‘I’m nearly done, all looks fine, said the radiographer… Then, in an instant, my whole world turned upside down’: ALEXANDRA SHULMAN reveals her breast cancer diagnosis – and worrying new guidelines for GPs that mean cases can be missed
It was a clear, sunny, blue-sky day the day I learned I had breast cancer. The brutally unexpected so often seems to happen on such days.
For a few months over the past summer, I had an intermittent sharp pain under my left breast, as if the wire from a bra was cutting in.
Sometimes it woke me at night, sometimes it disappeared for days. But there was no lump or general tenderness.
When I mentioned the pain to anyone, they would say: ‘Well at least it’s not breast cancer because you don’t get a pain with breast cancer.’
But then I read about how Girls Aloud singer Sarah Harding, who sadly died of breast cancer in September, experienced a pain which she attributed to a guitar strap rubbing her breast.
It made me think that I should get my pain investigated – but not right then. At some point. In the future.
It was a clear, sunny, blue-sky day the day I learned I had breast cancer. The brutally unexpected so often seems to happen on such days
I have been religious about mammograms and going private to have them annually for many years.
I was due another but couldn’t get hold of my gynaecologist who generally refers me for them, so I booked to see my GP.
It was a private GP because I knew that getting to see my very efficient NHS one would take more time and that arranging what would be considered a non-urgent mammogram would take longer. With a busy autumn ahead, I wanted to get this off my mental to-do list.
My doctor of 40 years said, as he so often has with one or other of my worries, that he didn’t think it was anything sinister and was pretty certain it was a viral inflammation around the rib.
Just to be on the safe side, though, I should see Professor Kefah Mokbel, a breast specialist.
I told my sister, who had been diagnosed with early-stage breast cancer two years previously, that I was going to see Mokbel.
She replied he had been her surgeon. ‘It’ll be fine,’ she said.
During the three weeks it took to get an appointment with the much in-demand Prof Mokbel, I went on holiday to Croatia and swam in the clear sea, ate delicious cheeses and hams and didn’t have a single twinge.
I began to wonder if the pain was stress-induced – even though I had no obvious stress other than not being able to figure out the right subject for a new book. Perhaps I should cancel the appointment?
So it was in a thoroughly ‘It’ll all be fine’ state of mind that I walked into the Princess Grace Hospital in Marylebone that bright autumnal day, having first dropped into the nearby Bella Freud shop and toyed with buying a silk dress for the party season.
For a few months over the past summer, I had an intermittent sharp pain under my left breast, as if the wire from a bra was cutting in
I mentioned to Prof Mokbel that he had operated on my sister and he told me that she was doing very well.
He said he could find nothing at all unusual in my breasts and sent me along the corridor for a mammogram.
That returned not only clear but identical to the previous years. I was naturally happy with the news and my thoughts began to turn to what to cook for dinner.
After all, mammograms were what I and millions of women rely upon to show up breast cancer. Everyone feels relieved when there’s nothing there.
But Prof Mokbel had organised an additional ultrasound scan to look at the breast another way. A woman radiographer explored the whole area with a probe as I lay on a bed.
Sometimes it woke me at night, sometimes it disappeared for days. But there was no lump or general tenderness
‘All looks fine,’ she said. ‘It’s nearly over.’ I mulled a little more about dinner – and how infuriating it would be if it was in these last seconds that something came up.
Which was exactly when she pressed on the area where the pain occurred under the breast – and bingo. It hurt like hell.
Immediately she said, looking at the screen, that she could see something. And she didn’t like what she saw. She was certain it wasn’t a simple cyst.
And that was the moment when the world flipped. The word I can’t get out of my mind is pan-icy – which is what my phone’s predictive texting changed the word panicky to.
Pan-icy, a perfectly pitched description of the cold terror that flooded through my body.
A biopsy followed right there to test what she had seen and then I was back in the professor’s office, to be greeted with the news that yes, there was a tumour, relatively small.
Because of where it was located, deep under the breast on the muscle of the rib, it hadn’t shown up on the mammogram.
It was fortunate, he said, that he had ordered an ultrasound, in part because I had told him of my relationship to my sister. Breast cancer is known to have familial genetic links – although as it turned out, ours didn’t.
I walked down Harley Street, thinking how often I had wondered whether others I’d seen emerging from behind doors in this world-famous road had just learnt good or bad news.
And wondered when it would be my turn to leave an appointment, having learnt that everything was not, as it always had been, just fine.
Well, now I knew.
As I was in the fortunate position of being treated privately, everything kicked into action very quickly, although all my treatment would have been available on the NHS.
I had an MRI, which gave more information about the tumour, and was allocated a team of oncologists: Dr Sarah Harris, who would look after any radiotherapy required, and Professor Peter Schmid, for possible hormone treatment and chemotherapy.
None of these were words I wanted to hear. They placed me in the land of the sick. I knew enough about breast cancer to know that, one way or another, a cancer like mine should be treatable.
But I was floating around this new world with no control. My diary, which was filled with meetings and parties and book festivals to finally promote the book I had published last year, was suddenly filled with very different kinds of appointments.
