Reflecting on the ‘call back’ experience

October 12 2015

By Rachel Plachcinski

We’re delighted to welcome another guest post written by one of the WOMMeN hub group team. Rachel is a health professional but was new to mammography when she attended her first screening appointment. Here is her story..

Three months ago I received an invitation to attend for breast screening at my local hospital. It was something of a surprise, as I’m only 47, but after only a little thought I decided to take up the offer. After a second scan at the specialist regional unit I was given the all-clear – all over and done in just a couple of weeks. I received a fast, efficient and kind service, received all manner of useful advice and support from friends and benefitted from some virtual handholding from the WoMMeN Hub Facebook page – yet I emerged from the experience spitting with fury, with doubts about my ability to monitor my own health, reservations about the usefulness of mass screening programmes and an aversion to being hugged by my husband which lasted a month.

So why did I end up feeling like this? After all, I know about health. I have a masters degree in health psychology and work in health education and research for a national charity. A large part of my working life is spent talking to women about elements of reproductive health, providing information and support to enable them to make informed choices, and encouraging patient involvement in research projects and the development of health services. I am not a health novice, and I know how to get the most out of encounters with health care professionals.

My first mammogram was straightforward. I took the advice of friends and remembered to take ibuprofen before I went in and, although many women had described the process to me as ‘uncomfortable’, I wouldn’t even say that. If anything, holding the pose and the compression reminded me of having to hold a challenging yoga pose for a little too long.

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Holding a difficult yoga pose. Photo courtesy of www.flickr.com/photos/daverose215 http://bit.ly/1jrI5Qs

 

The most stressful part of the experience was finding out I’d parked at the wrong side of the hospital site and having to jog along long corridors to make it to my appointment in time! It’s a little weird having to strip to the waist in a giant container, but I came out feeling confident that it was all just routine and I’d be fine. I felt healthy, I’m not that old, I examine my breasts fairly regularly, don’t smoke, hardly ever drink, there’s no history of breast cancer in my family and I breastfed each of my three babies for at least three months. Low risk, right?

I was consequently shocked to be recalled for a second mammogram at the regional breast cancer unit in Bradford. I was quite desperate to speak to someone about what they’d found, as I had a week’s holiday booked and couldn’t make the first appointment I was offered. A nurse phoned me back to say there was something very small on the scan which they wanted to check out, but this wasn’t particularly reassuring as I don’t know much about breast problems and I had no idea what it meant. I managed to put it out of my mind for most of my holiday but then had an emotional meltdown the day before we came back. If I’d been at home I would have talked to/ sobbed over close female friends but as I was in a remote part of Wales with no mobile phone signal my husband had to cope on his own! Our youngest son was with us, but I didn’t think it was fair to sob “I might be about to die!” over a 19-year-old.

Anyway, once back home off I went for the second scan. To my great surprise I was in and out in less than an hour. Had the mammogram and then a physical examination by a female doctor. All that upset over what must be the tiniest speck of calcium ever. Everyone was very kind, and emphasised that I should get back in touch if I had any worries, but I came out with my head in a whirl from all the things I wanted to (and had expected to) discuss but couldn’t. Why did no one ask about family history? Why did no one ask about my breastfeeding story? I’d had a burst blood vessel in my breast when feeding my first baby, and mastitis when feeding number three – could that have contributed to the calcium? But no one was interested. No one wanted to educate me about how breasts work and how they change over time, no one talked me through potential signs of breast cancer and, biggest omission of all in my book, no one checked my self-examination technique.

No one wanted to know about anything else to do with my body, or my family or my general health. All the focus was on my breasts and the possibility of cancer, and I came away feeling like I had a pair of unexploded bombs strapped to the front of my body. They were no longer the lovely soft things which entertain me (and my husband) and had nurtured my children; instead they were a potential threat to my life.

A few friends think I am overreacting, saying things like “but if they’d found you did have cancer you’d have been really grateful”. Perhaps I would, but my chances of it must be so low that I don’t think the mammogram was worth that much upset. I’m very reluctant to go through this process again in three years or so, however I could change my mind if someone found the time to sit down with me, talk about the health of all of me and give me some proper numbers about my likely risk of breast cancer and other menopausal health issues.

There’s been a lot happening and changing in my life in the last couple of years, both physical and emotional. Children growing up and moving on, peri-menopause and feeling the changes in my body and brain, parental illness and death (my mother-in-law and my father died within two weeks of one another at the end of last year, and my mother has early onset dementia plus anxiety and depression). These are common themes for many women in their late 40s and early 50s, and we want to talk about them and the impact they have on our health. I firmly believe that this is a key ‘teachable moment’ in a woman’s life, and if the health service seriously wants to reduce cancer deaths why not use this time (and established screening system) to look at the whole woman and support her, in a non-judgmental way, to work out how to make changes which will improve her health now and in the future.

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A Bridge over Diagnosis courtesy of McCormack, J. http://bit.ly/1wWNy7C

As I flailed around in the immediate aftermath of my mammogram journey, trying to find information that would help me make sense of the experience, I came across this film on YouTube, and I loved it. https://www.youtube.com/watch?v=gfesuNG0-kQ It made me laugh (always a good thing), It gave me some solid numbers (albeit not about breast cancer) and it has personal resonance (my dad listened to that album all the time when I was growing up). In fact, maybe I should carry a card to all medical appointments in future to remind me to demand jokes, hard facts and personal context.

Thank you Rachel for sharing candidly the experience of being ‘called back’ and outlining some changes, which may have improved the experience for you.

Have you had a ‘call back’? What were the first questions you wanted answers to?

Do you have any thoughts on how the ‘call back’ experience could be improved? 

 

 

 

 

 

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