I watched with interest the phenomenal feat by Lucy Gossage founder of 5K Your Way (Move Against Cancer podcast) and winner of the 2025 Spine Race which is an ultra endurance run from Edale, Derbyshire right up the country on the Pennine Way to Kirk Yetholm in the Scotland Borders. 268 miles!
It’s an amazing achievement and I applaud her endurance and physical stamina.
I was asked to talk last year at the Greater Manchester Cancer Conference in May as a keynote speaker and Lucy was also a speaker. She knows of the work I do with After Breast Cancer Diagnosis and METUPUK. Exercise and physical activity has always been my go to since I was diagnosed with breast cancer 18 years ago and then re-diagnosed with incurable metastatic breast cancer (MBC) 7 years after primary BC. It helps me not just physically but also with my mental health, getting out into the fresh air. Whatever you can do, big or small, just keep doing it.
Lucy isn’t a cancer patient, but an oncologist and prescribing cancer treatment is a large part of her day job. She believes that doing little bits of exercise can be completely transformative and can mean that someone is then fit enough to manage a cancer treatment that could add years to their life. Of course, there are only a small number of patients who can do feats of endurance like Lucy can. Most can’t, but even walking a short amount sometimes can feel like you’re part of an endurance race. A race to keep alive and functioning living with cancer.
I used to be a runner. I have never wanted to do any ultra marathons, and I wasn’t competitive. I just liked that I could help keep myself fit with running. I have been thinking about this a lot recently and as I have provided my motivational exercise retreats for the last 8 years, I feel I am knowledgeable how to motivate people. Certainly, show that you are doing this yourself. There’s nothing worse than someone preaching to you and telling you what to do when they don’t do the thing they are asking you to do themselves.
And I began to think about the foundation of why METUP (USA) was created, inspired by the HIV organization ACTUP and their aims to cure people of AIDS.
If anyone had said to this activism group that exercise was key to curing HIV AIDS I think they would have run you out of town. Men were dying and it was clear that the only way to focus on this was through research and getting drugs to treat the disease. Activism and campaigning were key. They were FOCUSED on change. Of course, AIDS is very different to cancer, it is a virus that was causing men to die. BUT they were vocal, very vocal and if anyone remembers the adverts on TV they were very dark and focused on death and people dying. It certainly would have never had the pink and fluffy connotations attached to it that breast cancer has.
40+ years later the disease is not a death sentence for those who can access the drugs, it is a disease which can be treated. HIV positive patients with access to good medical care live as long their peers without HIV and have a good quality of life.
Now looking at metastatic breast cancer. The statistics haven’t massively changed in the last 30+ years. Yes Traztuzamab/Herceptin for HER2 breast cancer came along over 20+ years ago and helped those patients and a few new treatments have increased survival for other breast cancer types over the last 10 years BUT we are still dying from this disease. Many not living over 5 years, running through lines of treatment and being resistant to the drugs.
If someone with AIDS/HIV was told to go out and exercise instead of being provided with effective drugs which improve outcomes, they would have laughed. I know that physical activity can help with reducing the risk of recurrence for cancer (there is research on this) but there are no figures to say how many patients this benefits because we don’t know. Just like we don’t know why breast cancer happens for some people and not others, and why some patients metastasize, and some don’t. We don’t know why some people survive for a long time on existing treatments and why some patients die within months or even weeks of starting treatment. We only know that if you get MBC, women die, 31 women every day.
Currently in the UK 187,000 patients die from all types of cancer (2021 data below) HIV accounts for 235 patients dying in the UK. https://ourworldindata.org/grapher/annual-number-of-deaths-by-cause
So my question to all those policy makers, the government and professionals working in research and clinical trials.
Why are we still not further ahead in this research? It feels like research is holding us back and that we are not getting the survival and outcomes that other diseases have.
Again, I understand HIV is a virus and cancer is different BUT we need better in cancer research and trials.
Men came out in their thousands to campaign and get change. Whoever it affected, they were vocal and campaigned.
It feels like no one is really bothered about women dying with MBC.
Every news report about someone dying of MBC talks about finding a lump. The red flag signs and symptoms of MBC are rarely mentioned leaving patients with MBC feeling ignored, side lined and invisible. We are not counted; some drugs don’t even get made available ALL across the UK and the clinical trials databases are a total mess because they just don’t support patients to get on trials. We are not even counted when alive, only when dead.
Do women after primary cancer really feel that a mammogram is going to say that everything is ok? No, it’s not. Read it again, a mammogram is not going to save you from MBC.
What an utter shit show this is. Would men with HIV put up with this? I don’t think so. Why are we accepting the fact that we will die?
The 10 year cancer plan has been thrown away and now cancer is included in a plan with other diseases like diabetes or heart disease. This is not the focus we need; this is ignoring ALL patients with cancer.
So how do we change this? How do we get our voices heard? How do we get policy makers to make the change to drive better survival and outcomes?
I really don’t know, but I do know one thing, that physical activity isn’t the thing that we should be focusing on. Yes, part of rehabilitation and supportive care but we need to make sure that real change is being made to help women live longer with MBC and for us eventually to have drugs that we are not resistant to, and this is key.
I was hoping that genomic testing and ctDNA (measuring circulating tumour DNA in the blood) would change things for MBC patients. In the UK we are not routinely testing for genomic alterations in ctDNA as standard on progression, although there is now limited provision for some patients with hormone receptor positive MBC. We need research to explore if ctDNA testing has wider potential for all MBC patients and if it can be implemented in our pathway. Of course, knowledge of biomarkers is of limited use if there are no drugs to target them. So, we need better drugs to target cancer, and for these drugs to be approved and funded for use on the NHS across the UK.
If there are researchers out there reading this, METUPUK would love to talk to you about this and drive these issues forward. We need ALL your voices to promote and create change for MBC patients. Otherwise, we will just continue to die.
Jo Taylor BEM, Founder of METUPUK