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Sisters Under The Skin
Sisters Under the Skin, article courtesy of Elle Magazine (UK), September 2001
As told to Natalie Meddings.
Here's an awful truth: your identical twin sister is diagnosed with
an advanced case of breast cancer and the chances are that you could
also develop the disease. How do you both cope? Dawn Dewis
and Tracy Copson talk to ELLE about their battles with
the big C - and each other
Dawn's Story
You could say my twin sister, Tracy, and I had been as one all our
lives. What she felt, I felt; what was important to her was important
to me; and if something happened to her, well, it might as well have
happened to me, too. But cancer changed that.
It all began one day in September 1998, when we were both 32 years
old. Tracy mentioned to me that her left breast felt a bit painful;
that the skin was dimpled, like orange peel; and that when she raised
her arm, it felt like it was tugging. Tracy put it down to muscle
strain - she was going to the gym a lot at the time.
But a couple of weeks later, we were watching TV when an item came on
about breast cancer. A doctor was listing the key symptoms. When he
finished, I looked at Tracy immediately. She had all of them. 'Get it
checked out, please, Tracy,' I begged. 'You have to go to the
doctor as soon as you can.' She agreed, but it was to shut me up more
than anything. She didn't seem concerned. 'I'm telling you, I've
pulled a muscle, that's all,' she said.
Tracy's GP immediately referred her to hospital for a mammogram, but
she was still so unconcerned that she didn't even ask anyone to
go with her to her appointment. But I was really anxious. All that day,
I paced up and down, my stomach knotted from nerves. I knew she'd
call me the second she was home - we usually spoke about five times a
day - so when four, then five o'clock passed, I started to panic.
'Something's wrong,' I told my husband, Paul. Finally, just after
six, the phone rang. It was my sister's boyfriend, Steve.
'I think you should talk to Tracy,' he said. She came to the phone
but couldn't speak. All I could hear was my sister sobbing. 'I've got
cancer,' she finally stammered. And then I started to cry, too. It
was an irrational response perhaps but, like most people, I saw the
c-word as a death sentence. I'd heard too many awful stories and the thought of that happening to Tracy, of her not being there…
After a couple of minutes, I forced myself to take a deep breath. My panic wasn't helping either of us and I knew I had to be strong for my sister. I started to ask her for details but she was in too much of a state. I told her I'd be round
to see her the next morning.
When I walked in the next day, it almost broke my heart to see her. Tracy would normally be dressed and ready, looking lovely. But it was like something had snapped inside her, as if she'd just given up overnight. She was wearing an old
jogging suit, her hair was all over the place and she was slumped at
the kitchen table, her face buried in her arms.
She couldn't stop crying, an awful, violent, breathless crying, and I
could hardly bear it. Eventually, I managed to calm her down, to talk
about what had happened at the hospital. The cancer was advanced, she
said. Her only chance of cure was a full mastectomy on her left
breast. They'd given her a date for five weeks time.
It was horrific to hear, but it was also a relief. With the prospect
of surgery and follow-up chemotherapy, there was a good chance she'd
come through. But Tracy couldn't see it like that. Death wasn't the issue for her don't think she could take it that far - all she could think about
was losing her breast. 'I won't be a woman any more,' she cried. 'Can
you imagine how deformed I'm going to look?' and she broke down again.
I tried to rationalise with her. 'But they'll rebuild it, you won't
be able to see it, it's not like it's a leg or an arm - or your face,' I argued, but it was useless. 'I'd rather it was an arm or a leg,' she replied. 'If you
don't have your breasts, what are you?'
In the weeks running up to Tracy's mastectomy, I went to see her
every day to reassure her and talk her through it. But it was an
impossible job. All our lives we'd been on the same side, understood
each other perfectly, but now I couldn't reach her. Cancer set us apart. This
was a place I couldn't go to and I felt that she'd left me behind.
