Living with Cowdens

The story of Kate

Growing up I have always had lumps and bumps. Odd things doctors couldnt explain. When I was ten, I had a massive vascular overgrowth removed from my left leg. The doctors back then didn’t actually have a name for it but I know now it was an arteriovenous malformation. 

Since then I have had two seperate diagnosis of breast cancer seven years apart. Both resulted in mastectomy and chemotherapy and radiation in 2012. In 2019 I had DCIS so surgery was all I needed. At this stage I thought my cancers might have been a BRCA gene default but with no family history of breast cancer I couldn’t access testing without it costing thousands.

I have two beautiful children, Josh 15 and Jenna 11. They have also been battling AVMs and our PTEN diagnosis came after Josh had a AVM removed from his left leg weighing a whopping 1.7kg. It was after this surgery we were referred to genetics. Blood testing occurred in October 2019 but because Josh accesses medical care in Melbourne, Victoria and we reside in South Australia we had to wait for funding to be approved. This took approximately 9 months and in July 2020 we found out Josh had Cowdens Syndrome. Jenna’s positive test came through about 6 weeks later and by October 2020 I was also diagnosed.

To say it was a whirlwind was an understatement. Not only did we have to cope with COVID we had this to now deal with too! In December 2020 I had my thyroid removed due to Hurthle cells growing in it and am now managing thyroxine also.

Cowdens is a challenge, there are lots of regular testing and the anxiety that goes with that. My husband Mike is my rock and helps us get through all the hard stuff. Despite this, we are warriors and are choosing to smile and make the most of life. Both children have sport to keep them occupied and are loving life. Together we are #cowdenstrong.