My Adventures with Ultrasound: A Patient Perspective #MUAM

Published: 19 October 2018 Advanced practitioners

"For Medical Ultrasound Awareness Month #MUAM we wanted to include an article from the patient’s perspective. We would like to thank Anise for submitting the following, which is her experience of having ultrasound scans for breast cancer. It is well worth reading. Anise has written a moving poem for sonographers at the end."

Nigel Thomson, professional officer for ultrasound.

Twelve years ago I had my first ultrasound. I was pregnant. The scan was exciting, almost miraculous. I got to see my tiny baby and know that I wasn’t just carrying round a big hairball.

This kind of ultrasound is joyous. It’s an image that you have a copy of and share with all your friends and family. Each scan throughout the pregnancy reveals a little more until you meet your baby for real. My daughter was born safe and well.

Two years later I was pregnant again. This time I was puking everywhere and feeling horrendous. At three months the sonographer showed me a picture of my baby and said to me, “I can tell you why you’ve been feeling so sick.” Immediately I think, "What can being sick show about a baby? Does it have no head or something?"

She pans back and announces that there are two babies. It was wonderful and alarming! My two daughters were born safe and well.

Another two years later, I discover that I have a lumpy breast. At the hospital one stop clinic, the doctor sends me off for an ultrasound with a needle biopsy. I remember being in total denial about what it could be. In the waiting room I’m thinking about work and where I need to be after this.

During the scan, I looked at the screen of the ultrasound and it is grey and empty. There’s no baby. There’s no joy. No-one will be asking to see my scan photos after this. It felt disorientating. Instead of looking for life, they’re looking for death. And they found it, five centimetres of cancer.

After a full body scan to look for any further cancer, I had to have an ultrasound of my liver. Two people did a thorough search of my liver and made me hold my breath a lot, occasionally forgetting to let me breathe. They left me in a darkened room with a gown on for a long time. That’s inevitably stressful. At last they found a very tiny birthmark on my liver.

I have a heart murmur. Before sending me off to have my mastectomy I had a heart ultrasound. It wasn’t my best ultrasound experience. Instead of a room, this was on a bed behind a curtain. The scan person was talking to someone else as she came in and throughout she seemed distracted and not much interested in how a person was attached to this heart. I was on a conveyer belt of heart scans. 

Over the next year I had a mastectomy, chemotherapy, radiotherapy followed by 12 months of Herceptin infusions. I had lots more scans and tests and ultrasounds.

And I changed. From someone who did what I was told in the hospital to someone who is demanding and grouchy.  I refuse to wear the hospital gown. I say no and ask why and I find all medical procedures uncomfortable and invasive and I will complain.

Fortunately, I’m cancer free now and my family and I are all healthy. I’m thankful for the treatment and support I’ve received and of course, for the NHS. There are still some symptoms from the treatment that I have to contend with and there’s always the risk that it will come back. I’m sure there will be more ultrasound in my future.

Here are some things I’d like sonographers to know:

  • Ultrasound is one of my preferred medical procedures. It’s one of the few tests that generally don’t cause pain, or involve needles, or side effects. However, I didn’t necessarily have all the information about what a procedure would entail until the actual scan
  • A scan may be an everyday experience for you. For me, it’s completely out of the ordinary and can be ultimately life changing.
  • The hospital may be a familiar workplace for you. For me, it’s a place that makes me feel uncomfortable, that I don’t understand and that I don’t want to be in.
  • The hospital gown is dehumanising. Being naked or half naked is undignified and exposing. It’s a situation that immediately makes me feel trapped and powerless.
  • Communication is absolutely fundamental. Communication starts from the moment I arrive in the waiting room. I would like all the staff to be confident, reassuring and kind.
  • I need to know the basics of what will happen during the scan before I have to take my clothes off or lie down.
  • Most of the time I felt very unwell when I had a scan. Just waiting or sitting was painful and exhausting and now it’s also emotionally gruelling.
  • During the ultrasound, you can see something wrong, or that all is well long before I know about it. The screen means next to nothing to me. I’m scrutinising your face, the noises you make, the gaps between my question and your answer, your tone of voice, and how you speak to your colleagues. I’m reading you maybe in the way that you’re reading my scan.

Just a scan
There is no such thing as ‘just a scan’
A scan is a story
With a life changing message

You are the storyteller
Making and breaking our dreams
Realising our hopes and fears
Giving us the life affirming reassurance that we will be ok

You are the first to confirm a new beginning
The end of a beginning
Or the beginning of the end

We come to you
Stressed out
Or simply unaware
And we leave changed
Because there is no such thing as ‘just a scan’