Becky Measures - Chesterfield

Becky, Wendy's daughter, has been involved with the Helpline since its inception. She has witnessed the daily calls, met many people herself and spoken to and empowered many. She has inherited a strong desire to see fair play from her mother Wendy, who founded the Helpline in 1996 and who has fought 100% for all those she has felt were treated unfairly. Becky is exactly the same. Becky followed her mum's footsteps and had a double mastectomy herself, age 24, after her cousin was diagnosed with breast cancer in her 20's. Becky has been helping on the helpline for as long as she can remember.

Lisa Shiers - North Lancs

Lisa is age 36. Three years ago Lisa had a double mastectomy with reconstruction as she had been found to carry a fault in BRCA 2. Her mum had been found to carry the gene fault some seven years earlier, but hadn't felt ready to find out until she was in her early 30's. The gene fault is thought to have come via her Grandad who had suffered with cancer of the stomach, his twin brother had had pancreatic cancer, their other brother breast cancer and their sister cancer of the cervix, all of the daughters of this generation had been diagnosed with breast cancer. Lisa's mum, not that unusually at age 52, but cousins, in their early 40's and the youngest of which 33. Lisa had already been in touch with Helpline and spoken with both Wendy and Becky, she found out about the helpline through her Genetics team and watched Becky's documentary around the time she was deciding whether to have the test or not. Lisa found speaking to and meeting other people in the same position such a big help and expressed a desire to speak with others and indeed has been doing so already over the past three years via her genetic counsellor, the Helpline, or through the online Forum BCPALs which Lisa helps moderate. As part of her decision to help others she made a photo diary of all the stages of her surgery as she had found very little in the way of realistic photographs when she was making her decision.

Andrea Cockburn - Middlesbrough

Andrea was diagnosed in 2006 with breast cancer and underwent subsequent treatment. Andrea feels fortunate..as her mum died of cancer at a young age and thus the genetics specialists said that although she was borderline for testing, because of her young age they would perform genetic testing. Indeed this was fortunate as it came back positive for a fault in BRCA 1 - but from her father's side of the family! Andrea then went on to have her ovaries removed and underwent a double mastectomy. Andrea says 'I want to be involved because if I can help someone with just one piece of advice that makes their life better, I feel I will have made a difference.'

Richard Horsley - Leeds
A FATHERS PERSPECTIVE

On Christmas Eve 2003 my youngest daughter Suzanne died at the age of 31 from secondary lung cancer and a brain tumour after a two year battle with breast cancer.
At the time of Suzy’s second mastectomy and the aggressive nature of the cancer, it was suggested the cause could have a genetic link because of a history of ovarian cancer from my mother’s side of the family. A few months before Suzy died she consented to a blood sample to start the exhaustive search to a possible link.
Almost a year later a genetic councillor visited our home to tell us they had identified the faulty  BRCA1 gene, a mutation from the ovarian cancer and the implication that my eldest daughter had a 50/50 chance of carrying the same faulty gene.
At no time was I prepared by anyone before the devastating news.

The manner in which the results were delivered was so clinical, an almost satisfaction identifying the faulty gene, a total lack of sensitivity or compassion. My feelings were of devastation, anger and fear for my other daughter Jill.

Jill had by chance seen a feature on TV about the genetic breast care helpline set up by Wendy Watson and her daughter Becky Measures.
With their invaluable help and guidance Jill was informed and mentally prepared for the genetic test which thankfully returned a negative result, she didn’t carry the gene. A huge relief to myself and the rest of the family.
It is only recently I have become involved with Wendy and Becky’s helpline. I only wish I had sought their knowledge and guidance earlier which would have helped me through my crisis. I would like to thank you both from the bottom of my heart for the help you have given my daughter Jill and wife Margaret.

It is imperative Wendy and Becky’s insatiable dedication to helping those in need is maintained and must continue.

Margaret Horsley - Leeds
A MOTHERS PERSPECTIVE

In the year 2001 devastation hit our family when my youngest daughter was diagnosed with breast cancer at the age of 29. My daughter had chemotherapy followed by a mastectomy and our hopes at this stage were positive for a full recovery. A year later when it was confirmed the breast cancer had returned and it was aggressive, suggestions were made of a possible genetic link from my husband’s side as there was a history of ovarian cancer from his mother’s side of the family.

I visited a genetic councillor with my daughter at St. James hospital in Leeds and was told of the procedures involved in the genetic tests but she decided not to go through this as there was enough stress dealing with the second mastectomy.

