Louise's Story - A Candid Look at Preventative Surgery

Date: 23 July 2018

When Louise Birdsall, from Collingham, found out she carried a genetic mutation that increased her risk of breast and ovarian cancer, she knew she had to take action. Louise has shared her experience with Yorkshire Cancer Research to encourage women with a family history of cancer to request the potentially life-saving test.

Louise, 48, had a strong family history of breast cancer. Her mother, grandmother and great grandmother all had breast or pancreatic cancer during their lives. Louise’s mother had breast cancer when Louise was just three years old. Following a mastectomy and radiotherapy she made a full recovery. 

Louise found a lump in her breast during her 20s. It was removed and tests showed it was benign, meaning it wasn’t cancerous. Following this, she was screened annually through the Family History Breast Team at St James’s University Hospital, Leeds. 

Louise said: “The consultants and their teams were brilliant and I felt I was being looked after."

At the time of Louise’s lumpectomy, BRCA gene mutations had not yet been identified by scientists. But following their discovery in the mid-1990s, knowledge of the faults and their link with hereditary cancer became more widespread. Louise was referred to a genetic counsellor after BRCA testing became available through the NHS, but she was told she was not eligible.

BRCA genes are known as ‘tumour suppressor genes’. They repair damage in cells and prevent them from growing and dividing too quickly. If these genes don’t work properly, cancer can develop. Women with BRCA mutations are significantly more likely to develop breast or ovarian cancer than women without the mutations. There is also an increased risk of pancreatic cancer and melanoma, the most serious type of skin cancer.

There are a number of options available for women with a positive BRCA result. These include chemoprevention, which involves taking medication to lower the risk of cancer, or preventative surgery which can include a risk-reducing double mastectomy, the removal of the ovaries and fallopian tubes and sometimes the removal of the uterus (womb).

In 2009, Louise was referred for genetic counselling again, but still wasn’t eligible. 

Louise said: “They use a scoring system to determine eligibility for the BRCA test and I couldn’t reach a high enough score, even though there were three women with breast cancer in my immediate family and one had pancreatic cancer as well. Because my mum was still alive at that time and the death certificate of my grandmother and great grandmother didn’t say cause of death was breast or ovarian cancer my score was too low.”

Things changed when Louise lost both her parents to cancer. Her father died in 2012 from secondary liver cancer, which was likely to have started in the pancreas. Two years later, her mother died of secondary brain tumours, which were believed to have spread from either the breast or pancreas.

The next time Louise saw her breast cancer consultant, they discussed her options and decided to request the BRCA test again. If Louise did have the BRCA mutation, she would need to decide whether to have chemoprevention, which could have side effects, or undergo preventative surgery.  They also referred her to a gynaecological oncologist to discuss screening for ovarian cancer and preventative surgery, which would reduce her risk of both ovarian and breast cancer.

Louise said: “Both my parents had very quick illnesses. My dad started with severe tummy pains and was admitted to hospital. We were told he had secondary liver cancer and it was terminal. He died exactly one month after that first pain. 

“It was so hard losing my parents as I was so close to them and they meant the world to me. I couldn’t stand the thought of being in their position and having to leave my family. Ovarian and pancreatic cancers are hard to detect and screen for. I was worried that if I did have the BRCA mutation I could be diagnosed with cancer at a late stage when it would be more difficult to treat. At least I was fortunately having yearly mammograms.”

Six months after the death of her mother, Louise saw the genetic team again, but unfortunately she still wasn’t eligible for the BRCA test. 

Louise said: “I saw the gynaecological oncologist regularly after that. I had blood tests and scans to ensure that I didn’t have ovarian cancer. We also discussed my age and the fact that the risk of breast and ovarian cancer was increasing.

“We decided that I would have my ovaries, tubes and uterus removed, since my risk was high anyway. My biggest worry about this was going into surgically induced menopause, but my consultant said that as long as there was no cancer I could have hormone replacement therapy to relieve the symptoms. 

“Not having my mum to talk to about it was extremely hard. But I knew I didn’t have a choice but to have the preventative surgery. Chemoprevention was not an option for me.”

In December 2017, Louise underwent BRCA testing through a private company recommended by her consultant.

“If I was not BRCA positive then I would continue being screened before rushing into the surgery, but if I did have the mutation then the result would move things along more quickly. Knowing I had the BRCA fault would confirm I was taking the right course of action,” said Louise. 

“It was a strange and quite unsettled period for me as I waited for the results to come back. When I got the call confirming I had the BRCA2 mutation it made all the hypothetical conversations real. Choices needed to be made.

