This blog post is part of a series of patient stories taken from interviews conducted with volunteers who had responded to the All.Can patient survey. Some information has been changed to protect anonymity.
It took about four or five months from my first having symptoms to finding out I had cancer. It began when I felt a lump in my left breast. I knew it could be a sign of cancer, but also that it could be something else entirely. As a precaution, I went to my GP; she reassured me but still recommended a mammogram. She didn’t seem worried.
I have a disability which means I have trouble moving, so my daughter usually drives me around. She had recently been hospitalised at this point, so I waited several months before going for the exam. When I eventually went, I had broken my ribs in a fall so could only have an ultrasound. As soon as I saw the radiologist’s face, I knew something was wrong. She told me that I had to have a biopsy.
‘I was glad to be told right away’
After the biopsy, the radiologist told me to phone her a few days later. When I called, she told me I had cancer and needed to contact my GP. I was glad to be told right away like this, even though it was over the phone and rather direct, because my GP was on leave so I don’t know how long I might have had to wait otherwise. Because I knew it was cancer, my daughter made an appointment for me to see her gynaecologist so I wouldn’t have to wait for my GP to return.
The gynaecologist contacted the director of the breast clinic at the same hospital and, when I went to this appointment, they were both present. I was then put in the hands of a nurse for the coordination of my appointments and, the very same day, I had all the complementary examinations immediately: mammography, ultrasound and so on. They discovered a lesion in the right breast as well, so I had a biopsy for each breast.
I was told that my tumour was hormone-dependent and wouldn’t require chemotherapy, but this was before the results came in so they would not have known. When I later saw the surgeon, she explained everything to me.
The oncologist told me I had a tumour of 4cm on the left breast, and a slightly smaller on the right breast. I wanted to have my left breast removed, not a lumpectomy, but the oncologist decided otherwise. I was not allowed to choose.
I didn’t try to get a second opinion or go somewhere else because this hospital was very welcoming. I felt listened to and completely supported, so I absolutely trusted them. Now, though, the same oncologist is no longer available – the system in that hospital means the oncologist only supports you during treatment, then you have to see the surgeon for follow-up.
‘I would have preferred that all the follow-up go through the oncologist’
I felt misled by some of the healthcare professionals. I asked the radiotherapist whether I would have problems swallowing, and he said no – he told me the side effects would be limited to redness. But I later did have this problem, and another radiotherapist confirmed that it’s very common. I also have pulmonary sequelae due to radiotherapy combined with chemotherapy; I saw two pulmonologists who confirmed this, but my oncologist said it has nothing to do with the treatments. It’s confusing and upsetting to get such mixed messages – it feels like people aren’t being honest with me.
I have problems with my left arm now – the surgeon told me after the surgery that he had damaged some nerves. At the time, he was kind and understanding. But now I feel unsupported – he just tells me to just take painkillers.
I would have preferred that all the follow-up go through the oncologist, because she was the warmest and most human of all the team.
‘My family and friends didn’t want to talk about it’
I couldn’t talk about my cancer with my family or friends because they didn’t want to talk about it. My family did not want to talk to a psychologist, either. I was offered psychological support after the first chemotherapy session; I said I didn’t need it, but now I regret that. I didn’t think I needed it at the time, but I definitely needed it later, after all my treatments were finished. By that point, though, I couldn’t go to see the psychologist because I live far from the hospital and couldn’t afford the journey. I regret not agreeing to see a psychologist when I had the chance.
* Names and some other identifying elements have been changed to protect patients’ anonymity.