Here I’m talking about key experiences during treatment, such as my annual mammogram, as case studies, opening up conversations about disabled people & Breast Cancer.
I’ve written four case studies so far – Treatment choices, surgery, mammograms & radiotherapy.
Treatment Choices:
On the same day that I received my Breast Cancer diagnosis, 10th March 2020, I contacted all my other medical professionals that dealt with my impairment. Most of my key medics liaised over email & there was one online meeting (because it was during the pandemic) to discuss how they were going to safely give me a GA (general anaesthetic). Taking this action meant that my Breast MDT (Multi-Disciplinary Team) got a 360-degree review of all my comorbidities & how they are treated. It gave the Breast MDT an opportunity to take advice from healthcare professionals who had been treating me over decades. They could save time when it came to working out what treatments would have a positive, or negative, impact on my quality of life. When they understood this, they could better plan my treatment plan & it was how I avoided chemotherapy. These conversations also helped my team to understand my psychology & how I might cope.
Surgery:
About a month after my diagnosis, I became aware that some of my Breast MDT were choosing options that they felt were easiest for me. These were all assumptions, they never discussed them with me first. At the beginning of the treatment plan, I was offered a lumpectomy which is a possible treatment for my type and stage of Breast Cancer (ER+ Stage 1b). However, one afternoon, a healthcare professional with whom I hadn’t previously spoken, called to say that the Breast MDT had agreed that I should undergo a mastectomy. I was shocked. I challenged the professional, expressing that the team had chosen what they thought was the easiest path for me without discussing it with me. The healthcare professional admitted to this. I refused a mastectomy on the grounds that I was already disabled enough – after all, I took pride and care over my appearance. Yet the healthcare professional insisted on this path of treatment, until I demanded a double mastectomy with an immediate breast reconstruction. The conversation ended there. I never spoke to that person again and there was no further discussion of a mastectomy.
Mammograms:
I’m a wheelchair user & I know that there are very few Breast Cancer Units that can meet my needs. I have a little strength in my legs, so I stand to have a mammogram. However, the Mammographer must be really quick – they get me into position, then quickly take the image, finally coming back to release me before I fall & nearly rip my boob off in the process. It’s farcical really. I always have to remind them that I can’t do the things that other people can because of my anatomy. My sternum protrudes. The grab handles on the machines aren’t really in the right place to aid my balance. The best Mammographers listen carefully. The ones that don’t hurt me. I always ask for just one person in the room after one recent experience where both staff were talking over me, treating me like it was my first mammogram (I wrote a blog about it & a trainee Mammographer trolled me about it on ‘X’, trying to deny my experience & then inferring that it could hurt the Mammographers back if only one performed the scan!) until one of them adjusted my face mask (yep, why I have no clue), accidentally poking me in the eye. I yelped in pain & that made them listen to me. For 20 years plus (I’ve been in the Breast Cancer Family History clinic since my thirties), I have been precariously balanced throughout the whole process. I’m mindful to guide the Mammographer to position me enough to get the scan, but also to take care that I don’t lose my balance. What’s become apparent in the last three years is that my ability to stand even for a few minutes is decreasing. I’m aging with my disability, but the Breast Cancer treatment is speeding up that process & my mobility is drastically affected. I often fall when doing a standing transfer from my wheelchair to the sofa, or into bed, so now I’ve got a small walking frame to steady myself. I had a really lovely lady for this year’s (2025) mammogram but even she scraped the tray down my thin-skinned chest wall which really hurt! I asked when the department was going to get wheelchair accessible mammogram machines & she told me that the local hospital where I had most of my treatment, already had one. I was astounded. My mammograms alternate between two hospitals. No one had brought the accessible machine to my attention. The Mammographer made a note on my file of my need for one in the future & I was told to follow up with my Breast Cancer nurse. The onus for requesting a reasonable adjustment falling to the disabled person once more!
Radiotherapy:
As a wheelchair user, the most challenging piece of equipment for me to access was the radiotherapy table. The table was way above my head and its height was fixed – non-adjustable beds are a nightmare for me. I ended up getting onto the table by hopping up two portable steps. However, two days into my treatment, I was told that there was in fact a hoist that I could have used to do safe & accessible transfers. This was at the hospital as the accessible mammogram machine – I’m sensing a theme here, lol! The other challenge for me was staying on the table for the treatment. The table is metal with fixed equipment that you’re strapped into. The idea is that when you’re strapped in with your arms above your head, you grip with your feet. However, I don’t have any grip because of paralysis & neuropathy. To get around this issue, a vacuum-packed ‘bag’ was placed on the table, then I got into it and the ‘bag’ was inflated and molded to my shape. The ‘bag’ effectively held me in place on the table for the duration of the radiotherapy treatment. It was labelled with my name, hung up on a rail & then this was wheeled in each time I had treatment. I had five sessions of partial radiotherapy, a session per day. This was to avoid any damage to my lungs. My lungs are of a regular size, but they’re in a very small space because of my scoliosis. They’re a little compromised. I’m pleased to say that five years later, my lungs aren’t affected at all by the radiotherapy treatment. At the time, partial radiotherapy had only just been introduced, so my oncologist was very pleased with the outcome – & I was relieved!
The Musings of Spu 