Anonymous guest post
I was called back to my local breast screening centre after a mammogram. The letter said they needed to do some more tests before they could give me a result. I didn’t think too much of it. With the letter was an advice leaflet, which explained what might happen at the session, including all the tests that may be needed. I read this and felt quite confident to go to the centre. I’d always had good healthcare experiences so this wouldn’t be any different.
The leaflet said I may be offered a breast examination. I knew I definitely wouldn’t want this done by a man, however I didn’t worry about this either. I knew I was quite confident to stick up for myself and ask for a woman to do it if needed; no problem. I assumed that this would all be discussed when I got to the centre. I wasn’t expecting a long explanation, as obviously staff are busy, just a basic explanation would be fine. I checked the centre’s glossy website, which told me about the high standards they maintain at the centre, and how I’d be treated with care and consideration at all times. Overall I felt quite happy and confident going to the centre on my own; I didn’t even ask my husband to take time the morning off work to go with me.
When I arrived, I changed into a gown and had another mammogram with a radiographer. She was lovely and made me feel at ease. It turned out that there was a lump of calcium in my right breast, which needed investigating. I just went along with it and felt fine. I then went back to the waiting room, was called into a different room by a chaperone, and was told to sit on the bed to wait for the doctor. Within a few minutes a man walked in and introduced himself as a Consultant Breast Surgeon. I was taken aback by the fact he was male but again didn’t worry as I knew I’d ask for a woman to do the examination. I didn’t think it was needed anyway, as I’d checked my breasts the night before and knew there were no lumps in them, which I’d explain to him.
The doctor started looking at the computer screen and zooming in on the lump that was deep in my breast. He seemed quite detached and rushed, and asked me a few questions with his head down in my notes. I started to realise the lump on the screen looked like an early cancer, with a solid middle to it and fuzziness around the edge. I was starting to feel that this was all quite unreal, like I was dreaming and watching myself; not what I’d expected.
The doctor then came and stood right in front of me. He didn’t say anything and I felt really intimidated by his close proximity to me in my gown. I suddenly felt even more that I was observing myself and not really there. I was then asked to take my gown off by the chaperone. Time seemed to slow down. Surely this wasn’t happening; how do I get out of this? There was no explanation at all as to what was happening or what he was going to do, and no checking that I agreed. I was waiting for the doctor to explain, but I suddenly didn’t feel able to speak and stick up for myself. I felt cornered, and like I didn’t have a say in what was happening. I was so shocked, I just did what I was told. The breast surgeon looked at my breasts when I was sitting up, then the chaperone who was standing at the end of the bed asked me to lie down and the doctor started to feel my breasts, palpating and kneading them. Again I had this feeling of watching myself; a feeling of being hyper-aware of what was happening. I had no idea what he was doing, or whether he’d found anything abnormal. I felt like I wasn’t a proper human being; maybe I was just a slab of meat? Surely if I was a proper human being he would have the decency to explain what he was doing? Isn’t this my body, not his?
He then walked back to the computer screen and I was told to put my gown back on. Again, no word or explanation, just looking at the screen and explaining that the lump needed biopsying. I still felt really shocked, like I was dreaming. I felt a few inches tall. The doctor then dismissed me. I couldn’t wait to get out of the room as soon as I could. I felt really shaky and went to the toilet and cried. I tried to pull myself together before going back into the waiting room to wait for the biopsy. I felt really shaken by the complete lack of humanity I had experienced, but still thought I should just put up with it. Surely a reputable centre like this would do things properly. I must have got the wrong end of the stick.
After my biopsy – again done by some lovely, competent radiographers – I drove back to work still feeling like I was dreaming. I told a few trusted work colleagues what had just happened to me and they agreed that something had gone very wrong. They suggested that I write down my account of what happened to me straight away and so this is what I did. I felt very fortunate to have such supportive work colleagues.
For the next week, while I was waiting to see the breast surgeon again to get my biopsy result I still felt really shocked and spaced out. I felt completely OK at the prospect of having breast cancer – what will be will be. I just couldn’t believe I’d had an intimate examination, in a reputable clinic, without any consent or explanation and this should seemingly all be fine. I had difficulty sleeping, and once I was asleep would wake with nightmares. One of the recurrent nightmares involved this breast surgeon standing in front of me, and the feeling of being completely powerless and vulnerable. Another nightmare involved me being locked in a room with this man and trying to get out. I would wake in a panic. I couldn’t believe I had trusted people, I hadn’t stuck up for myself, and I’d been stupid enough to go to an appointment like this on my own.
The next week I steeled myself to go back to the clinic, to see the same breast surgeon for my biopsy results – this time with my husband and a clinic nurse there also. When the same doctor came into the room, he started talking in a monotone voice about my abnormal cells and how they needed to be removed under general anaesthetic. Again I could feel myself going into shocked, mute mode; it was like talking with a robot. I steeled myself to ask him for a different breast surgeon, as I didn’t want this man anywhere near me. When I asked him this, he just stared at me and asked me what difference it would make who did my operation as I would be under general anaesthetic! I couldn’t believe anyone could be so nasty to someone going through this. I explained that he hadn’t explained anything to me during the examination, and that it had been a horrible experience. He just sat there and stared at me, though to my great relief he then walked out and found a different surgeon – a kind, competent woman with whom I knew I would have a totally different experience.
Over the next few months I had two operations to remove early breast cancer, all fine and pain free. During this time I tried to bring up the experience I’d had with the original doctor with the staff I met along the way. I sensed a definite brick wall. There seemed to be a conspiracy of silence. I was still having regular nightmares, flashbacks and couldn’t concentrate but no one seemed to be interested. No one wanted to know.
Once I got to the end of my treatment, as I had got nowhere, I decided to go down the formal complaints route. This was to try to resolve this in my mind and to ensure that changes were made in the department so that my experience never happened to another woman. It’s called ‘putting things right’. The experience I had during this process was highly traumatic, with a succession of avoidant and evasive letters, which took months to arrive and largely avoided the focus of my complaint, cleverly side-stepping around the issues. Lots about sorry for my distress, but hardly any definitive information about why things had been the way they had for me and what they would do about it. The process seems to have little to do with ‘putting things right’.
All in all, what I would advise other women after this horrible experience is that just because you’re the patient, sitting there in your gown, and he’s the consultant, you’re still a human who is worthy of respect. Stick up for yourself and whatever you do, don’t go to an appointment like this on your own. Take someone you trust with you, who can speak up for you if you can’t. I deluded myself that I would be treated properly and I will be careful who to trust in future.