After being diagnosed with secondary breast cancer, Jen found herself having to adjust to a new normal. Even so, she refused to give in, and worked alongside Breast Cancer Now to help others in a similar position.
My name is Jen Hardy...
I’m 51 and live in Edinburgh with my husband, Rod, and my two border terriers, Millie and Finn. I’m mum to my wonderful daughters Erin (22) and Carys (20). My life now is very different from the one I had nearly 2 years ago. I was busy then, with family, friends and work. I worked hard and my career was on the up. My girls were older and self-sufficient, I could devote more time to the job I loved and was looking forward to working my way up the career ladder and spending more time with my husband, jetting off around the world and indulging in our love for travel and adventure.
My cancer and the drugs that I take to keep it under control have many side effects, the worst one for me is fatigue. This means that I am unable to work and have had to let go of the job I loved, the daily contact with my friends and colleagues and that sense of being ‘someone’. I now live a much quieter life, I have to pace myself and make sure that I don’t overdo it. Nearly 2 years on from diagnosis, and I am now in a better place, but it has been hard. So hard to accept my ‘new normal’.
My experience with secondary breast cancer
I was diagnosed with HER2 positive, ER+8, PR+8 secondary breast cancer on 18th October 2018. I had no obvious symptoms that I was aware of (although knowing what I know now, I did) and was waiting for the results of a CT scan to find out what the cause of my sore throat/paralysed vocal chord was. At the time, I knew what breast cancer was, but I didn’t know anything about secondary breast cancer, and the fact that whilst it was treatable, it was incurable. I would always have cancer.
My treatment has so far included 5 months of weekly chemotherapy and 19 sessions of daily radiotherapy. I am now on a maintenance regime of daily letrozole and intravenous Trastuzumab (Herceptin) every 3 weeks.
This regime will continue until one day, I will be told that my cancer is growing and that these drugs no longer work. I don’t know when that will be – it could be months, it could be years. But even then, I hope I will still have options – more chemo, different drugs, surgery. That is what those of us with secondary cancer live for – options.
One of the medications that would have helped me and given me 12-18 months extra to live was Pertuzumab (Perjeta). But because I live in Scotland and Perjeta was not available on the NHS in Scotland at that time, I could not access this life extending drug.
I wanted to do something to raise awareness of this injustice and to effect change so that others could benefit where I could not. So I worked with Breast Cancer Now to head up our Perjeta Now campaign.
BCN were amazing, making sure I was fully supported throughout the campaign. In January 2019 Perjeta was approved for use on the NHS in Scotland! What an achievement! What a team effort!
I know that having my voice and my story behind a campaign works
I am passionate about continuing to help BCN as I know how amazing the people that work in this charity are. I know that campaigning works. I know many (too many) people who have (or are affected by) secondary breast cancer. I know these people either in person, or online on Instagram and Facebook.
Each one of them is different and have different stories - when they were diagnosed, how they are diagnosed, what type of cancer they have, what treatments they have. I wanted to represent all of these people and do my best to ensure that secondary breast cancer is kept to the forefront of research, awareness and support.
So little is known about the experiences of people living with secondary breast cancer
Do we all have a dedicated cancer nurse? Can we access the best treatment and the support we need, regardless of where we live in the UK? Are there clinical trials out there that could help us, and help ongoing research and development for the future?
This survey will help us get a much better picture of the state of secondary breast cancer treatment and care in the UK. The information gathered will help us effect change. Change to the experience of being diagnosed with breast cancer, change to raising awareness about the symptoms of secondary breast cancer. Change to all aspects of secondary breast cancer, so that we can improve the lives of those living with this incurable disease.
It will give us knowledge and with this comes power. Power to go to those in charge and demonstrate the evidence that we have gathered. Power to convince, encourage and make change happen.
The more people that complete the survey, the louder we'll be heard
The more people that complete this survey, the more evidence we will have and the stronger our case for change will be. If we make this the biggest survey of its kind, it will make it so much harder to ignore us.
Secondary should not mean second best. Please take the time to complete this survey so that Breast Cancer Now can work to ensure that no matter where you live in the UK that your diagnosis, treatment and care are consistent, relevant and the best it can possibly be.