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My fears that I've past on a cancer gene to my children

Published 13/10/2016

Julie says she is doing well
Julie says she is doing well
Family time: Cameron, Leah, Courtney with baby Cooper and Julie Skates
Staying positive: Emily Stanton started running to her treatments
Emily Stanton taking a selfie with from left, Rhys, Liam and husband Hedley

With Cancer Focus Northern Ireland's In Pink campaign well under way Marie Foy talks to Julie Scates from Castlereagh and Emily Stanton from Belfast about coping with the BRCA1 gene.

Breast cancer is the most common cancer in women in Northern Ireland - every year 1,200 are diagnosed and 300 lose their lives.

Cancer Focus NI has been funding research at Queen's for a number of years and has just launched a new campaign called In Pink to encourage the public to do something pink to help continue their work into this devastating disease.

The In Pink campaign is being run in partnership with MediCare Pharmacy Group.

Suzi McIlwain, community fundraising manager for Cancer Focus NI, said: "Just £200 will fund half a day's work by our researchers who could make a huge difference to the future of women who carry the mutated BRCA1 gene - which Angelina Jolie famously carries and who opted for surgery. Women with the gene have an 85% chance of getting breast cancer in their lifetime.

"Even the smallest donation will help our researchers explore better ways to prevent breast cancer and find alternative treatments for high risk women who, at present, have to consider having breast removal to drastically lower their chance of cancer.

"We urgently need you to help by organising or supporting a local In Pink fundraising event."

Cancer Focus NI has come up with a whole host of fundraising ideas - from wearing pink for a day, week or the whole month and get sponsored or a get together with your friends, family, school, community, group or club to have a catch up over a coffee and some cake with pink icing or go all out with an In Pink Party.

Among the events the charity is organising is a fun Pink Colour Run at Victoria Park, Belfast, on Sunday, October 30. Check the Cancer Focus NI website for more details, www.cancerfocusni.org.

Whatever you do it's all about raising vital funds for life-saving research for women here. We talk to two women about what it's like to have the BRCA1 gene and why medical breakthroughs are so important.

‘Fifteen people in my family circle have the rogue cancer gene ...’

Julie Scates (42), from Castlereagh, who lives with her partner Steve Richie, has BRCA 1 and has advanced cancer. She has three children, Courtney (24), Cameron (18) and Leah (12). She says:

I was diagnosed with stage 4 primary peritoneal cancer (PPC), a form of ovarian cancer, when I was 39. It had spread to my ovaries, liver, bowel and diaphragm and my prognosis was pretty poor with only weeks to live.

I attended a specialist clinic, Christies in Manchester, for radical surgery, which went very well. My oncologist said he thought the cause of my cancer was highly likely to be genetic. It was just awful knowing that I may have passed it on to my children. That was probably my lowest point ever.

I was started on chemotherapy and referred for genetics testing which confirmed I was a carrier. I had more surgery and a second round of chemo and got back on my feet. Right now I'm having a few months rest from treatment before more chemo and possibly a double mastectomy.

I had genetic counselling for support and they were fantastic. It took a while for me to be able to tell my family - I felt so guilty, but the counsellor helped me to prepare.

We weren't aware of any family history of the condition but my grandmother had died at 44 from, we thought, cervical cancer and we started to ask more questions.

My mum was tested and she came back positive, which was another shock. She is one of eight children, so that opened up a whole can of worms. Then everyone started to dig into their memories and we are pretty certain my grandmother probably had it too.

Next my daughter Courtney tested positive - another major blow. She has been getting information on fertility so that freezing her eggs might be an option for her. My son and younger daughter will be tested when they are older.

A lot of family members have now been tested. It's been like a domino effect - already 15 people in the wider family have found out they have the gene, including one of my two brothers. It was a crazy time and I was going through a tough time with my own cancer too.

I used to have a very stressful job in recruiting, travelling a lot. In some ways I still feel in work mode and that I'm putting all that energy into dealing with this disease.

I'm doing well and I'm feeling good. I am a Christian and get strength from that. God does work miracles and you have to believe it's possible. God and medicine provide a full and complete healing.

I have done some peer mentoring with other cancer patients and am in an American-led drugs trial. I am classed as terminal so I am looking at trials that use life-extending drugs.

My children have used the charity's family support service, which has helped them come to terms with what is happening. As I'm so much better at the moment, Steve, who has been a rock, has been struggling with my prognosis and is seeing a Cancer Focus NI counsellor. Courtney has taken part in Cancer Focus NI's Up the Lagan in a Bubble event to help raise funds.

I attended a BRCA conference which gave me hope and comfort for the future as they talked about various areas of positive research that are going on and there are lots of different options for diagnosis and treatment in the pipeline.

People need to be more aware about BRCA - my cancer was too far gone before I knew anything about it, I was on a back foot from day one. And I want to stress the importance of research, which is why I'm backing the Cancer Focus NI Pink campaign."

‘I ran from my home to hospital for my Radiotherapy treatment’

Breast cancer patient Emily Stanton (45), from Ballyhackamore, east Belfast, is married to Hedley (50) and they have two boys, Liam (10) and Rhys (7). Emily, who is finishing a PhD in politics, is urging the public to get behind the Cancer Focus NI In Pink campaign to raise money for breast cancer research at QUB. She says:

I decided to get back into running last year after I was diagnosed with breast cancer. I had surgery in June last year followed by five months of chemotherapy before radiotherapy treatment, which finished in January.

I wanted to turn a negative into a positive by running the eight miles to and from my home to my radiotherapy sessions at Belfast City Hospital.

Running to my treatment was just one way I fitted my training into a busy day.

Ten years ago I ran the Baltimore marathon and when I found out I had cancer I thought I’d set myself a personal goal to run the Belfast marathon for Cancer Focus NI to give me an incentive to get fit again.

While I didn’t break any speed records, I was pleased to be able to complete the marathon under the six-hour mark — my own personal goal as I was just so new into my training after the experience of going through treatment.

I was lucky to have a relay team running with me for support and a great crowd of supporters dotted throughout the city to cheer me on.

I’m still keeping active and keeping up my fitness with running as well as cycling — who knows, maybe a triathlon will be next.

Cancer Focus NI has provided me with tremendous support, so I was thrilled to be able to raise funds and give something back to them.

Their family support service has given Hedley and I the courage to talk openly about cancer with the children and they gave us practical and emotional support and guidance. I’m so appreciative of all the free help that they provide.

The charity has a wide range of other services for patients and their families and I hope to join the Sing for Life choir (a partnership with the Crescent Arts Centre) and their breast cancer support group.

While my prognosis is good, I’m a realist. I’m aware that a re-occurrence is a possibility but I take comfort knowing I can use these services at any time — now and in the future if I need them. Research is also a vital part of the work that the charity does, which is why I think it is extremely important to support this campaign.”

  • For details on how to organise an In Pink event with Cancer Focus NI and get a fundraising pack visit cancerfocusni.org, tel: 028 9066 3281 or email fundraising@cancerfocusni.org. If you’re worried about cancer call the Cancer Focus NI free Nurseline tel: 0800 783 3339

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