What was happening to Tracy got me thinking. I knew that about 10 per
cent of breast-cancer cases in the UK are genetic. As identical twins
we share the same genes. If Tracy's condition had been inherited,
there was a chance it could happen to me, too. But right then wasn't
the time to worry about it. Tracy needed all my attention. Still, it
was there in the background, ticking quietly away.
The day after her mastectomy, when the effects of the anaesthetic had
worn off, Tracy showed me her scar. I was taken aback and just
nodded. I knew she was testing me, that I couldn't let a flicker of
shock show. 'Well, it looks a bit sore but it's actually not that
bad, is it?' I said. But I was lying. It looked dreadful. What I saw
took my breath away but I couldn't let her see that. And I knew I
never wanted it to happen to me.
When Tracy started a course of chemotherapy we thought the worst was
over. Then one night, when I was getting undressed, I noticed some
discharge coming from my nipple. My breasts had always been quite
bumpy, but now when I checked them, a couple of lumps seemed more
pronounced. 'This is it,' I thought. 'I have it, too.'
The next day, I went straight to my GP and he referred me for a
mammogram. It was as though everything that had happened to Tracy was
happening to me, too. When they sent me to the waiting room,
I readied myself. I tried to imagine the words; how I'd react. But it didn't
happen. 'I'm glad to tell you that you're all clear,' the doctor said.
My result brought its own issues. I kept thinking, Why Tracy and not
me? She'd gone through so much distress, so much pain, but I was in
the clear.
It left me feeling drenched with guilt. It wasn't
that I wished I had cancer. I just wished she'd had
the same result as me.
The cancer had really changed Tracy. For months and months after her
surgery and chemotherapy treatment, she was in bits. She had no
confidence and that felt very strange. Tracy had always been
the bubbly outgoing one. Now, suddenly, I was the one trying to draw
her out. It left me feeling terribly protective of her, probably too
protective. I watched her every move. I'd been so shocked by the
slightest possibility that she would be taken away from me that I
felt I had to stand guard over her.
We talked and talked about what had happened, the surgery, the
cancer, how she felt. But nothing seemed to help pull her out of her
depression. She was just stuck there. Her silence was horrible,
frightening. We were used to her laughing and never shutting up, but
now she was unreachable.
Whenever Tracy went in for her chemo, she'd tell me about a letter
she'd written for me. 'It's behind the picture above the fireplace,'
she'd say, as if it was the last time I was going to see her. It
drove me wild.
I refused to go down that route. 'Tracy, you're alive!' I would
shout. I'd almost want to slap her. And then I'd feel terrible,
overcome with guilt. Because what did I know? Who on earth was I to
tell her how to be?
Nearly a year later, Tracy had breast reconstruction. The change in
her was incredible. Almost overnight, she went back to being her old
self. Yet the cancer still hangs over her - over both of us. Once it
has touched your life, you never take your health for granted again.
Certainly, I can't ever take Tracy for granted again and that has had
an impact. There's less innocence, less ease to our lives and our
relationship. On the surface, we're back to normal - she's her old
jolly self and I'm her sidekick - but there's an undercurrent there.
I think I will always be frightened for her.
We still don't know whether the cause was genetic. The only relative
we know of who has had breast cancer was our grandmother's aunt on my
father's side. As a result, Tracy's specialist suggested we might
want to be genetically tested. But at the local hospital's genetic
testing unit we were told that the link was too remote, and that the
cause was far more likely to be a mutant gene.
Of course, this interpretation has provided me with an excuse to
delay making a decision about the test. The truth is, I don't want to
have it done. Tracy has had cancer and she's already lost her breast.
If I have the test and it's positive I'll have to have a mastectomy -
and the thought of it terrifies me. Although Tracy has gone through
it, I can't imagine life without a breast. I just want to be myself.
But don't think I'm being
irresponsible and burying my head in the sand. I check my breasts
regularly and I have mammograms every year. I'm making sure I don't
give cancer time to take hold.
Tracy's Story
I was only 32 years old. No one gets cancer at that age, I thought.
So even when my GP
sent me to hospital to have a mammogram, where I spent the
afternoon undergoing a battery of tests - from having my breasts
measured to testing the breast fluid - I still assumed it was routine.
