Since her breast cancer diagnosis in 2020, Kent-based trailblazer Donna Power has joined her sisters in raising awareness of cancer-causing genetic mutations, as well as setting up an empowering menopause support group
Only 37 at the time of her diagnosis, Donna requested genetic testing, as hereditary cancer and genetic mutations can make cancer strike younger. As it would turn out Donna had a genetic mutation known as PALB2, which impairs the body’s instructions to make a protein that repairs damaged DNA and stops tumour growth.
‘There wasn’t much known about the mutation I had,’ Donna shares, ‘and it was then I realised just how many other genes impacted breast cancer risk that I’d never even heard of. PALB2 is the third most high-risk mutation and can be passed down by the maternal and paternal lines.
‘Mine was passed down on my mother’s side and as with all mutations, there’s a fifty-fifty chance of offspring inheriting it. In our case, we had a 71 per cent lifetime risk of breast cancer. It also increases other cancer risks, including ovarian cancer, which though to a lesser degree has influenced my recent undertaking of a total hysterectomy.’
Considering the impact and significance of her own experience, this fuelled Donna’s determination to help pave a smoother path ahead for others who may someday undergo a similar situation.
‘The incredible work of Angelina Jolie going public with her journey brought BRCA to the mainstream and #NOTJUSTBRCA hopes to add to that,’ Donna says. ‘The movement aims to raise awareness of all genetic mutations, and other high-risk factors, including breast density. Our goal is that no one should have to develop breast cancer to find out they have a risk factor. Knowledge is power, no matter what someone chooses to do with that education.’
‘The support of my sisters has made all this possible, to take a traumatic situation and help change the path for others,’ Donna shares. ‘As all families impacted by breast cancer, we each have our own story, and my sisters have helped me to find joy and humour in the work we do together.’
Since its launch, #NOTJUSTBRCA has gained international recognition, raised public awareness and encouraged people to become their own health advocates.
‘We’ve lost count of the number of individuals the movement has helped so far,’ Donna says. ‘Much of our work consists of getting existing organisations and mainstream charities to do more. We’ve worked alongside many who are now offering more enhanced support in hereditary and genetic factors relating to breast cancer. This also includes our NHS and we’ve been delighted by their receptivity to improve the service.’
Donna and her sisters have worked alongside the NHS Genomic Service Alliance, upskilling breast care nurses to have more involvement in genetic testing and support for patients. They’ve also joined a series of key workshops and national educational activities.
‘It’s great the NHS is focusing more on this area and our support for this came from being seen on BBC Breakfast on the red sofa,’ Donna adds. ‘Few realise the difference made by being aware of these elements.
‘Breast cancer affects one in eight women and is the second most common cancer worldwide. Men can also have it, albeit at a lower risk, but I don’t think we talk about that enough. With an already high prevalence, I think it’s important to understand if you’re predisposed to any enhanced risk of cancer. This could be simply understanding your family’s history of the condition and being proactive if you have concerns. If we’d recognised the cancer in our family, as with many others we’ve known, we’d have gone to speak with our GP sooner.’
‘I think anything that can be done to forewarn and therefore forearm individuals, is a blessing and can help when it comes to dealing with a diagnosis,’ Donna says. ‘Learning of the genetic mutation as well as news of my breast cancer was a double whammy.
‘On top of that, I felt responsible for relatives that I had to inform about the genetic mutation. I could handle anything about me, but when it came to the implications for others that was tough. The results of the genetic mutation came mid-way through my cancer treatment, and knowing about this at the onset would have impacted my treatment path and decision-making. This is another aspect I campaign passionately about as I feel it’s vital to have all the relevant information before treatment commences.’
Additional struggles came for the Power family when they discovered Donna’s sister Jade also had the mutation.
‘I was devastated, yet also incredibly proud of her bravery,’ Donna says. ‘After watching me go through chemotherapy she made the bold decision to have a preventative double mastectomy immediately.’
When asked what the experience taught her and what message she’d pass on to others currently facing or undergoing breast cancer treatment, Donna advised asking for help as soon as possible can make a big difference.
‘Having worked in healthcare for most of my career, I equipped myself on all the pillars of health to get me through and maintained a structure relative to wherever I was physically and mentally,’ she says. ‘I think surrendering and asking for help is one of the greatest challenges, but it’s smoother when we can!
‘So many areas of your life change overnight following a diagnosis, including relationships. I underestimated how useful connecting with others in a similar boat can be. You need your people and not everyone close to you can relate to where you are.
‘Though truthfully what inspired me most was having a clear purpose. On a day when I wasn’t sure I’d make it through, I promised myself if I did, that I’d make a difference in the lives of others and alter their journey, so they wouldn’t have to take mine.’
As well as launching #NOTJUSTBRCA, Donna founded the Meno-Pause organisation (meno-pause.co.uk) which focuses on all areas of a woman’s life during menopause.
‘I mentor women and organisations to help support and empower them. I don’t believe it’s about just getting through the menopause, but thriving through it,’ Donna shares. ‘I’ve specialised in this area for many years and am now ironically in early menopause and very much must lean deeper into leading a healthy life as I can’t take HRT due to my breast cancer being hormone sensitive.
‘This being said, not all women need to fear taking HRT due to breast cancer. Unfortunately, much of the fear and stigma around this comes from a misrepresented study in the early 2000s which created a scare for women and doctors that lasted over a decade. The evidence today is very positive and for most women, the benefits far outweigh the risks.
‘A conversation with your GP or hormone specialist can help address any concerns. Much of the time it comes down to quality of life and whilst a lot can also be done without HRT for those who can’t take it, it’s important to make an informed decision.
‘Every woman’s menopause is individual and whether she takes HRT or not there’s many courses of action. It’s the perfect opportunity to take stock and live life the way you want. I love helping women navigate that.’
And Donna’s trailblazing work won’t be slowing down anytime soon.
‘We’ve got a full lineup this year with some exciting women’s brand collaborations, along with talks and events in corporate settings and the healthcare sector,’ Donna reveals.
‘Essentially, we want to continue to raise consciousness of being breast aware and understanding potential risks. People can find out more by following us on Facebook and Instagram and can direct others to our social pages who might need support.
‘For anyone out there going through treatment, my thoughts are with you. Cancer is one of the hardest things you can endure, but it also reshuffles all your priorities in life. Someone asked me recently if I would return to the person I was before my diagnosis, and the answer was no. I believe this is true for many.
‘An experience like that offers you an opening to become the person you were always meant to be. It completely shifted my mindset and now I know how important every day is, through living a life of purpose, reduced stress, and laughing as much as possible!’ I: @notjustbrca