My daughter was a medical secretary in histopathology at Leeds infirmary and was well aware of the implications of the genetics for my other daughter so consented to the testing months before she died.
A year later a genetic councillor visited our house to tell us they had identified the mutation from ovarian cancer, the BRCA1 and faulty gene. We were told of the possibility my eldest daughter had a 50/50 chance of carrying the faulty gene and go through the same scenario. Even after the two years of pain and suffering and the death of my daughter the anxiety continued because of not knowing whether my eldest carried the faulty gene.
Desperate to find help we discovered the helpline run by Wendy Watson and Becky Measures, they invited us over to their home where we found the advice and help invaluable and put our minds at rest. At last we had found the help and support needed for my eldest daughter to go for the genetic tests which thankfully came back negative.
Thanks to Wendy and Becky we can now move on with our lives, I hope many other people will benefit from the invaluable help and support they showed to us. It is annoying that they have to spend so much of their precious time chasing funds to continue, instead of dealing with the important task of helping other people in our circumstances.

Jill Lowther - Leeds

My younger sister was diagnosed with Breast Cancer at the age of 29 years old with no other case of Breast Cancer in our family so as you can imagine a complete shock.

It was particularly aggressive and she died 2 years later on Christmas Eve.  In the last few months of Suzanne’s life a blood sample was taken by Leeds Genetics as they suspected a Gene Fault.  A year later after losing Suzanne a genetic counselor turned up at our home and informed us that she had a BRCA1 faulty gene, most likely a mutation from my Fathers side who’s Mum & her sister died of Ovarian Cancer in there 50’s. This now gave me a 50/50 chance of inheriting the same faulty gene ,which was completely devastating after everything we had been through. My Dad took a blood test and it was confirmed that he had the Gene Fault,  and his Non Identical twin brother did NOT.

Jen Brettell - Manchester

I lost my mum and auntie to breast cancer when I was 7 years old.  Taking into account that my grandmother had also died of breast cancer at a young age, I attended appointments with Gareth Evans who gave my dad the option  for a genetic test on me when I was 9 which came back positive for the mutation tp53.
 
I have attended the annual appointments with Gareth for as long as I can remember, finally opting for a mastectomy in 2008 at 23.  This was carried out at Wythenshawe Hospital where I now work having spent 6 years working in the Cancer Research Institute at Christies Hospital

Melanie Bowles - Barnsley

I was deemed at moderate risk of breast cancer with a 1 in 5 chance of getting the disease in my 40’s after four close relatives on both sides of the family had the disease in their forties. I presumed I wouldn’t be eligible for the treatment I wanted but after endless meetings with my consultant, psychiatrists etc, I had a bilateral prophylactic mastectomy with immediate reconstruction on the NHS nearly two years ago. I contacted the helpline because I felt there were certain things that the NHS couldn’t help me with – ie speaking to someone who had been through the same experiences. The support was invaluable and being able to talk to someone who knew exactly where I was coming from was extremely helpful.

Andrea Stevens - Nottingham

Breast cancer was always there in our family. My mother was 26 when she was diagnosed and she died when she was just 31. I was 7 when she died and my sister, Rhonda, was 9. We also knew that our grandmother had been just 26 when she had died of the same illness. No one needed to tell us that we were at risk. That was just obvious. Unfortunately, we had no idea what we could do about it. I saw a documentary about Wendy and I wrote to her. She was in touch straight away and there was someone who we could talk to, who understood exactly how we felt. She was amazing and was with us all the way. She battled the Health Authority for us and arranged appointments for us. She saw us through every step of the process and neither of us would have got through without her. We have both been able to get on with our lives. Wendy set up the helpline to help others in the same situation and I hope that we will be able to help her support others who have the same difficult decisions to make.

Rhonda North - Nottingham

Breast cancer was always there in our family. My mother was 26 when she was diagnosed and she died when she was just 31. I was 9 when she died and my sister, Andrea, was 7. We also knew that our grandmother had been just 26 when she had died of the same illness. No one needed to tell us that we were at risk. That was just obvious. Unfortunately, we had no idea what we could do about it. I saw a documentary about Wendy and I wrote to her. She was in touch straight away and there was someone who we could talk to, who understood exactly how we felt. She was amazing and was with us all the way. She battled the Health Authority for us and arranged appointments for us. She saw us through every step of the process and neither of us would have got through without her. We have both been able to get on with our lives. Wendy set up the helpline to help others in the same situation and I hope that we will be able to help her support others who have the same difficult decisions to make.

Diane Lucking - Leicester

My name is Diane Lucking and I live in Kirkby Mallory Leicestershire. I am married with two grown up sons.

My sister is Wendy Watson ( the founder of the helpline). I attended the family history clinic at Manchester and was one of the first people to take a linkage test to see if I carried a faulty Gene. Of the three family members taking the test at the same time I was found to be the only one not carrying the faulty gene and as a consequence cancelled the decision for preventative surgery.

