It is 3 years this week since I was diagnosed with primary breast cancer. The primary bit means the cancer is at a stage where it is either isolated to the breast or at least hasn’t got beyond lymph nodes in the armpit. It means that it’s probably curable. I spent almost a year being poisoned and blasted with radiation and having bits of me cut off. Since then, whilst it doesn’t cloud my every thought, it’s fair to say that every ache and pain fills me with fear and suspicion that the cancer may have come back or worse, may have spread.
Occasionally breast cancer has spread beyond the breast before it is diagnosed or it can spread very quickly during or soon after treatment for primary breast cancer. Breast cancer is also, as far as cancers go, a particularly tenacious beast and whilst many cancers rarely return after 5 years or so of being clear of the disease, breast cancer can appear in distant organs many years after primary treatment. When breast cancer spreads to other parts of the body it is called metastatic or secondary breast cancer and it is incurable.
Theresa May PM referred repeatedly to people who have “come through cancer” in a response to a question about secondary breast cancer at PMQs on 12th October 2016 showing that she had no understanding of what secondary breast cancer is or means.
Secondary breast cancer doesn’t mean getting breast cancer twice. Nobody “comes through” secondary breast cancer.
So how many women and men develop secondary breast cancer? Well, we don’t know. Remarkable as it may seem there is no accurate, up-to-date data on the number of people diagnosed or living with secondary breast cancer in the UK. We know that around 11,600 people die of secondary breast cancer every year but we don’t know how many people are diagnosed each year, how long after primary diagnosis they are diagnosed, how long they live or even the extent of their disease.
In November 2012, The National Cancer Intelligent Network, a government agency that is part of Public Health England, wrote to all NHS Trusts in England mandating that data on secondary breast cancer be collected. As of September 2016 no such figures had been published. None.
Whilst figures have not been published that might not mean they aren’t being collected though and Breast Cancer Care undertook research to find out what NHS trusts are doing in relation to the requirement to collect data on secondary breast cancer. This is what they found:
- Two thirds of trusts aren’t collecting the data they should be
- 47.2% of trusts are collecting some but not all data
- 19.8% of trusts are not collecting any data at all.
My local NHS Trust – Southend University Hospital is not collecting any data on secondary breast cancer. They do not know how many of us have secondary breast cancer. They do not know how long those with it live. They do not know how many of us need help, support or assistance and they do not know for how long. They do not know if the resources they have are adequate or if the services they deliver meet the needs of people with secondary breast cancer and their families.
My friend Maria was diagnosed with primary breast cancer at the same time as me. We live in the same area and come under the same NHS Trust. Maria developed a recurrence and secondary breast cancer within 18 months of primary diagnosis. She died just after Christmas in 2015. Our local hospital has not recorded her experience.
By not recording that data and the data of all the other people with secondary breast cancer they are missing an opportunity to ensure that everyone with secondary breast cancer gets the support and treatment they need.
What can you do?
- Check this Map at Breast Cancer Care to see if your local Trust is collecting data.
- If they are not, contact them and ask why. Here is a list of NHS Trusts in England and their contact details.
I have contacted my local trust and asked them why they are not collecting data and I will continue to lobby them until they do. Remember they are required to do this; they just aren’t.
I think people with secondary breast cancer deserve better than that.
I know Maria did.