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Monday, 15 February 2016
I had to try and find the very best cutting edge treatments that were being trialled - Diane Brooks
I became a patient at The Christie over 14 years ago when I was diagnosed with breast cancer at the age of 36. It wasn’t unexpected as I had a strong family history of the disease and soon after I discovered that it was a genetic fault and I was in fact a BRCA2 carrier.
Breast cancer was always part of my family and that’s why I was always interested in being a part of the research and learning aspect of my disease. I knew it could be a huge game-changer in my family’s future health.
Following surgery, chemotherapy and radiotherapy I remained cancer free until the summer of 2008 when it returned. It was a day I had always dreaded but somehow knew would come, as my cancer was aggressive and I knew from watching my mum struggle, it was going to try and beat me too.
Once I had come to terms with the fact that I wasn’t going to be cured, I set about trying to ‘live’ with my particular type of disease. Always thinking about the lack of understanding and choices of treatment my mum was probably faced with, I had to try and find the very best cutting edge treatments that were being trialled. Thankfully being a Christie patient meant that I was in the right place.
I was lucky enough to be part of trials involving existing chemotherapy treatments that were being aimed at my particular type of disease, but it was in September 2010 that I embarked on my first Phase 1 Trial for an unlicensed drug. I thought it would be scary but in fact it was such a relief, despite the fact that I didn’t know how it was going to effect me, or whether in fact it was going to give me any quality of life.
I recognised that I was very lucky to be accepted onto the trial and that it was available to me at The Christie. I had done as much homework as possible on my disease and just felt that this was the right treatment for me to try at this time. I was so lucky that it did in fact give me three years of being able to get on with my busy life with my husband, four children and my career.
To know that you are contributing towards future cancer treatments that can have far reaching effects on others, gives me such a worthwhile feeling, and of course, I am also keen to invest in my family’s future, as they are all going to be affected by this hereditary disease in years to come. I want the doctors to learn as much as possible about our hereditary disease whilst I am alive, so I am always happy to put myself forward for appropriate drug trials in order for them to do their invaluable work.
Being a clinical trials patient has it’s ups and downs and can be intense at times, but the Phase 1 team is expert at guiding me through and helping me manage side effects, at the same time as gathering all their important data which will form part of future cancer treatments – it’s such a privilege to be part of something that is so much bigger than just me. I continue to marvel at how fast things are moving forward in research, and even though I am a small part of it by trying these new treatments, it gives me hope for the future.
I wouldn’t hesitate in recommending a patient to speak to their oncologist about clinical trials - “You don’t get if you don’t ask” is always my motto. However, you do have to fit certain criteria for each trial so it is never a done deal and you have to be realistic. It is important to follow strict guidelines with new drugs, but I have always felt in safe hands with the Phase 1 Team at The Christie, who will spend as much time as is needed to talk me through every step of the protocol attached to each trial. We always refer to them as our “hospital family” and we have got to know them very well over the years. In fact it says a lot when I have been there longer than a lot of the staff – they must be doing something right!
I will be celebrating my 51st birthday next month and yes, I am still a Phase 1 patient at The Christie, trying something new, with my husband, family and “hospital family” holding my hand and helping me through, but most of all I am still “living” with my inherited disease, and I continue to hope that many people in the future will benefit from the knowledge gained from research and clinical trials that I have been so very lucky to be a part of at The Christie.
The Christie’s NIHR Clinical Research Facility is a large, high quality, dedicated clinical research environment where our patients can participate in complex and early phase clinical trials. Around 400 clinical trials may be taking place at any one time. In 2016, the NIHR is celebrating ten years of funding and supporting clinical research in the NHS.