Tracey and Elizabeth were both diagnosed with breast cancer during the pandemic and agreed to share their experiences with the Health and Social Care Select Committee’s Expert Panel as part of its evaluation into the government’s commitments on cancer services in England.
Tracey and Elizabeth were both diagnosed with breast cancer during the pandemic and agreed to share their experiences with the Health and Social Care Select Committee’s Expert Panel as part of its evaluation into the government’s commitments on cancer services in England.
Tracey (51, from Milton Keynes)
A long wait
In June 2020, I found a grape sized lump in my breast. As I’d had a cyst in the same place a few years before, I wasn’t concerned that it was anything sinister. I made a mental note to keep an eye on it and if it was still there at the end of the month I’d go to the doctor.
By that time, it had grown and was starting to hurt, so I tried to get through to the doctor. I would ring daily, sometimes for hours on end for the next two months. Eventually, in August, the phone was finally answered. Despite my lump being twice the size it was when I found it, I was told that September was their earliest appointment.
I often wonder if that appointment had not been delayed so long, would I be in the position I am now
After an initial call with a doctor, I was referred to the breast care clinic. Two weeks later, I finally had a mammogram and an ultrasound scan.
What was really devastating was that I was on my own when I was given the devastating news that I had cancer! I couldn’t cry; I had no one holding my hand, I couldn’t hug anyone for comfort.
As you can see from my story, my experience was awful and I was actually pretty damaged by it. I don’t want anyone to repeat my tale, or have anything like the experience I have. Being on the panel allowed me to share my story which would hopefully give the medical profession a heads up on what can go wrong and how far-reaching those errors can be for a patient, which means they can spot the signs of failure and stop it before it happens.
The NHS is brilliant at looking after us from a scientific stance, but it’s us patients who have the experience of being on the receiving end of all that knowledge, so it’s important that we give our input - good and bad.
Experience of the panel
The panel was beautifully organised. We were kept informed every step of the way, so there were no surprises, awkward moments or wasted time. We were sent questions in advance so we could prepare our answers.
We introduced ourselves to each other, and then the expert led with the questions, which we were given the chance to answer. A few days later, the transcript of our replies was sent to us so we could confirm it conveyed what we had actually said.
I feel really honoured to have been allowed to take part. I know my contribution will make a difference, as I was able to highlight some of the flaws with the current system. Many of the other participants had good experiences, which I’m pleased about, but as I already said, errors do occur and I’m pleased I was allowed to share my story.
Elizabeth (41, from Dorset)
I didn’t see it coming
I was diagnosed during my first year of headship at the local primary school. It was during the first lockdown of the pandemic. I was experiencing some breast pain, was extremely tired and my running time was slowing down, but I had no cancer in my family so I dismissed it.
At first, I was told that I had a large tumour, which was treatable, but when I saw my oncologist, they told me that I had two, and the cancer was massive. They threw the book at me; I had chemotherapy, mastectomy, radiotherapy and I’m now on hormone treatment and bisphosphonate infusions.
It was so hard. I had to go to chemotherapy and scans on my own, and the chemo was so gruelling I had to finish after four treatments instead of six. It made me so sick, it gave me PTSD.
Waiting for breast reconstruction surgery
I was told I would have to wait a year for breast reconstruction. I was disappointed but realised my body needed to heal and that I could mentally wait that long. I was told that, due to radiotherapy after my mastectomy, I couldn’t have reconstruction immediately.
I didn’t want to wait for my one-year follow-up appointment, so I booked to see my consultant privately nine months post-mastectomy. However, he said that, due to radiotherapy, I wouldn’t be able to have an implant on its own, and there were huge waiting lists for other procedures (as long as 2-4 years!).
I felt so gutted, especially as I’d seen women online who had better options after their own mastectomies.
My consultant referred me to a private plastic surgeon in Portsmouth. I was ultimately added to the NHS list. It was supposed to be a seven-month wait, but could now take longer due to COVID. I hope I get it this year. It’s just not considered a priority.
Experience of the panel
I wanted the opportunity to share what it was like having cancer and treatment during a pandemic, so that the government can make some positive changes to the NHS.
I found the experience really positive. It was great to meet other people who have had cancer and professionals who were interested in hearing about our experiences. I hope that my contribution will help others facing similar experiences in the future.
What’s next?
The Health and Care Select Committee’s Expert Panel published its report at the beginning of April, which rated government progress as ‘inadequate’ against commitments made to improve cancer services.
This is the first time the Expert Panel has given an overall rating of inadequate. The Panel specifically highlighted the lack of long-term planning and investment in the cancer workforce, which is something we alongside many other cancer charities have been campaigning for.
We want to create as many opportunities as possible for the insights and experiences of people affected by breast cancer to be shared with government and help shape decision-making. In order to do this, we are currently asking people who are either awaiting or have undergone breast reconstruction to share their experiences by taking part in a survey.