I am part of a small group of researchers based at Imperial who seek to use new technology to further understand cancer of the vulva. We are very excited to have received funding from The Eve Appeal with which to do this research, alongside guidance from members of our support group: Visible Vulvas- a group of researchers, clinicians and patients- all working together to break down stigma surrounding vulval conditions.
Why is the work important?
Over 22,000 women and people with gynae organs are diagnosed with a gynaecological cancer each year in the UK. There are five of them: ovarian, womb, cervical, vaginal and vulval. Vulval cancer represents only 5% of all gynaecological cancers but for the people it affects, the impact can be devastating, with treatments being invasive and surgeries often having long term affects on their health and wellbeing. Vulval cancer is little-known and under researched.
The most common type of vulval cancer is vulval squamous cell carcinoma (VSCC), with around 1400 women and people diagnosed every year in the UK. It develops in one of two ways: either associated with HPV infection (around 30%) or independent of HPV and often associated with chronic inflammatory skin conditions of the vulva such as lichen sclerosus. Both types of vulval cancer develop from precancerous lesions- changes to the skin. Depending on what type you have, there is a different prognosis- the HPV associated vulval cancer is less aggressive and usually affects younger women and people with vulvas, and the lichen sclerosus associated vulval cancer tends to have a worse outcome.
It is still unknown how pre-cancer turns into vulval cancer in both types (HPV and non-HPV associated). This lack of information is reflected in the treatment options, which are often aggressive to avoid any spread of the cancer. This is one of the reasons we need more research into the earlier diagnosis of vulval cancer, when treatments can be less severe and cause less long-term effects. Women who have undergone surgery to treat vulval cancer often experience shame, stigma, and seriously altered sex lives as a result. Looking ahead to the future, this research represents the first step to earlier intervention, detection and treatment: all incredibly important factors to finding less invasive and more effective treatments for this disease.
What will we be doing?
With this grant from The Eve Appeal we will have the opportunity to carry out an initial study on samples of both HPV-related and HPV-independent vulval cancer. We will be using a new technology called spatial transcriptomics, which allows us to select specific areas from tissue samples and measure the gene activity. Spatial transcriptomics was named “method of the year 2020” in the prestigious Nature scientific journal.
With this data, we can build a spatial picture of the genetic changes between normal skin, areas of inflammation, precancerous lesions and cancer itself- building a complete picture of how this cancer develops. The significance of this technology being “spatial”- that is, addressing not only which genes are being expressed but where they are in relation to each other- is that it can begin to understand the highly complex relationship cells have with their neighbours. We can then start to unpick why precancer turns into cancer.
We hope this research will lead to us being able to pick up signs of precancer developing into cancer, so we can prevent vulval cancer from occurring. There are only a handful of gene expression studies in vulval cancer across the globe, and this will be the first using spatial gene expression.
Who are we?
This work will be carried out at Imperial College London, by myself and Dr Jackie McDermott. I am a molecular biology student with a specific interest in vulval cancer and this work will be undertaken as part of my Master’s degree thesis. Supervising me is Dr McDermott: consultant cellular pathologist specialising in gynaecology at Charing Cross Hospital. We have worked together throughout the duration of my undergraduate degree performing genetic sequencing on vulval cancer samples to begin looking for genetic alterations that may be associated with this disease. Dr Darren Ennis (translational research associate) will be providing us with day to day support and guidance at Hammersmith Hospital. It’s very important to us to involve women and people who have undergone treatment for vulval cancer at every stage of our research to inform and educate us: our co- investigators Mandy and Sandra are involved at every stage of our research. Their insights are something completely invaluable, keeping women affected by vulval cancer at the heart of our science.
Mandy’s Story
“I have lived with vulval disease for ten years after a diagnosis of vulval cancer in 2012. My experience of this disease has been a devastating one for my physical and mental health. After many, many surgeries l had to give up a job that l loved, l experience chronic pain, lymphoedema and have a supra pubic catheter and an ileostomy because of extensive nerve damage. There is very little understanding or support with different specialists saying different things.
“Throughout these ten years l have found myself explaining over and over again not only what this disease is but where the vulva is!! Why do we not know that we should be checking ourselves? I have a daughter who is 23 so l tell her and her friends to look and check what is normal for you. My hope is that with research will come greater awareness for the younger generation, so that checking your vulva becomes like checking your breasts.
“We need research into this forgotten cancer and disease so hopefully less women will go for years often misdiagnosed because doctors and nurses don’t know what they are looking at, and who end up treating us for common womens’ diseases and excluding the serious ones. Hopefully research will enable quicker diagnosis and referral to specialists leading for better outcomes and less mutilating surgeries.
“My hope for research into vulval disease is that no one will have to experience what l have over the last ten years. If it saves just one woman then the research is working. Crazy as it seems women around me that have a problem with their vulva come to me and ask ‘what should l do?’ I try to support them to go and get checked out because it’s a scary place on your own when you feel you can’t even talk about your vulva to a doctor.”
Visible Vulvas is a research and public awareness group established in 2018 to inform research direction by patient ideas and experience, as well as breaking down the stigma surrounding vulval disease. After holding meetings with survivors and patients in London and Birmingham, we’ve been working to bring women together and break down the stigma surrounding vulval conditions. We recently held a successful art exhibition and awareness event in Manchester and hope to do so again in coming years as our group grows.
We are really excited to have received this grant from The Eve Appeal and look forward to doing research that will hopefully improve the outcome for women with vulval cancer.