Started in, I think 1993 when, at the age of 40 my oldest sister, Jean, found a lump in her right breast – she had a mastectomy followed by chemotherapy – it was a shock to the whole family – but after a year she was well and back at work – life almost returned to normal. Jean and I joined a breast cancer support group – we made many new friends. We attended the National Conference for Self-Help Groups and kept up to date with what was going on in the “Cancer World”.
Then in 2001 our father became increasingly unwell – he was 74 and had COPD but we were shocked when we found that he had stomach/liver cancer – he died a week later.
On the day that Dad was diagnosed Jean told me that she had found a lump in her other breast, she had an appointment at the breast clinic, her husband was away, she wanted me with her, she wanted to keep it quiet from everyone else until she had the results – it was a very stressful time and worse when it was confirmed that she had cancer in her other breast. Another mastectomy and more chemotherapy followed.
Treatments had changed in the 8 years between her cancers – through research the chemotherapy drugs had improved – less toxic and better drugs to control the side effects – however still not easy going through treatment. All seemed to be OK again for a while but by 2003 it became obvious that she was ill – she had, what was thought to be secondary breast cancer. Further treatments followed.
Around this time the government decided to introduce Cancer Networks as services needed to improve – the UK survival rates were not great in the international league tables. The Cancer Care Alliance was formed – they wanted patients and carers to be involved to shape the new cancer services that would develop. Jean was interested but too ill to attend meetings etc. so persuaded me to join. Over the next 3 years being involved helped our family massively, in three ways – our region became one of the pilot areas for the Genetic Service, we had more knowledge about the new services that were available, and we helped shape the new services from our past experience.
Jean was very interested in the genetics side – she was able to arrange for herself to have a diagnostic post-mortem when she died in 2006. This was of course no use to her, but vital to us – her siblings and her daughter, to be clear what had caused her death. It was established that she had died from ovarian, not breast cancer.
We three girls were seen by the Genetics Service – myself and my sister, Anne were immediately put on to a breast screening programme and a research project for cervical screening. Anne and I and Jean’s daughter, Helen elected to have genetic screening – it took a year to get the results – Anne and I both had the BRCA2 gene – Helen was clear. Within weeks of the results Anne and I both had our ovaries removed and continued on the Family History Breast Screening programme. Again, through research the screening programme was adapted as more data was gathered.
By 2015 I was on yearly screening and got the news that I had been dreading for 8 years – I had breast cancer in my left breast. Because of my BRCA2 status it was decided to do a bilateral mastectomy – I was also offered an immediate reconstruction, which I accepted gratefully. After the operation, when the pathology report came back, my tumour was much bigger than either the mammogram or MRI scan had shown and I also had cancer in my right breast – chemo., Herceptin and hormone treatment followed the extended diagnosis.
Because cancer had hit our family again, Anne decided to take up the offer that we had previously had of prophylactic mastectomy – an incredibly brave decision – also her daughter, Shannon and our brother Edward decided to have genetic screening. It was a difficult day going for the results of their tests – sadly Shannon also has the BRCA2 gene and will have difficult decisions to make in the future. Thankfully Edward does not have it.
Anne had to wait two and a half years for her mastectomies as it is classed as elective surgery – her surgery took place in April 2018 – the pathology, once again, produced bad news, she already had breast cancer – despite a clear mammogram in November 2017.
Our journey is not over!
I originally wrote this on 24th January 2019 so am now updating it on 3rd February 2022
At the beginning of 2019 my body started to reject my left breast implant and for the next five months both the breast team and, myself (and my husband, who was amazing) fought hard to get my body to change its mind – but after I finally made the decision to give in and had both my implants removed. It was the right decision for me, I am happy with the result.
Anne is doing well too. Shannon will have the support of the genetics unit and at the right time will be on a screening programme.
Our story, though horrifying, could have been much worse if we had not benefited from the research which underpinned the setting up of the Cancer Genetic Service and the Family History clinics which look after people like us.
We will be eternally grateful that we had the opportunity to have yearly screening and to have our ovaries removed. We hope that research will continue so that Shannon may have other alternatives to avoid breast cancer.
Throughout our journey we had wonderful support from the breast teams at Bishop Auckland Hospital (Jean) North Tees Hospital (myself) and RVI in Newcastle (Anne) and Macmillan information centre at North Tees who started a Craft & Chat group which helped me regain my confidence and again brought new friends.
I think the wonderful people I have met throughout this journey have compensated for all the negatives. I think we as a family have emerged stronger and without a doubt wiser. And we have learnt to be able to accept help from each other and other people too.
We are telling our story to raise awareness of the value of research and the value of the Genetic Service. Also to thank the amazing breast care teams.
Mary Sayers
3rd February 2020