But when the doctor said, 'I'm afraid it's bad news. You have breast
cancer', it was like falling from a huge height. The shock was so
massive
I think I actually stopped breathing. I could see the doctor's mouth
moving, but it was as if someone had turned the sound down. He said
something about there being two lumps joined together, that they were
close to the chest wall and that the only way to get rid of them was
to remove the breast completely. 'Are you sure, are you absolutely
sure?' I kept pleading. I just couldn't believe something could be so wrong when I felt so well. It seemed ridiculous.
I was in too much of a state to drive myself home, so the doctor
called my boyfriend, Steve, and asked him to come in. I couldn't get
myself together to tell him, so the doctor did. 'Tracy has breast cancer,'
he explained. 'We're going to have to perform a mastectomy.'
Back home, I couldn't stop crying. I kept looking at my breast,
imagining a gap there. And the thought appalled me. It's hard for any
woman to lose a breast but, being 32, it was an extra shock. When you are
young you take your body and your figure for granted. Death and
illness just seem so remote.
The worst of it was that, faced with the prospect of losing one of my
breasts, I suddenly realised how they were utterly central to my
sexuality. They made me a woman. I couldn't stop myself from dwelling
on the fact that all these years I'd been carrying my body about
obliviously - never imagining that one day it would be cut into,
altered for ever. 'I won't be me any more, you won't find me
attractive,' I kept saying to Steve. And although he tried to
reassure me, I was inconsolable. It felt like the end of the world.
It felt very odd having to go through something so huge without Dawn.
Ever since we were born we'd shared everything: I could
remember when our breasts first grew, how we'd whispered and
giggled in our bedroom about them, comparing sizes. Now my body was
damaged and there was no way back. Before the cancer, there were
times when I hardly knew where she ended and I began because we were
so close. Now, somehow, we weren't any more. The cancer had changed
everything and I remember feeling terribly lonely. As if
I was in some foreign country and she'd never be able to join me there.
In the weeks before the mastectomy, I sank lower and lower. I wasn't
sleeping, I wasn't eating. Dawn would come round and I'd just sit and
cry. My grief was overwhelming. I'd torture myself by standing in front
of the bathroom mirror, flattening my breast with my hand, trying to imagine what I would soon look like. I even sorted through my wardrobe, throwing away
clothes I decided would be useless, like low-cut tops, all my pretty
bras, even my favourite halterneck. 'What's the point of keeping them?' I asked myself.
The day of the operation was 5 November 1998.
I was a little calmer but still tense. My stomach was clenched tight
and I just wanted it over with.
Afterwards, as soon as I was alone, I pulled the dressing down to have a look at my chest. What I saw was weird: a large, neatly stitched scar where my eye
still expected to see my left breast; there was no nipple and just a
flat expanse of skin. I could see my ribs. My left side was now one
continuous flat trunk as it had been as a little girl. I was
devastated.
I was desperate for a reaction; to see a shocked face to confirm that
I was a monster. The first time Dawn came to visit, I forced her to
take a long, hard look at the scar. I was still too fragile to cope
with Steve seeing me - the implications of his reaction seemed too
great. It was different with Dawn.
I could indulge myself, allow myself to feel really ugly and still
feel safe. So I goaded her to react.
I wanted her to see the extent of my pain; the full gory horror and
gasp. But of course, she didn't. She was just lovely. As ever, there
was just the strong, sure tug of her love. I started to cry.
A few weeks after the operation, I began a course of chemotherapy.
Things just got worse:
I was sick, I put on weight and my hair grew thin. I felt about 80
years old. The feeling of illness and self-loathing didn't lift for a
year. My confidence was shot to pieces. I totally gave up on my
appearance. I'd wear the same two pairs of trousers and a couple of
T-shirts. I never went out because I thought everyone would stare.
Dawn would try to encourage me to go shopping with her, to take an
interest in myself again, but I couldn't summon the interest or
energy. I knew my sister was only trying to help, but the simple
truth was I couldn't help myself. I just couldn't. Whenever I contemplated the
future I felt bleak, utterly hopeless. I couldn't picture myself
feeling or looking as I used to. I had just ground to a standstill.
