We started our campaign in Metastatic May with some information about treatment lines and it really caused a bit of a stir, especially on Instagram.
Why? Because people don’t want to think that this disease is going to kill us. We have to remain positive. We have to see the chink of light and I agree we all have to have hope. That was my introduction. We need hope.
So what we are trying to do, and what #BusyLivingWithMets has tried to do is not paint a picture that everyone is living well. Unfortunately, some people never achieve stability on their MBC treatments – something even more likely for Triple Negative and Hormone Positive breast cancers. But we want to get across to people that we COULD live well, and we COULD live longer than the 2-3 year median survival.
MBC is not a chronic disease, but it COULD be one, and we want more to be done to make it so. How does this happen?
The only way is investment – we need those in power whether it is NHS funding herceptin 4th+ line or whether it’s pharma or research or clinical trials – we need people to stop thinking that this is a done deal.
It’s not a done deal. But when you have people saying that there are lots of drug lines, promoting positivity and that everyone is living a long time (yes there are a small number of “outliers”) then the people who make these decisions and the general public look at breast cancer and think “we don’t need to invest everything is OK”.
We have a situation where breast cancer has the biggest amount of funding by Cancer Research, bigger than any other cancer type. And people with other cancers look at it and are upset that they are not getting the same focus as us.
But remember: MBC is the biggest killer of women under 50 and that deserves some press and attention and that is what we are trying to do.
Yes there have been improvements in primary breast cancer and people are living longer with some better drugs but there is still that 30% who will (at some point and this can be up to 20 years later) metastatize and develop metastatic breast cancer. We don’t know who that will be. That is a problem. Everyone with primary BC are constantly worried with Fear of Cancer Recurrence.
If you look at the data I am sharing here, you will see that ER+HER2- and TNBC have poor outcomes. The main advances have been in HER2+ disease and that is really all due to Herceptin/Traztuzamab 20 years ago.
What does it show?
MBC by disease type & by area of progression of metastatic disease with the curve out in months (not years).
Along the left axis % of people. The bottom axis months.
At the top where disease type is you have numbers of people in the sample so ER+ HER2- is the most common but poor outcome. TNBC worst outcome 
Each line by colour is where the disease was originally diagnosed – obviously this doesn’t give a picture of someone with multiple mets but I guess that would be an added problem to survival.
So remember, when MBC is played down that it’s “chronic” and “everyone is living longer” that this is an additional nail in our coffin for demanding change and getting the RIGHT investment into MBC. We need better drug access, clinical trials, surgeries and radiotherapies to manage our disease well with a personalized approach.
Until then please support METUPUK in our quest to make this disease a chronic disease – a disease where we are living 20 years + after a diagnosis but we can only do that with everyone’s help and we want everyone with every disease type to be living like this, not just a few.
WE DEMAND CHANGE.
