A long but very important post coming up – please read this.
It’s nearly October and we all know what’s in store – #BreastCancerAwarenessMonth – a sea of pink.
I’ve been asked a couple of times how to respond to the silly pink games, tutus and feather boas that you will see during October, and have decided to write about the realities of breast cancer, in particular secondary breast cancer which I have and am living with.
The dreaded #Savethetatas doesn’t seem to be about breast cancer awareness – it seems more of a reason for women to show off their breasts. Sadly it also takes place on the 13th October which is Secondary Breast Cancer Day – 13th unlucky for some (!)
This is the only day that officially recognizes a disease that kills 31 people every day – 1,000 a month – 11,500 EVERY YEAR in the UK alone…
You would have to have been living on Mars to not know the key messages of the last 40 years around breast cancer – self check, catch it early, wear your pink ribbon. Every woman young and old knows what it means.
But here is a statement that you may not know.
YOU DO NOT DIE FROM PRIMARY BREAST CANCER.
Surprised?
55,000 are diagnosed in the UK every year. Around 70% of women will be cured and never have any further issues with the cancer coming back.
That’s the good news.
Now for the bad news.
The other ~30% of women and men will go onto develop secondary breast cancer (SBC, aka advanced breast cancer, metastatic breast cancer, stage 4 breast cancer).
SECONDARY BREAST CANCER IS THE DISEASE THAT KILLS PATIENTS.
And this can be up to 20 years later for some breast cancer types.
Because of the total lack of awareness of SBC I have spent the last 6 years developing the #SBCinfographic. It’s two documents which highlight DUCTAL and LOBULAR secondary breast cancer.
After being told by clinicians, nurses and charities that patients don’t want this information, I continued to develop it because that is NOT what I was hearing. Patients I spoke to weren’t aware that their back pain, or cough, or nausea could be down to SBC. I have met and supported many patients that have been misdiagnosed or dismissed from a GP only to go onto have further investigations after numerous appointments and discover they have this life limiting, incurable disease.
NHS in England have been aware of my infographic for a number of years and around 2 years ago they started signposting to it.
I have worked with Greater Manchester Cancer on their Breast Cancer Personalized Care Plans and my basic infographic is being ratified and will be included in patients’ and GPs’ documentation.
Gateway C, a portal for GPs, also now have the infographics.
Awareness is NOT just about a lump (and lobular you don’t always find a lump) this is about the whole pathway of awareness from finding a lump to the possibility of finding secondary disease.
*Just to be aware that you can have a “recurrence” in your breast – this is associated with the primary disease that hasn’t spread to other parts of the body. SBC is when it has spread outside the breast and the main areas are the bone, liver, lungs, brain and lymph nodes. See my infographics link below.
Additionally there are patients who have been diagnosed DENOVO – this means that they have never found a primary breast cancer lump but they have gone onto develop SBC and been diagnosed when the cancer has been found in the bone, liver, lungs, brain or lymph nodes, often in several of those places. Those patients experience a huge shock and around 6% of patients are diagnosed DENOVO. So where is the awareness for them? See my infographics link below.
The median life expectancy of SBC is 2-3 years.
We want to make this disease a “chronic” disease, like the advances in HIV. Not the current incurable and terminal diagnosis we currently have.
It’s a shocking statistic but there are many who are living further and further out. That is why we need better #drugaccess and better focused #clinicaltrials.
The patient story book that I recently produced covers the cancer pathway from initial mammography through to SBC. It provides patient stories which you may relate to and it highlights the importance of the #SBCinfographics so that all women are aware of the symptoms.
So, anyone who talks about #BreastCancerAwarenessMonth please send them this information and then they will truly be aware and informed about the disease.
Here is a link to the infographics – share them or even print off and take to your clinic and ask them about SBC.
Here is a link to my book which is free to download as an ebook OR you can order it with a small fee for P&P – there are 10,000 of these books being circulated around breast cancer clinics in the UK.
And if you want to donate to any charities make sure it’s going to the right area which is research into SBC – this is what will help people in the future.
We have donation pages for ABCD (we run an exercise retreat for BC patients)
And lastly we also run a patient activist/advocacy group called METUPUK so please visit the website and see what we are trying to achieve. If you would like to join us to help in any way then you can email on the link on the website.
And if you would like to donate to the important work we do here is the link
Lastly, thank you for taking the time to read, this disease kills people and we can only make change if we all shout about it.
Please share this widely as we all need the right kind of awareness, and not pink fluffy boas, for the whole of #BreastCancerAwarenessMonth
Love Jo x