In June last year I was admitted to hospital for reconstructive
breast surgery. I had a breast built up underneath my skin, complete
with blood vessels and tissue and skin taken from my back to cover it.
There wasn't a nipple, but at least there was some shape, a curve.
I started to feel better and even went shopping with Dawn to buy some
pretty underwear and nice tops. Little by little, the self-loathing
lifted. I had finally moved back into my body. I felt like a woman again.
Then, shortly after my operation, Dawn found a lump.The whole time I had been ill, I'd wanted her to hold my hand, to understand exactly what I was going through. Now, the thought of her having to experience what I had completely terrified me. When her test proved negative, the relief was
incredible. There was no, why me, not her? To me, it was the best news ever.
I've been clear for two years now, but I won't get a complete
all-clear for another three. Having cancer has changed my relationship to the two people closest to me.
Before, things were quite rocky with Steve: although we had been
together for a couple of years, I didn't feel sure about him at all.
But when I was ill, he was incredible - supportive, loving, accepting - absolutely as sweet as any man could be. The first time I showed him my scar, he kissed it. 'Tracy you're no different to me, you're as beautiful as you've always been,' he said. I looked into his eyes and I knew he really meant it.
My relationship with Dawn has changed. Once we thought the same about
everything, but not any more. I know she worries about me, which is
why she's so protective, but it can be suffocating. 'I'm all right,
leave me alone,' I want to say sometimes, but I don't. I know it's
because she cares. And it's strange thinking something and not saying
it.
Before the cancer, our relationship was so open, I'd never have kept
anything from her.
We're not in agreement about the genetic test, either. I want Dawn to
have it. I agree with her that we shouldn't live life through a lens
of fear, and I also understand that it's a bigger step for her than
me, because I've already gone through it all. For her it could be still to come. But if the test is positive, at least we can deal with it and get the
risk out of the way.
I think perhaps we both just need time to get over what's happened to
me. Then we'll both be strong again and able to cope with the future.
Breast cancer: The facts
Who is at risk from breast cancer?
One in nine women in the UK will develop breast cancer. However,
although more than 90 per cent are over 45, and more than half are over 60,
it has been found in girls as young as 10. Women most at risk are those who
have had two or more close relatives with breast cancer, especially a mother
or sister under 50. Factors that increase the risk include poor diet,
alcohol abuse and obesity in women over 45.
What are the symptoms?
Changes in the shape, appearance or feeling of the breasts; a lump in
one breast or armpit which is different from the other; nipple
discharge; puckering or dimpling of the skin; discomfort or
pain in one breast that is different from usual; and a rash or change
in nipple position. In advanced cancer, swollen bumps or sores may
develop on the skin.
How is breast cancer treated?
Conventional treatment involves surgery, anti-cancer drugs
(chemotherapy), radiotherapy and hormone therapy. The most commonly
prescribed hormone therapy is the anti-oestrogen drug tamoxifen.
Younger women are usually given surgery plus chemotherapy. If the
cancer is advanced it may be necessary to perform a lumpectomy to
remove the tumour and surrounding tissue, or a mastectomy - removing
the whole breast.
Is breast cancer hereditary?
Two main 'breast cancer susceptibility genes' have been identified,
and if you inherit a faulty gene, you are thought to have a much
higher risk of developing breast cancer. However, for relatives who
do not have the faulty gene, the risk of developing breast cancer is
the same as for the rest of the population.
How can I check?
Genetic testing is available for women with a family history of breast cancer.
If you have a mother or sister under 40 who has had breast cancer or
ovarian cancer, or two second-degree relatives (less than 50 per cent
of your genes) with it, you can take a blood test that shows if you have the gene.
If you think you are at risk, see your GP immediately, and he or she
will refer you to a specialist. If you do have the gene, advice and
regular screening is available. There is also the option, albeit it
drastic, of a mastectomy.
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