What cancer were you diagnosed with?

Composite Chromophobe Carcinoma Oncocytoma – rare Kidney Cancer

What age were you diagnosed?


What has helped you to thrive?

I have a really close group of friends and family who have been there throughout, many of them medical so they understand things without me needing to explain much. In the days after I came home, they helped drive us around the corner to the GP surgery, sort out leaky bandages, stayed through tears and laughter – and they’ve been there consistently for me.

My husband is also very level headed and chilled out, so he has been my rock throughout it all and talks sense to my worries and insecurities. I have discovered the joy of working 4 days a week and the benefit of having an extra day to rest and swim. As the surgery was so invasive, and I’ve had previous injuries, I experience periods of chronic back pain and sciatica, so the extra time off helps manage this too. We also create lots of memories – gigs, coffee and beer festivals, road trips around Europe – which helps keep the focus on the present rather than the what ifs.

Rachel's Story

My family has a couple of hereditary health conditions, the main one being Polycystic Kidney Disease, which a few members of my immediate family have. As symptoms don’t show up until adulthood, I held off going to the GP about it as I didn’t have any. None whatsoever. I got married early 2016 and heard during the summer that a cousin had been diagnosed with PCKD, so I started the process of getting checked out – just in case. I had an ultrasound in September 2016, which found a massive lump in my right kidney (11x9 cm), so I was referred for more tests and a CT Scan. March 2017, I was told that I might have cancer and they wanted to remove my whole kidney and check it hadn’t spread. 2 weeks later I was recovering in hospital, hoping to be out for our first wedding anniversary.

After the operation, it took a year to confirm my diagnosis. My case was referred to specialist consultants in Edinburgh and Switzerland to try and determine what renal cancer I had. I was also getting checked through Genetics to test for PCKD and any other condition that may explain it. I was eventually diagnosed with composite chromophobe carcinoma oncocytoma, which is basically a really rare type of kidney cancer linked to a rare genetic disorder called Birt-Hogg-Dube syndrome. As it’s a slow-growing cancer, they think I’d had it for years and I was lucky that it hadn’t spread in my body. I now have to have yearly scans and so far I’m in remission still, and my remaining kidney function is normal.

My Dad has since been diagnosed with Birt-Hogg-Dube Syndrome and has had a kidney tumour removed after scans from a cycling accident showed a small lump, so there’s now kidney issues on both sides of my family! I feel really lucky that I have needed no further treatment and that I went to get checked out when I did as I may not have noticed any symptoms until it was too late.