Fiona Macrae: my experience with secondary breast cancer

Fiona was diagnosed with secondary breast cancer 15 years after her primary diagnosis. The length of time between her first and second diagnosis meant she found it hard to get her concerns heard when they were initially raised - her symptom was a persistent cough.

However, having started her own insurance company, dedicated to providing accessible priced insurance for anyone following a cancer diagnosis, she was acutely aware of the symptoms and was able to advocate for herself. Here she talks about her experience and the changes she feels need to happen to support those with metastatic breast cancer better.

Do you know the signs and symptoms of breast cancer?

When were you first diagnosed with cancer and what were your symptoms?

I was diagnosed with primary breast cancer in February 2005, when my son Cameron was five months old. During my pregnancy I queried changes in my breast several times but kept being told I had nothing to worry about. After Cameron’s birth the ‘thickening’ in my breast didn’t improve, so I went back to the GP again and was finally referred to the one stop breast clinic for tests, I was diagnosed that day.

When were you diagnosed with secondary cancer and what were your symptoms?

I was diagnosed with secondary breast cancer in July 2020. I had a cough, which wouldn’t go away. I had been to the GP in June 2019 about it and was sent for an X-ray, which came back clear. The cough persisted and I was referred to a respiratory consultant in late 2019, and diagnosed with asthma. However, the cough just wasn’t improving and on a call with the consultant during lockdown, she was so concerned she sent me for a CT scan which showed nodules on my left lung. I was then sent of a PET/CT scan and was diagnosed with secondary breast cancer which had spread to both lungs and also to my bones, hip, thigh and thorax.

What treatment have you had?

For primary cancer I had eight rounds of neo adjuvant chemotherapy, then a mastectomy with delayed reconstruction and then radiotherapy. Then I took tamoxifen for two years followed by Arimidex for a further eight years. In 2016 I was sent on my way with no further follow ups. For my secondary cancer I take Palbociclib, Letrozole and Denosumab, along with a vitamin D supplement.

Have you felt that there have been barriers to treatment and if so, what?

I personally haven’t, but I do know of many people with secondary breast cancer who have to fight for scans and biopsies so they can either start treatment, or if they have progression, to enable their team to plan what is the next best treatment for them to start. All treatment is based on what the scans say and the histology from biopsies. Without these your team is unable to plan the best treatment for you.

Do you think secondary breast cancer is underrepresented/misunderstood and how?

Yes, massively. Some people who have had primary cancer have never heard of secondary cancer. When I was first diagnosed I was not aware that it was secondary cancer you died from not primary.

A thoughtful gift for anyone diagnosed with breast cancer
Balancing Breast Cancer Care Package
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What would you like people to know about secondary breast cancer?

I would like people to know that once you have had primary cancer and you are packed off after five years and told you are cured, that it can come back. Fifteen years later in my case, but I have heard of people being diagnosed with secondary cancer 20+ years after their primary diagnosis. Everyone should be aware of the signs and symptoms of secondary breast cancer, and if you have had a primary diagnosis your GP should look to rule that out first when you present with any of the red flag symptoms rather than check for it when they have exhausted all the other avenues. We all have regular mammograms, but very rarely will the secondary cancer show up in the mammogram - mind didn’t.

What would you like to change around the treatment of secondary breast cancer?

Quicker access to scans and biopsies. Also brain scans should be scheduled annually for those who don’t have a diagnosis of brain mets. At the moment the only time you will get a brain scan is if you have persistent symptoms that could be a flag for brain mets. If you had a brain scan annually any changes would be picked up far quicker and treatment started sooner, which could make a big difference to a person’s outcome.

What is your advice for someone who has just had a diagnosis of secondary breast cancer?

Find a support group, Make 2nds Count has a wonderful private Facebook group, which is so supportive. There are so many people in that group who are living really well with secondary breast cancer, that is what gave me hope when I was first diagnosed with secondary breast cancer. My other piece of advice is to remember that you are not a statistic.

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What is your advice for someone who has previously had a primary diagnosis of breast cancer?

Make yourself aware of the signs and symptoms of secondary breast cancer. Don’t ignore any of the red flag symptoms, and if you do have any of the red flag symptoms push your GP to rule out secondary cancer first rather than as a last case scenario.

October is Breast Cancer Awareness Month. What does this month mean to you and do you feel there is an in-balance in conversation with regards to primary vs secondary Breast Cancer?

Secondary breast cancer only gets one day in the month of October (13th October this year) for specific awareness raising. But it’s secondary breast cancer that kills people, so I think that secondary breast cancer needs a far more prominent place in breast cancer awareness month. 31 people a day die of secondary breast cancer, it needs to be talked about more to ensure that more funding for research can be allocated to secondary breast cancer.

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