“I felt an overwhelming sense of guilt in case I had passed the gene on to my boys, but the genetic counsellor from the private testing company explained that my decision to get tested meant that they would be automatically tested when they were older. They told me that knowledge is power, and knowing about the mutation could ultimately save the lives of not only my children and future grandchildren, but also my siblings and their families too.”

Louise underwent a double mastectomy and breast reconstruction, with implants fitted under her chest muscle, in March this year. The surgery included the removal of her nipples, as keeping them can leave a small residual risk of developing breast cancer. 

Louise said: “Agreeing to surgery wasn’t easy but I had no doubt it was what I had to do. We make choices every day, often not really giving them much thought. This was different. I was perfectly healthy. Making this decision would mean major surgery and it would take a long time to recover. It would lead to changes in the way I looked, how I perceived myself as a woman, and it would affect my family as I would be unable to carry out the simplest tasks and wouldn’t be able to drive for weeks.

“I talked to my husband, family and consultants who were all fantastic, but I was the one who had to make the final decision. In the end I told myself that I just had to get on with it. I had an up to 85% risk of developing breast cancer and up to 30% chance of getting ovarian cancer. Luckily I now had the opportunity to reduce my risk of developing these cancers. 

“There are moments when, even though you have a great support network around you, you feel alone. It’s your body and at the end of the day you are putting yourself through major surgery.”

Louise returned home from hospital two days after her mastectomy. The wounds were dressed and plastic tubes were inserted to drain away excess fluid into bottles. 

Louise was given two heart-shaped cushions to help with sleeping and two bags with long handles to carry the drain bottles. The cushions and bags are made and donated by individuals and groups like Mastectomy Machinists - Fighting Cancer one Stitch at a Time, which can be found on Facebook. 

Two weeks after her surgery, Louise had her dressings and drains removed.  

“It was a lot harder than I thought it would be,” Louise admits. “When I reached the point of having more good days than bad, I thought ‘wow, I’ve done it’. 

“It was very painful, the drains got in the way and I had to be careful not to catch them as they could be pulled out. I couldn’t lift my arms above shoulder height, so simple tasks were difficult, and I was incredibly tired. The first time I had a shallow bath after the dressings and drains were removed, I couldn’t turn the light on. I didn’t want to look at myself. 

“I do feel different. I’ve put on weight and it feels like there is something in my breasts that shouldn’t be there. I try to look at the positive, but I’ve had days when I’ve felt down. However, it does get better. My husband said when he saw me after the surgery it was like a weight had been lifted off me. My risk had been significantly reduced.”

Louise has delayed having her ovaries, tubes and uterus removed until later this year while she recovers from her mastectomy. 

She added: “I’m lucky to have an amazing support network to help me. My husband, brothers and friends have been incredibly supportive. My boys have been fantastic. When we told them about the surgery, they told me to do whatever I needed to do to stop getting cancer. 

“It’s been very emotional. I know my parents wanted me to have this surgery, to have the choice that others have not had. I have no regrets.”

If you have a family history of cancer and you’re worried, please speak to your GP. You can also find support on Facebook by searching for BRCA1/BRCA2 & High Risk Support UK. 

 


ENDS

 

Contact:

Nikki Brady, Senior PR Officer, Yorkshire Cancer Research. Tel: 01423 877228. Email: nikki@ycr.org.uk

Notes to Editors

  • Harrogate-based Yorkshire Cancer Research was founded in 1925 and is the largest independent regional cancer charity in England (Registered Charity 516898). We are not part of a national charity.
  • We are committed to reducing the devastating impact of cancer on the lives of people living in Yorkshire.
  • Our mission is to work in partnership, fund research and support initiatives that will help people in Yorkshire avoid, survive and cope with cancer.
  • Current statistics show that 575 people are diagnosed with cancer in Yorkshire every week. Incidence and mortality rates are higher than the England average due to social deprivation, post-industrialisation and lifestyle choices but also availability of healthcare services and difficulties accessing early diagnostics, clinical trials and the latest treatments.
  • We aim to:
    • Be the leading authority on cancer in Yorkshire, understanding the problems and priorities in the region and sharing knowledge with partners.
    • Raise awareness of cancer and how to prevent it by working in local communities, schools and colleges, sports clubs and with other health-related organisations.
    • Promote screening programmes and fund research that can improve the diagnosis of cancer so we can detect and treat it at the earliest opportunity.
    • Invest in innovative research projects at every stage of a cancer patient's journey.
    • Campaign for fair and equal access to the very best healthcare services and a greater share of the money spent nationally on research.
  • For further information, please visit www.yorkshirecancerresearch.org.uk or follow us on Facebook or Twitter.

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