The biggest bonus of my result was giving other family members the confirmation that we do have a 50/50 chance of not inheriting the faulty gene. 

Helen Cauldwell - Derbyshire

Despite undergoing genetic testing age 21, and finding she was a BRCA1 fault carrier, Helen went on to develop breast cancer age 29. Her family had developed breast cancer at all ages from 32 to 67. It had been hoped she might need to start taking steps age 30, however when Helen started with an initial mammogram, stage 3 aggressive cancer was found to already be growing. Helen thus underwent a double mastectomy with reconstruction. She is now 8 years on from her breast cancer.

Rachael Wilkinson- Hull

My mum was diagnosed with BC at 36 and died of secondary BC at 45. I was contacted last year by Leeds Clinical Genetics to advise that she had left a blood sample which could be tested for BRCA1/BRCA2. This was done earlier this year and a change was found in the BRCA2 gene which was an 'unknown variant'. The next logical step is for me to undergo the same testing, this is what I am currently waiting for.  The Helpline helped to chase up this testing for me and has been very supportive from the moment I contacted them after seeing the Dawn Porter documentary last year.

I feel it's imperative that the message regarding familial links to BC gets out there and that women (and men) have access to the support they need from people who understand and empathise with them rather than a nameless, faceless NHS employee who just quotes facts and figures at them.

Mandy Burroughes - Brighton

Mandy is in the throes of the whole decision making process herself. She is hoping to work on the Helpline when her own personal journey is nearer to completion. Mandy is frank about the toll this has taken on her and her family relationships, and has used the Helpline frequently as a friend who empathizes and understands ALL the issues. Mandy is unfortunately unable to make the Manchester Training day, due to holiday commitments, but is attending the residential course. Mandy currently works in the NHS.

Sarah Thornber - Manchester

After  finding out I had the BRCA 1 gene; I choose to have a risk-reducing double mastectomy at the age of 35.  The same year I was offered the opportunity to take part in a blood screening trial for ovarian cancer which I accepted because I didn't feel ready to have  a hysterectomy.  As my family history was mostly breast cancer and not ovarian cancer I participated in this trial but wasn't really concerned about this risk.  Then last year my results kept coming back as high and after further testing I found out I had ovarian cancer; I was 37!  I've had a full hysterectomy and am now going through 6 months of chemotherapy.

Having the genetic testing and participating in the ovarian blood screening trial probably saved my life as I had no symptoms and would not have known about the ovarian cancer!

A few years ago I completed a psychology degree and for my dissertation I researched why people choose to have genetic testing which was very interesting! I hope I can use some of my experiences to raise awareness and help others facing the very difficult life changing decision of having genetic testing.  

Helen Smith - Essex

Helen has been a constant helpline user and as such has also spoken to many others through the vast Helpline database. Helen is hoping to facilitate meetings and be a local contact point in her area.

Her niece has inherited the fault through Helen's brother. Helen has undergone risk reducing mastectomy with reconstruction.

Julie Parrish - Norfolk

Julie is currently undergoing risk reducing surgery/mastectomy. Julie has a gene fault and has relied upon the Helpline constantly through the past year.

Initially Julie found her 'breast cancer affected' relatives were not supportive of her decisions to undergo gene testing then her choice of surgical intervention, although her husband and children were 100% supportive.

Vicki Newbold - Chesterfield

I met Becky at an event in 2009, where she was raising awareness & fundraising.  This is where I first heard about the National Hereditary Breast Cancer Helpline and also a little as to who they were and what they were about.  They were short of a helper and I stepped in and since that day I have never looked back. I later met Becky’s mum, Wendy and they have both quickly become 2 of my very best friends, in fact I would class them as part of my family.
In the time I know them both, I have leant so much about the Helpline and the invaluable service that they provide.  I have no family history of Hereditary Breast Cancer but I have met some amazing people along my journey and am SO proud to say that I belong to their Team.

I help Becky and Wendy wherever and whenever I can and will continue to do this as long as I live as I truly believe they have helped and saved so many lives of women and men in their plight to rid this terrible disease.

John Squires - Derbyshire

John is responsible for the day to day maintenance of data IT systems and facilities.
He also takes responsibility for the integrity and proofing of our documentation and published material. His scientific & engineering background provides a sound basis for the development of a dynamic relational data-base. When this system is fully operational, it will prove to be an effective agent in the acquisition of the vital  demographic profiles of UK women who match the ‘moderate-risk’ classification.
He hopes to adapt this scheme further, by constructing an interpretive model, which may yield some fundamental data through the medium of descriptive statistics.