In 2018, aged 42, I was diagnosed with early stage, multifocal lobular breast cancer. I had a wide resection and one month of daily radiotherapy before commencing Tamoxifen. I refused the recommended ovarian function suppression injections as I was concerned that the impact they would have on my bones, body and mind might not be worth the advantages, as an early stage patient.
In May 2019, eight months after completing my breast cancer radiotherapy, I was diagnosed with high risk Multiple Myeloma. Initially believed to be fairly early stage, the myeloma devastated my bones in a window of just weeks even as my treatment worked fast and well. I completed induction therapy in November last year, and had a Stem Cell Transplant in December. I am currently in remission. I take maintenance drugs I source from India as they are not available on the NHS for cost reasons, and because their medical efficacy has been proven they can no longer be covered by the Cancer Drugs Fund.
Experience with Cancer Research
I feel strongly about the need for patient advocates to identify and amplify key messages that many patient communities may not be aware of, particularly about their less ‘standard’ cancers. When I was undergoing treatment for invasive lobular cancer it astonished me to see that the entire treatment model, from diagnosis to follow up monitoring and recurrence modelling etc, was designed for the specific characteristics of invasive ductal cancer – and many GPs and even oncology personnel did not seem to be aware of the clearly defined differences between lobular and ductal cancers, not least around metastasis locations and recurrence timelines.
I have a growing understanding of how the UK research to market process works that I would like to deepen further. As a high risk multiple myeloma patient that recently completed first line treatment I was informed that I would benefit from maintenance therapy. However it is not currently available on the NHS for cost reasons. I have had to learn quickly about the role of NICE, drug patents and their generic cousins, and the associated Intellectual Property issues. I follow initiatives to accelerate patient access to drugs that have not necessarily completed the full formal process that sees them available on the NHS. I also import my own generic maintenance drugs from India as I cannot afford the vast cost of the patented medication in the UK.
In my pre-cancer life with the United Nations, I spent many years designing and commissioning research to inform service provision around basic services provision such as health, shelter, and economic infrastructure. Building in service user feedback and engagement to improve design and delivery was a cornerstone of my responsibilities and does, I think, translate well to PPI engagement and ensuring good practice and common sense approaches strengthen trial and research designs.
I am also a sole parent of a very young child so bring a particular interest in the logistics of cancer treatment and care for patients with practical factors that can make simply showing up for treatment a challenge.
I am currently providing PPI support to:
The Royal Marsden – lay summary reworking, trial design inputs on a nuclear medicine proposal intended to reach prostate and Multiple Myeloma patients.
Leeds University – lay summary and design inputs, and member of the Safety Review Committee for a Multiple Myeloma platform trial.