But then I read about how Girls Aloud singer Sarah Harding, who sadly died of breast cancer in September, experienced a pain which she attributed to a guitar strap rubbing her breast
I began to feel a fraud for having engagements at all, when it was unclear what my future would hold. Each time I walked into another doctor’s office, I heard the words: ‘The gods are laughing at your plans.’ Who was I to have plans?
A week later, dressing for another visit to Mokbel, I wondered what to wear. I put on a black jumper and then decided black was too gloomy, replacing it with a fluffy pink number.
Then I remembered that pink was the colour of breast cancer, which made me feel queasy, but by this point I was running late and had to stick with it.
The news was on the whole good. I learned that the receptors that feed the cancer were oestrogen-positive, which meant I could have a lumpectomy before any further treatment and there was no evidence, so far, of any spread. I would not need a mastectomy.
Alexandra Shulman attends a cocktail party in honour of Alison Loehnis’ 10 year anniversary at NET-A-PORTER on February 19, 2018 in London
But – and I came to learn there is always a ‘but’ – there was an indicator which showed an elevated degree of aggression.
I would definitely need to have radiotherapy and hormone treatment, but I would have to wait to discover whether I would be advised to have chemotherapy.
Another week and I was in hospital, waiting for the operation and watching Clarkson’s Farm on my laptop (which I highly recommend to anyone wanting to be distracted from concerns about their own mortality).
The operation, I was told, successfully removed the cancer, along with lymph nodes to test. But I had to wait for results on the tumour to decide how to proceed.
Results: how quickly the years have flown. Once the word applied to my dubious teenage exam performance. Now it referred to potentially life-threatening information.
Waiting is not my forte. People said not to worry, but as soon as I felt any degree of calm I would tell myself that was hubristic. I should worry. Worry was only sensible preparation. Prepare for the worst is my natural modus vivendi.
To those I confided in, I wailed that I really didn’t want to have chemotherapy (as if anyone does) because I couldn’t be put out of action for months. How would I work? In fact, I was told by the medical team that many people find it perfectly possible to carry on working. OK. But how would I deal with losing my hair? Was this the moment I could at long last attempt a Blondie wig? It didn’t seem much of a consolation prize.
As someone who is used to control and running things, I surprised myself by wanting to hand myself entirely over to the experts.
Unlike many friends who have been in similar positions, I did no research. Not a single Google. I didn’t want advice from lay people to take mushrooms, or CBD oil, or consider an opinion from America.
It made me think that I should get my pain investigated – but not right then. At some point. In the future
But, irrationally, I also couldn’t bear not doing anything. I had been a trustee of the Royal Marsden Cancer Charity for eight years and had always thought I would go there if I had a cancer diagnosis.
After all, it is one of the leading cancer hospitals in the world. Why, I worried, was I not there? But to change horses and move to a different hospital and treatment team panicked me too.
In the spirit of trying to get some agency in the situation, I got in touch with the Royal Marsden and had the privilege of a conversation with Professor Stephen Johnston, their hugely respected Head of Breast Cancer.
He told me that treatment of a cancer like mine was pretty well the same everywhere.
He knew my team, who were doing all the right things, and if I wanted he would have a look at the results when they came through. It was enormously reassuring.
I asked him if it was OK to have a glass of wine to deal with the anxiety. ‘A glass?’ he said. ‘Have as many as you like. Well. Perhaps not a bottle.’
The next results brought the fantastic news that the lymph nodes were clear – there was no spread.
I met my oncologist, Prof Schmid, who said the magic words that I no longer had breast cancer. It was gone via the surgery. But further genomic testing would help determine whether chemotherapy would be advisable to prevent recurrence within ten years.
‘Ten years?’ I said. ‘Surely different treatments will be available by then?’ He replied that, unfortunately, in the case of breast cancer, if there is a recurrence it is often more aggressive and, while treatable, not curable.
Did I want to know more about chemotherapy? ‘No,’ I answered, bad temperedly. I was fearful I would learn all too much about it soon enough. There was more waiting. More wakeful nights.
Finally, two weeks later, I was back with him. The prognosis was excellent. He and Prof Johnston had incredibly kindly reviewed the results jointly and agreed that my cancer was very low risk and of a type that would respond well to a hormone therapy called letrozole, to be taken for seven years, and a week of radiotherapy.
The chemotherapy that I so dreaded would make little difference. There was no need for it. I may feel tired from radiotherapy. Yes, there may be side effects from the letrozole.
I have been religious about mammograms and going private to have them annually for many years
The HRT which has helped me through menopause has had to stop as it provides oestrogen, the hormone feeding my cancer. I will need infusions to help prevent osteoporosis. But to my mind, I have been given a wonderful reprieve.
I have also been very lucky. The vast majority of breast cancers are discovered by mammograms.
Mine wasn’t because of where it was situated. It is relatively rare that breast cancer is indicated by a pain – indeed, my NHS doctor has told me that bilateral breast pain (meaning pain on both sides) has just been removed from the Pan-London Breast Cancer Guidelines for urgent referral to a specialist.
But my only symptom was a pain and my cancer was only discovered by the additional ultrasound that I was given. The story could so easily have turned out differently.
And the first thing I did was to go out and buy that dress. And book a hair colour appointment.
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