Jo Taylor: my experience with secondary breast cancer

Jo Taylor is the founder of MetUp UK, the only secondary breast cancer patient advocacy group in the UK, and ABC Diagnosis. Having been diagnosed with primary breast cancer in 2007, she has been living with secondary breast cancer since 2014. She has since worked tirelessly to improve awareness around secondary breast cancer and its red flag symptoms, creating a simple infographic that is slowly working its way into the NHS framework for supporting cancer patients. Here, she shares her experience, and talks about why we need to do more to raise awareness.

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 2007. I was 38 and on maternity leave with a five month old and a 2.5 years old. We had been out for the first time since I had our daughter to a friend's 40th birthday. In the morning, my husband went to get me a cup of tea. While he was gone, I lifted my right arm up and scratched under my right boob - I found a lump. I didn't say anything to my husband all day but kept checking it to see if it was still there. The next morning I rang my GP and they said to come in the same day. Two weeks later I was told I had breast cancer.

A thoughtful gift for someone having chemo
Breast Cancer Chemo Care Collection

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

Seven years after my primary diagnosis I was diagnosed with metastatic breast cancer, in 2014. It was another chance moment. A friend had messaged me on Twitter saying she had found a lump in her neck and was really scared. I said hopefully it would be nothing but it prompted me to check my own neck, and sure enough I found a lump too. My friend was fine but I was re-diagnosed with metastatic breast cancer. I also had two small spots in my sternum. I’ve had various areas of disease in my shoulder bone, lymph nodes under my left arm and, six years after my initial MBC diagnosis it also metastasized to my brain.

What treatment have you had?

I am still having what's classed as First Line treatment, so I am on the same drugs I started eight years ago. However, in between I have had three lots of chemotherapy and 14 surgeries including having most of my sternum removed and replaced. I do a lot of exercise - prehab and rehab are big topics now but I have done it for years. I've had lymph nodes taken from my neck, under my arm, I had an uplift on one side, and more surgery because I burst a blood vessel and ended up with a big hematoma in the breast that then needed urgent surgery.

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

In terms of drug access at the moment there's a standard pathway you're put on - first, second and third. I haven't had to go further than the first line because I'm responding to the drugs and I've even had three years of no active disease. However, I know for other people there are problems getting access to drugs as there are inequalities around the UK including inequalities of access to radiotherapies and surgeries. We need equal access to all these things because they will create better outcomes.

I was also fortunate to catch mine relatively early - it was in two places, and still small, but for a lot of people secondary breast cancer is found in multiple areas, the brain, liver, lungs, bone & lymph nodes. Like primary breast cancer, it’s important to get it treated early. That same message should be conveyed for metastatic breast cancer - you can live longer and have better outcomes if it’s caught early.

My infographic is signposted by NHS England - it’s taken me a long time to get it included and not everyone uses it yet, but in the Greater Manchester Cancer Alliance, it’s featured in their end of treatment summary report. When a patient finishes treatment for primary breast cancer, their oncologist talks to them about their treatment and a summary. My infographic is a page in that report to help them open the conversion about the risk of recurrence. I don't think clinical people have had that opportunity to open up that discussion with the patient as I feel they haven't known how to talk about it without terrifying people. That report is additionally sent onto the patient’s GP, which is also important because some GPs don't understand metastatic cancer.

The fear of cancer returning is often mentioned as a reason for not engaging in a conversation about metastatic cancer, but that fear is there for everyone who's had cancer. When people are not told about the risks it makes the fear worse because you're looking out for every twinge. If you know the red flag signs and symptoms, then you know when you need to talk to your doctor.

A thoughtful gift for anyone diagnosed with breast cancer
Balancing Breast Cancer Care Package

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

Massively yes! We know that patients are not told about what to look out for and if they're not told then they don't understand. Many many people say ‘oh yes it comes back in the other breast’ - no! That would be a new primary.

It's also the terminology that’s used - there are four terms that are interchangeable: metastatic, secondary, advanced, Stage 4 - it confuses people. We need to talk about it in the same language. The media and celebrities have a lot to do with this - if they're knowledgeable then the message gets out then we can educate people. You will hear about a celebrity who had primary breast cancer and then we’re told they have bone cancer or liver cancer - often it's not bone cancer; it's secondary breast cancer in the bones. I would love for every health correspondent or journalist to have the knowledge to write about it properly to get the right consistent message out.

What would you like people to know about secondary breast cancer?

Some people can live a longer time than the 2-3 year median life expectancy but that depends on two things, the disease type and how early it is identified.. That's why we need people to recognise the signs and symptoms and we need GPs not to dismiss peoples' issues. I have heard people complain of back pain and they’re sent to a physio only to later be diagnosed with metastatic disease later. My friend had pain in her liver, slightly jaundice and was told she drank too much - it was secondary breast cancer in the liver. That's just two examples, but there are many more stories of people being dismissed and ignored by GPs who brush it off as something else or “you’re too young”.

What I really want is a linked-up connected service between GPs and hospitals so they can make the connection with patient history. I have been living for 8 years with metastatic breast cancer - yes it's going to kill me but at the moment I can live and live well with this disease. People call it chronic - it's not chronic until we're all living for 20+ years with it and living well.

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

Better quality of life with the drugs people are on. New drugs are brought out all the time and that’s great, but it's not really acceptable if people are living with nausea, fatigue, losing their hair and diarrhoea. There has to be quality of life as well.

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

Talk to other people, find your tribe - join secondary breast cancer groups, get the support where you need to - look at METUPUK. There's lots of information on there. We are a charity and we want patients to help support us to create change. Better awareness is our top priority - then research and new treatments etc. Our campaign #BusyLivingWithMets was created to show if you get the right treatment, surgeries, radiotherapies, drug access and clinical trials then you can live with metastatic disease for a longer time.

Addressing the top three concerns people undergoing treatment for breast cancer
Breast Cancer Body Care Package

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

I think it's just don't bury your head - be aware. You can’t live every day worrying, we don't want people to do that because we know the positives - we know approx 30% go on to metastasise and this can be up to 20 years later BUT 70% won't. The issue is that there's no test that can tell people who will or won’t be in the 30%. Know the red flag signs & symptoms and act upon any issue. Make sure your GP follows it up - don't take 'you’re too young' as an excuse from them. If you're worried, make sure you have the issue investigated. Hopefully it is nothing and then carry on with living your life.

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?

Yes - it's very pink and very fluffy with lots of cake and coffee and breast checking but we need a focus on secondary breast cancer ALL the way through the month AND the year. We have one day - 13th October - focused on metastatic breast cancer and that isn’t enough. At MET UP UK we launched our Darker Pink campaign last year to highlight that 31 women die every day from this disease. We're helping to raise that awareness across the UK.

It's not one day of the year when you have secondary breast cancer - it's every day of the year.

The Darker Side of Pink, and MetUp UK #BCAMandME

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