Last night I wrote a letter to Prime Minister Andy Burnham to remind him of the desperate plight of the 22 women who are diagnosed with lobular breast cancer in the UK every day. Women who have been failed for generations and who cannot be failed any longer. You can read the letter in full below.
Dear Andy Burnham,
First, I want to say congratulations on your appointment as Prime Minister. I, along with many others, desperately hope that you can make the enormous changes needed to bring a fairer society that meets everyone’s needs, not just those at the top, and to ensure the welfare of our planet is high on the agenda.
You may not remember, but we met last year on a Zoom call when I was running the publicity campaign for the Lobular Moon Shot Project. You very kindly gave a statement announcing your support for the campaign and recognised the vital need for funding.
As you know, we met Wes Streeting a year ago, and he promised to plot a pathway forward to put funding in place so that women like me who are diagnosed with lobular breast cancer – and those to come – will finally get the specific treatment that we need. Sadly, he let us down.
I told you a little of my story last year. I was diagnosed in January 2023. In some ways I was fortunate because my cancer was found quickly. But it was already at an advanced stage and had spread to three lymph nodes and into some nerves. I spent a year having “belt and braces” treatment – treatment that is not specific to the disease that I have. This included surgery to remove the tumour, the removal of 23 lymph nodes, 8 rounds of chemo and 15 sessions of radiotherapy. I then spent the following two years having Zoladex injections in the stomach every 30 days, which led to my ovaries being removed in December last year. I’ve also had six Zoledronic Acid bone infusions and I take a daily hormone blocker.
If my cancer comes back it means the drug has become resistant and I will be switched to another, but due to the appalling lack of funding there will not be very many options. This is what women with lobular breast cancer and their families deal with on a daily basis.
This is hard to live with, but what I find more difficult is knowing the government, which has all the facts about the disease, refuses to help us in any meaningful way.
I’m sure you remember my friend Dr Susan Michaelis. You met her on the Zoom call and sent condolences when she died last July. Last week, the Lobular Moon Shot Project held a third Silent Vigil to remember Susan and to again call on the government to ringfence the £20m funding needed.
I interviewed MP Scott Arthur at the vigil. In a Westminster Hall debate two weeks ago, he pushed back when Minister Stephen Kinnock said the government does not ringfence money for this type of funding. This is not true. The government has ringfenced money in this way for dementia, MND, and, as Scott Arthur told me last week, for brain cancer. You can watch my interview with him here.
Women across the UK have been badly let down by the healthcare system for decades. But to know about a cancer and to ignore it is unforgivable. It is not a rare disease – it makes up around 15 percent of diagnoses, which is 22 women in the UK every day.
As you know, the Manchester Breast Centre – in collaboration with top European researchers – is ready to start this work. They just need the £20 million.
Last year you said you would help us. Now, as Prime Minister, you have both the opportunity and the authority to make sure that promise is kept. Please don’t let us down.
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