PUBLISHED ON: 28 June 2019

Jo explains why she is sharing her voice in the secondary breast cancer survey, and why it’s important to share experiences of living with secondary breast cancer.

Jo took part in our Secondary Breast Cancer Survey

No one told me the signs of secondary breast cancer

I was diagnosed with secondary breast cancer in August 2016, 10 years after my primary diagnosis. I was told I had metastatic breast cancer in my liver. With those words, my whole world collapsed.

The signs and symptoms of secondary breast cancer had never been discussed with me after my primary treatment finished. I had been visiting the GPs and specialists for years with concerns about subtle changes that I now know were significant, but they were explained away on the basis that I was being paranoid because of my history with breast cancer.

I had been looking after my health, self-checking regularly and having yearly mammograms. But the cancer had spread and at no time did it return to my breast. 

Drug treatments are limited and many of us feel second rate

One of the most stressful things about living with secondary breast cancer is having to navigate drugs and treatments. Treatment options are limited and can face significant challenges becoming routinely available on the NHS. Many women like me cannot access the newest drugs, because we have already had first line treatment for secondary breast cancer.

When people don’t survive breast cancer, they do not ‘lose a battle’, they run out of treatment options. To know that options are available for some but not for others is truly a matter of life or death.

Following my secondary diagnosis, I had little specialist support, and no support for my family and friends. When I was diagnosed, I did not know one other person in the whole world with secondary breast cancer. To describe my experience as traumatic is an understatement, however thanks to introductions through Breast Cancer Care and Beast Cancer Now, I now know many people living with secondaries and their support, strength, knowledge and friendship have made me able to cope again. 

Secondary breast cancer is misunderstood

The view of breast cancer is often explained in simplistic terms and refers to those who survive and those who don’t. Yet it is much more complicated and generally misunderstood.

Many of us have been living with secondary breast cancer for several years and are living well, busy living our lives with a life-limiting illness. Yes, we experience side effects, pain and daily challenges physically, emotionally and psychologically, but we are living. We still laugh, have hopes for the future, many of us still work, have children, partners, families and friends and we contribute daily to society.

Having said that, median survival is 2-3 years and we need treatments that can allow us to live well for longer. Since my diagnosis I have personally lost nine friends to secondary breast cancer all in either their 20, 30s or 40s, most leaving behind young children; this is devastating and needs to change.

Breast cancer is not fluffy or fun. I’ve found that it scars people physically, emotionally and psychologically and it destroys families.

Without true understanding and honest conversations about secondary breast cancer, I feel it will never be a priority. While we are seeing some progress in developing new treatments, and improving care options for patients - much, much more needs to be done and we need to ensure secondary breast cancer is given the attention it deserves.

Together our voice is stronger

I believe we need to be more aware of and honest about secondary breast cancer.

There are an estimated 35,000 people living with secondary breast cancer in the UK.

Nearly 1,000 women in the UK die from secondary breast cancer every month and yet most people are not even aware of what it is (secondary breast cancer is when primary breast cancer cells spread to distant areas of the body, including the bone, liver, lungs, brain and skin). Awareness is key to early detection diagnosis and access to treatments.

We also do not know exactly how many people are living with the disease because data is not being recorded in full by Hospital Trusts. We urgently need to improve this so we can understand more about the support and treatments needed for people with secondary breast cancer.  The results from the secondary survey will highlight the issues faced by people living with secondary breast cancer.

It will help us all have a better understanding of those of us who live with secondary breast cancer, and the most urgent issues that need to be addressed. Whilst we are here and breathing, it is not too late to make an impact and influence change.

Please make your experience count.

Make sure your voice is heard and take part in the secondary survey.

Take our survey