Rachel White, who was at high risk of developing breast cancer, was reluctant to undergo a double mastectomy like her aunt, cousins and sister. Instead she came up with a solution that has since helped many other women in her position
“How I escaped breast cancer.’’
Iwas at my older sister Heather’s house, five minutes from my own home in Accrington, UK, one day in October 2008, when she mentioned a health issue that was worrying her. “I think there’s something wrong with my breast,’’ said Heather, now 45.
“What do you mean?’’ asked Lindsey, our younger sister who was visiting too.
Heather said she had found an indentation on the underside of her left breast. She had been to the doctor three months before and a stand-in GP who examined her said he didn’t think it was anything to worry about. He told her to keep an eye on it and come back if anything changed.
“Can you have a look?’’ she asked us, a tinge of worry in her eyes.
“There is something hard behind the dent,’’ Heather said, as Lindsey and I looked.
We weren’t worried at first. We didn’t think it was breast cancer as we all assumed you had to have a lump if you had breast cancer. “Go back to the doctor and get it checked out again, but I am sure you’re fine,’’ I reassured her, hoping I was right.
Later that day we went to our Aunt Pat’s house. Heather, still concerned, told Pat what she had found.
“That’s strange,’’ Pat said. “Rowena found a lump in her breast while she was in the shower this morning.’’
Rowena, then 29, was Pat’s younger daughter. She and Heather both went to their doctors the next week and were referred to hospital for tests.
The shocking results came back a week later: they both had cancer. Rowena’s was grade two and Heather’s a more serious grade three.
Receiving two diagnoses of cancer in the family was heartbreaking, but fortunately, although devastated by the news, both Rowena and Heather were strong and positive. “We can beat this,’’ said Heather, putting on a brave face. “We won’t let cancer take over,’’ added Rowena.
The consultant suggested Heather have a lumpectomy – a surgical procedure to remove the cancerous tissue – as well as chemotherapy.
“No – I want the whole thing removed,’’ she said, not wanting to take any chances.
So in early 2009 she underwent a mastectomy to remove her whole breast. Heather found the experience traumatic, but fearing that the cancer may affect her other
breast, she told the doctor “I want the other one off as well.’’
“But you don’t need it done,’’ the doctor tried telling her.
“Please doctor, I don’t want to take any more chances,’’ she said, adamant and scared that the cancer would return.
Eventually in mid-2009, she had her other breast removed and tissue expanders – inflatable breast implants that stretch the skin and muscle to allow for future, more permanent implants – put in both breasts. Three months later the expanders were replaced with implants.
Rowena was also told she also needed a lumpectomy, and she underwent the procedure after having a series of chemotherapy first to shrink the tumour.
Getting on with it
Rowena and Heather just wanted to get rid of the cancer and would ring each other up for support and to talk about what they were doing. Even in the face of such adversity, they tried to just get on with their lives.
During a consultation with her doctor, Heather told him about Rowena having breast cancer, and that our grandmother Margaret had died of ovarian cancer aged 64.
“It could be hereditary,’’ he said, explaining how a gene could be responsible for some cancers. “The BRCA1 gene produces tumour suppressor proteins. If it’s mutated or damaged, it allows cancer cells to multiply. Your family should undergo a BRCA1 gene test to determine if they are susceptible to cancer,’’ he said.
First Rowena and Heather got tested for the faulty BRCA1 gene. The results came back and the gene was present in both of them.
Distraught but determined not to allow the disease to hit anybody else in the family, Heather came to visit immediately and told Lindsey and I what the doctor had told her.
We weren’t shocked as we guessed there must be something in the family gene pool that was causing the cancer. We got geneticists to trace our family tree. We knew that our grandmother had died of cancer, but they found that six women – four of our grandmother’s sisters and two cousins – had died of ovarian cancer too, and the youngest had been 49. It felt like cancer was chasing us.
One day in September 2009, Heather dropped by. “I want to tell you something,’’ she said. “Since cancer seems to be in the family I suggest you get tested too.’’
“Well, if you can go through chemo and a mastectomy, then we can find this out for our family’s sake,’’ I said, thinking of my husband Alan, 53, and children Zak, 17, and Zoe, 15.
