What’s it like having a mammogram when you’re a wheelchair user? Not easy! Warning: some of the frank descriptions within this blog may cause embarrassment or be upsetting.
Alt text: Two lemons on a metal cooling stand. One lemon is positioned straight ahead whilst the other is positioned side on.
Two weeks ago, I went for my annual mammogram. I’ve had many mammograms because I’ve been a patient at my local Breast Cancer Family History Clinic for years. But since my breast cancer diagnosis, mammogram results carry far more weight. Every cancer patient knows that they’re only as good as their last scan.
I got the results of my scan mid-week & thankfully there’s no evidence of cancer. This is my second all-clear since my surgery & radiotherapy so it looks like the treatment is working.
It’s difficult for me to have a mammogram because I’m disabled. Over time, I’ve worked out a way of being scanned which involves short bursts of propping myself up on my feet. However, this time around I was worried because I’m experiencing lots of sharp pain in my feet & ankles (probably increased neuropathic pain from the medication that I’m on, but I’m still going through the process with my consultant to determine this). I’m experiencing excruciating pain on the bottom of my right foot, and yep, you’ve guessed it, this is the leg that isn’t affected by my impairment. It’s the leg that I rely on to do all my transfers safely and to drive with. I thought that the surgery & radiotherapy would seriously affect my right arm (it hasn’t) but who knew that it would affect my right leg?! You can’t make this s**t up. My faithful right leg didn’t let me down though & the mammogram passed without too much incident.
I can’t stay in my wheelchair to have my mammogram. Although the technology of the scanner has improved over the years because the plates can go lower, this still isn’t low enough for me. Therefore, I have to make some very precarious manoeuvres in order to get the scan done.
I bet most people wouldn’t even guess that disabled people often don’t get access to routine scans & tests that affect the general population. Sometimes it’s because GP’s & other medics have this weird notion that we won’t need them because somehow our existing disability makes us immune to cancer or other diseases. Or it’s because the way that the test or scan is given is inaccessible & we’re not offered any alternative ways to have the test or scan.
I’ve experienced being blocked for routine tests before & it’s exhausting trying to push back against these attitudes. It both scares & angers me that I could be denied routine tests & scans that are readily available for the non-disabled public without question.
Sadly, I also think that disabled people & their families can have a lack of awareness that common diseases can affect them too, or that they feel that they don’t have the power to challenge the ‘status quo.’
At one early mammogram, I nearly didn’t get past reception because as soon as the receptionist saw me wheeling in, she boldly exclaimed “You shouldn’t have been given an appointment today, we do people like you on Mondays because you take so long!” People like me indeed. I was as rude to her as she was to me. I told her that I’d had mammograms in the past & that I’d worked out a way of safely having them which works for both me & the radiologist. I rounded off my diatribe by informing her that I take up no more extra time than the average person because the radiologists were used to scanning me. At that point, the radiologist rescued me before a full-on row broke out. But joking apart, it’s these kinds of attitudes that can put the most resilient of disabled people off, let alone the humiliation of being spoken to in such an inappropriate way in front of others in a packed waiting room.
On the whole, radiologists are supportive. Most of them have a mini freak-out when I enter the room in my chair, & I think that’s a normal human reaction. I’ve found that if I tell them that I’ve had a lot of mammograms & I’m very used to what happens, it puts them at ease. However, on rare occasions, I come across radiologists that don’t like the situation at all; I guess it might be because they think that I’m challenging their authority, or they might be trying to get through their patient list as quickly as possible – who knows the reasons why. However, the radiologists that don’t listen to me are usually the ones that hurt me. It’s silly really; it makes more work for them because the scan takes longer – I have to take more rest time during position changes to settle my pain.
I don’t like it when there are two staff members in the room. I find that it makes communication more difficult because then I’ve got two people to reassure. There’s also more of a likelihood that they’re going to talk over me which I find hard to manage.
Whilst with a difficult mammogram the radiologist might put it down to a “one-off” experience & be able to move on quickly, in contrast, I’m left struggling with how I’m going to manage my emotions over what’s just happened & how I’m going to mentally prepare myself for the next scan.
‘Same old’, as they say.
I didn’t know how hard having a mammogram was going to be until I first came face-to-face with the scanner & I had to do improvise on the spot. But then like many disabled people, I’m used to improvising.
The method of being scanned that I’ve perfected goes something like this:
I lever myself out of my wheelchair & position one boob as best I can on the metal plate (& why is the plate always freezing cold!) Then I put one arm around the side of the machine to hold on, & the other arm around the other side of it, but lower down so that my shoulder isn’t in the way of the plate. The final positioning is bending my legs & balancing precariously with them apart, hoping that they don’t start to spasm, or even worse, give way beneath me & leave me dangling by one of my boobs! I can barely hold this position, so I tell the radiologist to run round to her booth as quickly as she can to take the image. After the image is taken, she comes running back to release me, & I collapse back into my chair, breathing heavily. I drink lots of water in between.
These crazy manoeuvres are repeated at least 3 times more times. Quite frankly, I’m amazed that I’ve never been left hanging by one breast!
Two of the positions are particularly hard for me. My sternum protrudes because of my scoliosis so scans on the right side (yep, the side where I had surgery!) literally leaves me gasping for breath. The radiologist has to be quite skilled in knowing how far she can push the plate against my sternum in order to get a good image. The other one difficult position is on the left where I have a bit of rib sticking out due to my displaced hip. Often this part of the rib gets caught underneath the plate if I position myself incorrectly.
My shoulders getting in the way is a real pain. Some radiologists deal with this by pushing my shoulder down. Unfortunately, by taking this approach, rather than letting me gently lower my shoulder into position, I can’t adjust my feet quickly enough & I find myself going off-balance. It’s worse if it happens on the right-hand side because the metal plates pinch my right boob very hard. This is very painful as I’m still sore here two years on from surgery. It’s so frustrating when I know that it doesn’t have to be this hard to scan me, & it doesn’t necessarily have to hurt me, either.
I can understand that upon reading this, you might think that this is quite an ordeal to go through. Well, yes, it is, but it’s so necessary. Over a decade ago, an annual mammogram detected non-malignant cysts & two years ago, the annual mammogram detected a small cancerous lump.
I hope one day that the machines will be flexible enough to cope with a multitude of body shapes. And there’ll be alternative & more comfortable ways of scanning disabled people.
Meanwhile, I hope that my right leg, or my ‘transfer’ leg as I call it, stays strong enough over the next 10 years to cope with keeping me in position for the mammogram, even if the entire process is a bit wobbly!
So, what advice would I give other disabled people about having a mammogram? I wouldn’t recommend throwing yourself in at the deep end & dealing with the situation on the spot like I did. I’d encourage you to talk it all through with a breast cancer nurse, a consultant & the radiologist so you can work out with them how you’re going to be scanned or if there are alternative ways in which you can get your breasts checked. And if you’re ever blocked from getting a routine test or scan, ask for a different medic on the team to be assigned to your case (I know that isn’t easy) or get a 2nd opinion. If you feel strong enough, or if you’re foolhardy like me, then share what’s happening to you on social media, or in the cancer charities’ online forums. People are generous with responding with their own experiences & with helpful advice.
Whatever happens, you have a right to these routine tests & scans, so please don’t give up.