Sunday, 19 October 2014

Younger women with breast cancer - Sarah P's story

The first personal story I am featuring on my blog as part of breast cancer awareness month is from my good friend, fellow feminist and tumour twin Sarah Perry, aged 33:

More of Sarah's wonderful scribblings can be found on her blog.

'There were two things that brought me to the Breast Care Clinic at Glenfield Hospital for an ultrasound scan on 18th July 2014. A wonky nipple, and stubbornness.
I’d spent the last 18 months obsessing over cancer – and with good reason. On my mother’s side of my family, just looking at the women across 4 generations, this is what my family tree looked like:

·         My great grandmother – died of ovarian cancer in her 50s. Had one daughter...
·         My grandmother – diagnosed with breast cancer at 59, died at 66. Had one daughter...
·         My mother – diagnosed with inflammatory breast cancer at 47, died at 53. Had one daughter...
·         Me.

It actually wasn’t until my mom died at the end of 2012 that I started to panic about this pattern of cancer. I only have a small family, so the numbers aren’t huge – three cases of breast/ovarian cancer across three generations. When you start reading information online about hereditary breast and ovarian cancer you’re told everywhere you look that most breast and ovarian cancers aren’t hereditary, breast cancer is so common in the UK (1 in 8 women) that many families will have multiple cases of breast cancer within a family and that doesn’t mean anything, and you need at least two close relatives to have been diagnosed with breast cancer (mother, daughter, sister) to be considered for genetic testing.

But when I sat and thought about it, I wasn’t reassured. It might only be three women in my family across three generations, but they were the only three women in those generations! And my mom was young at diagnosis. Plus the combination of breast and ovarian cancer was a red flag. So at the start of 2013 I went to my GP and made my case to be referred to the Family History Service.
To try and cut a long story short this is what happened: The Family History Service referred me to the Genetics Clinic who thought the pattern of cancer in my family was suggestive of a fault in either the BRCA1 or BRCA2 genes. I had a genetic test and got my result in April 2014. It was an “uninformative” negative. This means that no fault was found, but as no living relatives with cancer were available for testing, they didn’t know if this was because there was a BRCA fault in my family which I was lucky and did not inherit, or if the cancers in my family were caused by an as yet unknown genetic problem which I could have inherited.
However, I was told that while I would still be considered high risk, having no faults in my BRCA1 or BRCA2 genes was very, very good news – they were the most likely offenders in my family and the most dangerous genes when it came to risk of breast and ovarian cancer. I was told I should be happy! I should relax now!

Yeah well, I wasn’t happy and I didn’t relax. I’d done my research, and while both breast and ovarian cancer in a family suggests a possible problem with the BRCA1 or BRCA2 genes, the specifics of the cancers in my family (detail I won’t go in to here) didn’t fit the profile. I was convinced that the cancers in my family were hereditary, but caused by another genetic problem.
At this point I think the people around me started considering my cancer worry as a mental health problem rather than a physical health problem. Oh if I had a pound for every time someone (who didn’t really know what they were talking about) told me not to worry, that the test result was good news, and that I should just put it out of my mind I’d be a millionaire! (Ok maybe a slight exaggeration but I’d certainly have enough for a bloody good night out.)
But remember, I’m stubborn. I have a mind of my own, and when it’s set on something, I’m not easily swayed or fobbed off. And in this situation, this might just have saved my life.
In July 2014, just three months after my good news genetic test result, I noticed my left nipple looked kind of wonky. It was really subtle. I wasn’t even sure myself if it had just always been that way or not. But being the cancer-obsessed-panicker that I had become, two days later I was showing it to my GP. She wasn’t worried, if there was a change it was probably hormonal and she said she’d look again in a few weeks. I went away. I wasn’t happy. I am stubborn. I called back and insisted on an urgent referral for an ultrasound scan to check it.
And that’s how I ended up at the Breast Care Clinic on 18th July for an ultrasound scan. A wonky nipple, and my own stubbornness. I had so many supposed reassurances – I definitely didn’t have a BRCA fault, I was only 33, the nipple change was subtle and no one could even feel a lump – but none of this mattered to me. I knew I was next on cancer’s hit list and I wasn’t going to ignore even the tiniest thing. The ultrasound scan which I was having for my own “peace of mind” (to shut me up) clearly showed a gnarly cancerous tumour. There was no mistaking it.
This was the one time in my life where I would have liked to have been wrong. I’d have liked nothing more than to have looked like a silly idiot that day, to have been over the top, to have to apologise for wasting people’s time. But (as always!) I was right. It’s a good job I was stubborn, it’s a good job I insisted on getting it checked right away. Time is everything when it comes to cancer. The earlier you catch it, the better.
If there were three things that I would want anyone who has read this far to take away from my experience they would be:

·         When it comes to your health, don’t ever, ever be fobbed off by anyone, including the doctors and experts. If there is something you are not happy with, or not sure about, get it checked. And if necessary, get it checked again, and again, and again, until you are satisfied. If you have a gut feeling about something, even if it doesn’t make sense or you can’t quite put your finger on it, you should listen to it and trust it.

·         Not all breast cancers are identified by a lump. Be aware of all the signs. Mine was a wonky nipple. My mom’s cancer was inflammatory breast cancer – signalled by changes to the skin. Know your own body well, know the signs well, be vigilant. Then if there are any changes caused by breast cancer, you’ll spot them early and probably save your own life.

·         Be aware of your family history of cancer. Don’t panic about it – most breast cancers really aren’t hereditary. I’m in an unlucky minority. But it’s sensible to be aware of any cancers in your family, so that if a pattern does emerge, you can let your GP know and take it from there.

Anyway, if you’re interested in any more of my own story, I’m blogging over at I’m writing about hereditary breast and ovarian cancer, and my own experiences since a cancer diagnosis. If you have any questions about hereditary breast and ovarian cancer please contact me via my blog, I’ll be happy to try and help if I can.'

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