Alison’s breast cancer story shows how miscommunication has a long-lasting impact on emotional well-being and perception of care. Here’s Alison’s story and what she wants patients and healthcare professionals to learn from it.
Reflecting on my breast cancer diagnosis experience, I can see that it was done carefully as a consultant surgeon and a breast care nurse gave me a reasonable amount of information. They told me I would need a course of chemotherapy first, and an operation would follow this to remove any remaining cancer from my breast. If they could remove my cancer, they would put a clip in to mark the spot where the cancer had sat. There was a good possibility; I would be cancer-free.
I was so relieved with this treatment plan because I had a phobia of losing my breast (mastectomy). The doctor told me that even if the chemo didn’t work as well as we had hoped and a mastectomy was needed, I would be able to have immediate reconstructive surgery (to make a new breast shape). With a sigh of relief, I left this consultation feeling confident and optimistic about my treatment and future.
So, treatment begins. I had an initial MRI (a type of scan). Cancer doctors monitor these scans before, during and after treatment to measure their success in reducing cancer. After the MRI scan, I started chemotherapy at the local cancer hospital. I had another MRI early in cycle three and after cycle four. The doctor told me face to face that my treatment had been 100% successful, and the results showed no cancer. You can imagine how relieved and happy I felt. The next step was to book an appointment with the surgeon to talk about surgical options.
The Diagnosis: Feeling Completely Mislead
In between seeing the surgeon, there were lots of administration errors that delayed my appointment. I had to insist on seeing the surgeon. By the time I saw the surgeon (a different doctor to the one I saw initially), I was already distressed and anxious.
When I arrived, he told me I had no choice – I had to have a mastectomy, and there was no option of immediate reconstruction. This news came out of the blue. Previous doctors had told me I only needed a mastectomy if cancer remained. But I had been told this had gone by the cancer doctor. I felt utterly mislead and confused.
I was devastated. But here I was, and despite my fears, I had the surgery – I had no other choices.
Eighteen months later, when I queried why there was a sudden U-turn in my treatment path- I was told that the MRI I had a few days after my diagnosis had shown more cancer. They thought it might have been inflammatory cancer, so they changed the treatment plan and decided I needed to have a mastectomy after the chemotherapy. This information was never shared with me. At no point was I informed that my cancer was more extensive or that I would need a mastectomy. If I hadn’t asked the question now, I still don’t think anyone would have told me. I felt utterly deceived, and they failed to inform me about what was going on in my body.
The Lasting impact:
“This was the point that I lost faith in being cared for, and I have never got that back.”
I had reconstructive surgery four years ago now. It may sound ridiculous, but I still feel sick to my stomach that I was deceived from the outset of my care.
I know logically that the MRI scan results meant a change in my treatment plan was required, but no one told me. I only found out because I insisted on having another appointment to discuss my surgery options. Was it too much to expect, to be involved in making decisions about my care? And what directly happened to me?
I have had so many disappointments, misleading admin errors and miscommunication throughout my cancer journey. I lost faith in being cared for, and I have never got that back.
What do I want healthcare professionals to learn?
Realise the patients hear essential information from you and take them as facts until you say otherwise. So be aware of the power you hold as a professional and the effects miscommunication can have.
Check that the letters you are sending out are not misleading as they might lead to miscommunication. One mistake gave me such crushing, overwhelming disappointment that I became suicidal.
Your patients have seen other professionals before you, and those other professionals have given different information. Check what a patient already knows and how involved they want to be, making decisions about their care. All you have to do is ask.
You could use the consultation support tool to help prevent such errors of miscommunication:
What do I want other patients to learn?
Your healthcare team are experts, but they do not know everything. Ask them about what they do not know as much as what they do.
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