The test was conducted free of charge at St Mary’s Hospital in Manchester. I had to visit a psychologist beforehand to make sure I was in the right frame of mind to deal with the results, whatever happened. The blood test was a week after that, and the results were scheduled to come back four weeks later.
Waiting for the test report to arrive was gruelling. I had four more weeks of counselling before I was given the results and while I was bracing myself for the worst, I was also hoping and praying that maybe the cancer would have disappeared from our family line.
Clutching Alan’s arm, I felt clammy and nervous when I went to pick up the results.
“I hope it will be all clear,’’ I kept saying to myself. But I was in for a shock.
The doctor who handed over the report to me was very matter of fact. “I’m really sorry,’’ he said. “You have the BRCA1 gene.’’
Alan took my hand, giving me his support. For a moment I felt almost dizzy. The news was like a hard punch delivered to my stomach.
It can’t be, I thought. Maybe he was reading somebody else’s report. “Are you sure?’’ I asked the doctor. “Yes,’’ he said, unable to soften the blow. I still could not believe it. There had to be some mistake. It was as if my mind was refusing to accept the fact.
Alan tried hard to pacify me. “You don’t have to worry. Nothing’s going to happen to you. You will be fine,’’ he kept saying.
I later found out that five other members of the family – Rowena’s twin Caroline, her sister Melanie, their mother Pat, my mum and my uncle – also had the faulty BRCA1 gene.
The psychological sessions I underwent before getting the report were helpful because they kind of prepared me for this but still, holding the report that said I was at extreme risk of cancer was devastating.
While during the counselling sessions I was sure I would have everything done to minimise the risk – a double mastectomy and my ovaries out straight away – in actual fact I reacted very differently when I received the report.
When doctors asked if I wanted to have a
‘I was bracing myself for the worst, but I was also hoping and praying that maybe the cancer would have disappeared from our family line’
mastectomy, I immediately declined. I was terrified, but not ready for such a drastic step.
“You should think about having your ovaries taken out, as you have a 65 per cent chance of getting ovarian cancer,’’ the doctors told me. I allowed that to sink in and then finally agreed.
I had the operation at the Royal Preston Hospital, and was out the next day.
Pat, Heather and my cousins, not wanting to take any chances, had immediately opted for double mastectomies. But I was too scared to go through with the major surgery.
“I can’t do it,’’ I sobbed to Alan. “That’s all right,’’ he soothed. “Let’s go back to your
genetics counsellor and see what she says.’’ I nodded silently then made an appointment.
The genetics counsellor was very kind and went to great lengths to put me at ease when I explained that I was just too scared to go through with the mastectomy.
“It’s OK, just do what you can do,’’ she said, explaining that I could have a mammogram every six months to make sure all was well.
I calmed down when she said that, relieved I didn’t have to go in for invasive surgery.
A glimmer of hope
My cousin Melanie booked herself in for surgery, but had to delay it when she found out she was pregnant. Mum refused the surgery, saying at 63 she was too old for it, but not long after they found a 7lb (3kg) tumour growing on her ovary. She had an operation to remove it, and thankfully has been given the all-clear. My other cousin Caroline had one child at the time and wanted another, so decided to have the operation after having her second child.
Amid all the negative, disturbing news, there was a glimmer of hope. In October 2009, both Rowena and Heather underwent a series of tests and got the all-clear – they had beaten breast cancer.
We wanted to celebrate so I booked a room in a local pub and had a party for them. I got a friend to make two cakes – with pink ribbons and their names on. We were all so thankful they were still with us.
But by Christmas 2009 something worrying began to happen. I went round to Heather’s house, and bumped into Pat and Rowena who were visiting. “Are you all right?’’ I asked Rowena. “She’s got a terrible cold and cough but won’t go to the doctor,’’ Pat said. “I’ll be fine, it’s just a cold,’’ Rowena laughed. But after Christmas when she was still not better, she agreed to go to the doctor.
After a check-up, the doctor said she had to undergo some tests because he suspected something wasn’t right with her lungs.
Not knowing what to expect, Rowena waited for the results to come in. And when they did a few days later, she had another shock: there was a nodule on her lung – she had lung cancer.
