To mark Breast Cancer Awareness Month, Chloe and Becca, who both live with muscle wasting and weakening conditions, share their experiences of checking their breasts. Chloe has been seen at a Breast Care Centre twice and has had to change how she checks her breasts over the years due to the progression of her condition. Becca has never been able to check her own breasts. She shares how she had this discussion with her mum and gives advice on how you can approach your carers for support.
Checking your chest when you struggle to ‘CoppaFeel!’
How Chloe checks her breasts
My first experience of a Breast Care Centre came before I had even learnt how to check my chest. I was about 14 and my bra was uncomfortable on one side, so I felt the skin underneath and found a lump. I plucked up the courage to tell my mum, who booked me in with my GP. I was seen within a week as I was so young. Having a condition as rare as nemaline myopathy made it a longer process than usual, but by the end of the appointment I left knowing I had what they called a ‘breast mouse’ (fibroadenoma), and that I was fine. From that age on I continued to do regular breast checks.
My second visit to the Breast Care Centre was in 2020. This time it turned out I had an issue with my lymphatic system due to the sepsis I was still recovering from, so the lumps under my arms were swelling but would settle with time.
These are two situations where I was seen quickly and left feeling very relieved.
I wouldn’t now know if I had some of the signs or symptoms though, as I can no longer feel my breasts. Due to the progression of my condition, I have limited sensation in my hands which means I can’t check my breasts very well anymore.
When I saw one of my consultants earlier this year, aged 27, they asked if my lymph nodes had now settled down (as for years they hadn’t) and I said I wouldn’t fully know if the lumps were gone and explained why. She asked me if there was someone at home who could help me check my chest. I explained how I live with my new husband, and she questioned whether he could help …I remember thinking, and saying out loud, that I didn’t want my husband of three months to take on this responsibility so soon into our newly married life. So, she checked my chest for me!
“Now, almost a year into married life, I still don’t want it to be my husband doing this medical routine for me, so I need to think about who can do my regular chest checks as I don’t see medical staff that often. Which is why we are coming together this month, to find out how everyone finds a way to check their breasts.”
Chloe
How Becca checks her breasts
As a 25-year-old woman with spinal muscular atrophy, I’ve never been able to check my own breasts. I don’t have the strength to push hard enough into the tissue to feel for lumps, or the ability to lift my arms above my head to check my underarms.
I’d never thought about needing to check my breasts until Freshers’ week of university. There were representatives from CoppaFeel! handing out leaflets about how to check your breasts and encouraging everyone to sign up for their monthly text reminder. I followed my friends in doing this and didn’t think much of it until the text came through the next month. I looked down at my boobs, attempted to give myself a pathetic feel, and thought ‘I can’t do this’.
“Although I have 24-hour care, as an awkward 18-year-old, I felt too embarrassed to ask them to check for me.”
Becca
Luckily, I have a very good relationship with my mum, so I called her to chat about what we could do. Ever since then, my mum has checked my breasts. This is an unusual situation for a grown woman, but it works for me.
Now I’m older, I could probably be confident enough to ask one of my more trusted carers, but that would come with its own issues. By now, my mum knows what my normal is, but I would have to teach them this, which feels quite intrusive. It helps that they are all women themselves, but not everyone checks their own breasts or feels they have the knowledge and confidence to do so. So, I would have to trust that they were aware of the signs of breast cancer as well as guidance around checking. The thing that would make me most nervous though, is I think they’d be shocked if I asked them.
My carers are essentially an extension of my limbs, and they do everything I can’t do for myself, from shaving my legs to helping me go to the toilet… you name it, they probably help me do it. They receive a great deal of training from Continuing Health Care (CHC) about how to help me with everything I need, so why aren’t breast checks included in this?
“If you feel like your carers are the most obvious choice to help you check your breasts, I suggest choosing one of two carers so that they get used to your normal and would be able to notice any changes.”
Becca
I also think it’s important to include this in your own training with new carers, even though it’s not something CHC offers, so that you feel in control and comfortable.
A message from Muscular Dystrophy UK and CoppaFeel!
Breast cancer doesn’t discriminate. It can affect anyone, including those living with a muscle wasting and weakening condition, or any disability which may impact the ability to check your chest. Therefore, we need to open up the conversation to all young people to encourage, educate and empower them to get to know their bodies, in a way that they’re able to.
Both CoppaFeel! and Muscular Dystrophy UK are working to address existing health inequities and societal barriers. We want health information and resources that are tailored, relevant and accessible for all people. While we’re still working towards this, we know how important it is to share individual stories so more people can begin to have proactive conversations about chest checking.
Check your chest
If you already have someone who supports you with checking your chest, or are thinking of asking someone, visit the CoppaFeel! website for more information about how to check your chest.
Sign up for monthly text reminders.
Sign up for text reminders from CoppaFeel! to receive monthly prompts that will help you stay on top of your breast health, making sure you never forget to check your chest.
