Welcome back folks to, what appears to be, the annual blog!
I was inspired to take to the keyboard again after participating in my first patient advocacy interview – on the subject of oncological psychology. I was asked to describe my experiences of secondary breast cancer for research purposes, which I so hope will better affect the support given to future sufferers of the disease. It was great to be heard for once and it’s prompted me to address some other things about the illness that a lot of people are getting wrong or don’t understand. It’s mostly the result of public misinformation and the lack of statistics around secondary breast cancer, so I thought it was a good time to spell out a few facts.
A Few Facts
1.Secondary breast cancer is also called stage 4, advanced or metastatic breast cancer (MBC). These are not four different things – they’re one and the same. I always use the term secondary breast cancer or ‘secondaries’ because that seems to be the term more commonly used in the UK.
2.Secondary breast cancer is not a new breast cancer! It means the breast cancer that was originally diagnosed and treated has spread to other parts of the body. In breast cancer these other areas are typically (but not limited to) the bones, lungs, liver and brain and it is still breast cancer, even though it’s now in these other areas.
3.Secondary breast cancer is an incurable and life limiting disease. It is treatable, but the median life expectancy for someone diagnosed with secondary breast cancer is only 2-3 years and approximately 31 women die from it every day in the UK. It is not a chronic condition!
My breast cancer has spread to my bones. From the top: I have ‘deposits’ on my skull (I guess that means tiny specs of cancer – I keep meaning to ask, but I forget every time); there are extensive tumours on my spine, from top to bottom and front to back, both shoulders, shoulder blades and the left collar bone, also my ribs and sternum, my pelvis and both hips. I’m very well covered!
As a result I am advised not to fall (quite the challenge for me), run, jump, skip, dance wildly, climb, cycle, carry anything heavier than ‘regular’ shopping or do DIY. I am also a high risk for spinal compression injury so I carry a card with an emergency number on it ( I realise this will be pretty useless if I’m found unconscious) and recently there was some concern that my right hip might need pinning or replacing. Thankfully my orthopaedic consultant thinks not – for now at least.
Now I know I haven’t given so much detail before, mostly because I think it makes for uncomfortable reading, but details are important. I like details. When I was first diagnosed with secondaries I scoured the internet to find someone ‘like me’ – someone with just as many bone mets that was still alive five, seven, even ten years on. I wanted to have some hope, a cancer benchmark if you like. They might be out there, but I haven’t found them yet and there are no stats to go look at either. If someone newly diagnosed with secondary spread to their bones stumbles across this post, I like to think it might give them that glimmer of hope I’d looked for. I’m coming up to 3 years of survival; I’m still well and active, in spite of the fact that almost my entire support structure is affected; I’m still on the same treatment I started back in 2018; my cancer is still stable – according to my last scan – so I’m not doing too badly! The only issue I have currently is my white cells plummeting on and off, which is a pain as it means that one of my drugs will have to be reduced, but even this may be just a temporary blip.
Red Flag Symptoms
While I’m here, I’d also like to use this post as an opportunity to remind anyone that is worried they may have secondaries to get checked! Do not allow your concerns to be fobbed off or ignored, push for the scans if you have to, and in case you’re not sure what you need to be looking out for, take a look at this infographic created by ‘abcdiagnosis’ that was designed to help recognise red flag symptoms.
I wrote all this without much of a plan and I haven’t a bloody clue how to conclude, so I’ll simply ramble a bit about the drawing I’ve used to illustrate the post. It is surreal and may seem grim – I’m not altogether sure what my intentions were when I made it, but they weren’t at all negative. The fancy title ‘Elpis and the Lepidopterarium’ means ‘Hope and the Butterfly House’. (And yes, it is for sale!)
The little girl is me, holding a golden chrysalis, and she still has a lot of hope.