Rowena was told the lung cancer was terminal, and that if she had chemotherapy it would increase her life by only a couple of months, as she’d already had the strongest chemo available when she had breast cancer.
We were all devastated. It seemed so unfair. Rowena was in tears. She was in love with her fiancé John, who she’d known since college, and was hoping to marry him that year. “I really don’t know what to do,’’ she sobbed.
John, 33, hugged her close. “I’m sure you’ll get better,’’ he assured her.
Not wanting to delay any further, they got married on January 30, 2010, but her condition began to worsen soon after.
Rowena was in and out of hospital for the next seven months, but it was clear she was slipping away. In July 2010 she passed away
from lung cancer. The whole family was shocked by her death. Although we all knew she was really ill, we hoped she would pull through.
Meanwhile, I continued to refuse surgery, and had only the mammograms and MRI scans. But after one test early in 2011, the hospital called me saying they had found an abnormality in my breasts. I was terrified.
“Why didn’t I have them taken off ?’’ I said to Alan, kicking myself for not having undergone a mastectomy.
Scared and hoping it would not be the dreaded disease, I went in for more tests, and heaved a sigh of relief when the doctors told me that the suspicious mass they’d seen on the ultrasound scan was in fact the dye from all the tests they had conducted on me, which had collected in one area. It had since dispersed so I had nothing to worry about.
Although I was relieved, I knew I couldn’t continue like this. It was one scare too many.
Anything is possible
I decided to have the mastectomy, but I was scared as I had witnessed the trauma my aunt, cousins and sister had been through. After having surgery they had to spend almost 12 weeks recovering.
I didn’t want to go through a period of having no breasts. But I thought I had no choice, so I booked in for the surgery at Wythenshawe Hospital in Manchester.
But the thought of the operation just didn’t sit right with me. A few days before the scheduled op, I told my GP that I was very uncomfortable doing this and he referred me back to the surgeon, Dr Andrew Baildam at Wythenshawe Hospital. “I don’t want to have this operation,’’ I said. “What do you want me to do?’’ he asked. “I don’t know if this is possible, but I have an idea,’’ I said. “Why don’t you give me a breast augmentation, to stretch the skin, and then give me the operation to remove the breast tissue afterwards?” I asked.
Usually a double mastectomy involves removing the breast tissue completely. Then if the patient requests an implant, an expander is fitted. The expander is filled with fluid to stretch the skin to accommodate the implant and is in place for three to six months. Dr Baildam put his pen down and smiled. “It’s probably not possible,’’ I said. “It might be – in all my 15 years of performing mastectomies, I have never done anything like it, but I think it is worth a go. I’ll do it, if you are happy to be a test case.’’ “I trust you,’’ I said with a smile. “You came to me with a problem, but you have solved it yourself,’’ he said laughing.
“Well I’m a seamstress – we don’t cut anything off until it fits,” I replied.
So in October 2011 I had breast augmentation surgery, although they called it ‘reversal risk-reduction surgery’. I went from size 34B to a 34E. The operation was successful, and I was back at work within a week. Then on December 15, 2011, I had the operation to remove the breast tissue.
“It went perfectly,’’ Dr Baildam said. “The implant made a pocket, and I could take out your breast tissue without changing the shape of your breast.’’
I was so relieved, and recovered quickly. I was able to go back to work after four weeks instead of the normal 12 weeks of recovery. Since then Dr Baildam has offered the procedure to many other women.
Finding out so many members of my family had the BRCA1 gene has been very hard, but we are coming through it, and looking to the future with hope.
We feel like our lives have been given back, and we will be forever grateful. Now my risk of getting breast cancer has gone from 85 per cent to less than 10 per cent.
● Rachel White, 41, lives in Accrington, UK
Rachel poses for the BRCA Babes calendar 2014, which raises awareness about the breast cancer gene
Above: Rachel (left) with her sisters Lindsey (centre) and Heather two weeks before she had an operation to remove her ovaries. Left: Rachel thought of her husband Alan, and children, Zak and Zoe, when weighing up whether to have surgery to reduce her risk of breast cancer
Rachel enjoyed a holiday in Las Vegas with husband Alan for her 40th birthday in 2012, just 10 weeks after her double mastectomy