[Adele]
[I've been with my husband Robbie for 25 years. We have two children. My son, Rory, he's 13, and my daughter Madeleine's 11. Ten years ago, I was diagnosed with breast cancer when I was breastfeeding my daughter, and it turned out to be invasive ductal carcinoma. Basically, the first thoughts I had was, ‘Am I going to live to see my children grow up?’ I felt cheated completely.
At the end of the chemotherapy, I needed to go on some hormone therapy and at that point in time, I was offered the opportunity to go into a clinical trial. When it was offered to me, I realised that I was going to be able to not only have the best medical help and treatment that was available at that time, but I was also going to be assisting the researchers and that was a really big thing for me at that time, because what I was thinking about was having a future and it wasn't all about me that future. The future was about my children and my family and also people that I'd met throughout my cancer journey.
Basically, people I'd met in treatment rooms, in chemotherapy, in support groups, and we were all in the same boat. We didn't know how we'd got cancer. We didn't know why? We wanted to find a reason for why it had happened to us. It was one thing that I could control. I could control being proactive in helping people and helping myself.
Basically, a clinical trials nurse and I had a meeting at the beginning of the trial, and she explained to me that they would give me the medication, and then every 3 months I'd be mailed a questionnaire and all of that data would go back to the clinical trials and she would provide I was able to give an insight into what the person who has cancer is feeling and how the treatments that these people in laboratories are making affecting people.
So I'm still on that clinical trial. So basically they're still following me up. So I have a 10 year relationship with my clinical trials nurse. She's just amazing. She and I talk about what's been happening with me, how I feel about it. So it's almost like having your own private counsellor who actually understands you and understands what you're going through. And I'm just looking to the future for hope.
So you're actually not just helping yourself, you're helping lots of other people who are in the same boat as you. You're helping their brothers, their sisters, their mums, their dads, everyone in the community. And we wouldn't be able to find a cure for cancer if we didn't have these people who put themselves out there to be studied or to be involved in clinical trials.
The most important thing was the support that I've gained through being in the clinical trial. It's empowering to somebody to know that you're actually doing something positive when you're in a really negative space in life. I just want to help. I just want to do something. I didn't want to own the fact that I was a cancer survivor before, but now I'm like, I'm a cancer survivor and I can do this and I want to help.
I was 32 years old and still breastfeeding my youngest child when I found a lump in my left breast. Subsequent tests identified the lump as oestrogen receptor positive invasive ductal carcinoma breast cancer, and my whole world was turned upside down. After receiving treatment including lumpectomy surgery,4months of chemotherapy and 7 weeks of radiotherapy, I was clear of cancer. However, being a young woman without a family history of cancer and no lifestyle associated risk factors, although statistically my chances of survival were very good, I still felt that I wasn’t in control of my health outcomes.
The multidisciplinary medical team assigned to treat my cancer recommended that I receive hormonal therapy for the next 5 years. At this stage, I was offered the chance to become involved in the SOFT trial. This clinical trial assigned patients with a randomised selection of one of 3 different treatment methods – all of which were safe and the best treatments available for my type of breast cancer at the time. After considering the pros and cons of becoming involved in such a study, I decided that I had nothing to lose – in fact becoming part of this trial would only be of benefit to myself and others.
Firstly, I received the best treatment available for oestrogen receptor positive breast cancer in young women. My treatment was monitored regularly by a trials coordinator and my doctors. This support in the years following treatment was crucial to my wellbeing, as the regular contact with health professionals gave me the reassurance and motivation that I needed to keep maintaining mental and physical health. The clinical trials coordinator has been a constant source of knowledge and inspiration, and always someone to talk to in-confidence.
Furthermore, I have the satisfaction that the data that I provided to researchers has contributed to the understanding of the behaviour of my type of breast cancer. The research data that these trials provide is essential to determining the best treatments and outcomes for breast cancer survivors. It is not only a form of insurance policy for myself and my family, but for every woman that is at risk of being faced with this life changing disease.
The process of being involved in these trials is not difficult nor time-consuming. By participating in a trial, you will be rewarded with the sense of contentment through undertaking a very important role that contributes to the health of wider community. Your involvement is helping researchers to make a difference in the lives of others. It has been almost 10 years since my initial diagnosis, and I am very grateful for the opportunity that I have had to contribute to the wellbeing of past, current and future breast cancer patients.