Dr Kathleen Thompson found breast cancer bewildering and frightening, despite her medical training.
Like for most people, breast cancer came as a shock, catapulting me into a whirlpool of tests, hospital visits and more tests – a bewildering new world.
In some ways my medical knowledge helped, but I was shocked and frightened, and in any case, my specialist areas were paediatrics and research, not cancer.
I probably felt most lost when, after weeks of investigations, my specialist asked me to choose my operation. She could remove the tumour alone (wide local excision), or remove the whole breast (mastectomy) and reconstruct a new one.
I was confused. I didn’t know enough about the options. I asked for more information, but she didn’t really explain – she seemed to be expecting an answer. Her clinic was busy – maybe she thought she’d already described the choices. Maybe she thought she didn’t need to.
In the end, still feeling unsure, I suggested she just remove the tumour. She seemed pleased I’d made a decision, but then she warned me it would leave scar tissue, and I would need radiotherapy. Some tumour might be left behind, meaning I would need a further operation.
It all sounded negative. Maybe she was steering me towards a mastectomy with reconstruction? I asked about this option.
She told me that I could have an artificial implant, or she could use muscle and fat from my back to fashion a new breast (LD flap). Or I could have a DIEP flap, where tummy fat was used for the breast.
I’d heard that implants looked unnatural in older women. The LD flap sounded lop-sided and could leave some weakness. However, the DIEP-flap (boob job and tummy tuck) sounded appealing. I could certainly spare some belly fat, and it would look good cosmetically.
I told her my decision. I felt relieved. I was confident I’d made a good choice. But then she told me that she couldn’t offer this operation – I would need to see a plastic surgeon. I was terrified of delaying my life-saving surgery, so I dismissed the idea. It had seemed too good to be true anyway.
So what should I decide? She’d painted a negative picture of the wide local excision, but the only available reconstructions weren’t great either.
I felt weary. I asked more questions, but her explanations just didn’t make sense.
She didn’t seem to understand my confusion. I knew her clinic should have finished hours ago. My palms were damp, I could feel my heart racing. I tried to focus. I needed to make a critical decision in minutes, yet I couldn’t even have decided between a cappuccino or espresso.
In the end, I made one of the most important decisions of my life on little more than the toss of a coin. I chose the tumour removal. I crossed my fingers that her pessimistic warnings were overstated. I felt so empty.
This may sound shocking, but I’d have put more thought into buying a microwave. And I was a doctor – it was my world. Why was it so hard?
Faced with cancer, we don’t always think rationally. We don’t always understand what is happening, and it is hard to challenge the doctor who, after all, is saving our life.
I felt pressurised because the clinic was running late. But that wasn’t my fault. I should have insisted on a clear explanation. It was my cancer, my life. I needed to understand the implications of my choices. And I’m sure my doctor would have been horrified if she’d realised how I felt.
So many of us put on a brave face and don’t demand what we need, even when we have cancer.
Breast cancer guide
This and other experiences made me understand the importance of a 'going through breast cancer' guide.
It provides essential information, using my personal experiences, plus medical and research expertise, to guide the reader through breast cancer: the tests, the treatments, decisions, the emotional side, what to do when things go wrong or mistakes are made, and how to stand up for your needs. I explain why we get cancer and how to reduce the risk, and how to assess the validity of media-based ‘cancer claims’.
From both ends of the stethoscope – getting through breast cancer by a doctor who knows by Dr Kathleen Thompson won first place in the Words for the Wounded charity book competition, and is available from bookshops (ISBN: 978-0-9935083-0-1) or through Amazon.