Just shy of six years ago I was diagnosed with Inflammatory Breast Cancer (IBC). Rare with a “high fatality rate and difficult to treat” is what I learnt in the first few weeks. Make your peace that you are going to die and marry quickly (I’d just got engaged). My faith that I was getting the best of the best in terms of treatment wobbled pretty quickly. Over time, I started learning and advocating for myself and for others who were also not receiving the internationally agreed standard of care for IBC here in the UK. Quickly, I had met more IBC patients than an oncologist might see in an entire career. I learnt about ‘breast cancer’ trials that would reject IBC patients as we apparently screwed with the figures too much by dying. I learnt that there was no data collected or categorised for IBC so all we had was anecdotally what I could see in a charity support group I was part of. Because there were no up to date figures on survival and treatment regimes, I was caught in the loop of no data to prove we could live just as long and no trials to help us live longer. Driven by pure selfishness of wanting to live longer, I got deeper and deeper into the web that is metastatic breast cancer clinical trials in the UK and metastatic breast cancer data.

When I met Jo Taylor, about two years in, I was bowled over by her little black book. It felt like there wasn’t anyone in the field of metastatic breast cancer she didn’t know, and had the balls to just ask. Ask the politician, ask the Chair, ask the Boss, ask the people whose job it is to help us live as long as possible. What I learnt quickly was that IBC was not special in the way I thought it was. All women with metastatic breast cancer were being failed. There was no national data on any aspect of MBC treatment, surgical interventions, radiotherapy, nothing. And yet it had already been mandatory for 11 years. Just very few Trusts choose to do it.

METUPUK is known for being the ones who prod and pick at the tough questions. Not driven by the need for fundraising at every opportunity, needing to wash a pink smile over everything or needing to dumb it down to a cowboy hat and a feather boa. We could afford to be the angry knowledgeable ones who don’t let things slide. MBC data, with the strapline of “we are only counted when we are dead” became one of the four main areas of campaigning for METUPUK. If average life expectancy for MBC is 2-3 years, imagine how much is unknown if the only time there is any national data analysed and reported is when the death certificate is produced. But let’s think about this further. If there are no national data sets/reporting standards tracking MBC outcomes, how do we know that the average life expectancy is 2-3 years? That’s where research comes in. Most of what we know about drugs, outcomes and snappy headline MBC stats, all comes from research using sub sets of data; one off exercises taking a relatively long period of time. All with caveats and missing data. Last year, research was undertaken to estimate how many secondary breast cancer patients there are living in England. WTAF. We don’t even know how many MBC patients there are?!! I’m not taking away from how important this work was, but how utterly maddening that an estimate is as good as it gets.

Data is big business, and drives every aspect of our everyday lives. Data is everywhere from supermarkets giving you vouchers for what you bought once a year ago to social media algorithms working out what content you need to see (please, no more bra adverts M&S!). Sadly, data isn’t in all the places we expect. For the last 11 years, the breast cancer community has been campaigning for the collection of MBC data in the UK. That’s right, there are no statistics or comparisons gathered at the moment for MBC. Not only does the NHS not know how many MBC patients there are, it doesn’t know how many patients per sub types there are, or crucially, what treatment is working for what groups. Research or anecdotal/local data within a Trust is the best hope of knowing anything. Imagine having lobular breast cancer in a small-ish non-teaching hospital. How much tracking or understanding are they able to develop on ER mutations in Lobular cancer that has metastasised. Not much.

In 2022, NAoMe (National Audit of Metastatic Breast Cancer) was announced, seeking to improve data collection in England and Wales. METUPUK were keen to get involved, and we were delighted to be included in the Advisory Committee. When we first had our briefing from the NAoMe team, our hearts were crushed a little bit. I’ll be honest with you, I thought that I’d finally know how many inflammatory breast cancer patients there are in England and Wales because surely we’d have ALL the answers and so the little tiny rare questions would also be answered. There were a lot of swear words that day when we found out what the actual scope set by HQIP was and what the type of data was that we could hope for. Sadly, data collection is still the holy grail that evades us. Data is not being consistently recorded/collected and so will any meaningful insights be gathered? Maybe. But it is going to take time and in all likelihood, doesn’t answer the questions that we need answered. I remember last year, Tass (our Welsh dragon) asking a question about data collection at our conference in Wales to the head of the Welsh Cancer Network. The response was that for us, as patients, to encourage our clinical teams to complete data about our treatment so that the national picture would be possible. I’m still in shock that the solution to the problem is on us, as patients.

MBC patients want to live as long as they possibly can, with the best outcomes, and to achieve this want to receive the standards of care which are in operation in the best teaching hospitals in the country. They want timely access to NICE approved drugs, equitable access to clinical trials, and access to surgical and radiotherapy interventions. Our diagnosis and subsequent progressions should be discussed at MDT meetings with a range of experts and access to pathological testing at each progression. Psychological and specialist support from key workers is also important, but it is the core medical interventions which will largely determine outcomes. Until we can evaluate who is getting 10 years and who got 12 weeks with metastatic disease, the work is not done. Anecdotally, we think LMD – leptomeningeal disease (metastatic breast cancer in the lining of the brain) is on the rise as do some clinicians. Where is the tracking data showing that this is the case, or that it’s only in longer term survival patients, or only in TNBC or only in those whose receptors have flipped? We have nothing.

The reason why data is so important is that out-of-date data, feeds out-of-date knowledge which has a life changing impact on our outcomes. Spend time in any mTNBC support group and they all knew of the impact Trodelvy was having on MBC patients in the US before it was possible to access in England. More recently, and still ongoing, is the Enhertu for HER2Low campaign. We as a nation, don’t know how many patients this decision impacts in the UK. So how can it be costed or understood without the most basic piece of information. How can it be turned down when we don’t know how many people are being turned down?

Do we have hope for data? Yes, but it’s a small yes. It requires every ounce of energy in our treatment ravaged bodies to hold to account what’s needed for the thousands of women and men who have died. And until I see every sub type of breast cancer counted, understood and analysed, the work continues. Since recording of MBC data was made mandatory but never adhered to in 2013, just shy of 130,000 women will have died of metastatic breast cancer.

Let that sink in. They were only counted when they were dead.