t your doctor. It’s you.
Breast cancer: the facts
Breast cancer is the most common cancer in the UK, affecting 1 in 8 women at some point in their lives – that’s more than 50,000 women diagnosed each year. In addition, about 5,500 women are diagnosed each year with a non-invasive or ‘in situ’ breast cancer, which may be a precursor to invasive cancer.
Breast cancer develops in the ducts (in 90% of cases) or the lobules or milk-producing glands (10%). Ductal breast tumours are more likely to be felt as lumps; lobular cancer may not produce a palpable lump, but may cause changes to skin texture (puckering or dimpling) or the nipple may be pulled in, or the skin may seem different. Because they are harder to diagnose, lobular tumours are often bigger by the time of diagnosis.
Survival rates have increased considerably over recent decades: 40 years ago, 40% of women were still alive 10 years on from a breast cancer diagnosis; today, it’s 80%.
This is an edited version of an article first published by Wellcome on Mosaic. It is republished here under a Creative Commons licence
