My journey to HLRCC

The story of Clare

I was 24 when I first started having ‘women’s issues’ I could feel a lump in my lower abdomen and the GP diagnosed Fibroids, eventually after a lot of trips to Gynae, ultrasounds and MRI’s I had my first surgery, I had a Myomectomy to remove them and the surgery which was supposed to last 2 hours took 4. I lost a lot of blood and couldn’t eat or get out of bed for 4 days until they finally transfused me when my blood count didnt increase. 2 years later and the fibroids where back again, they were aggressive and made me look constantly pregnant. My consultant suggested Uterine Artery Embolization, a procedure that puts plastic beads into your femoral arteries and cuts of the Fibroids blood supply so they immediately start to die, it was painful and done whislt I was awake,. It was meant to stop any new Fibroids growing in my uterus but after another 3 years I fetl a lump again, I went to a different hospital this time and the consultation told me I had fibroids growing in my abdominal cavity, there was only one way to stop this now, Hysterectomy, even though I had no children I knew this was the right decision for me to make and had it done at 34.
I thought at this time it was the end of my visits to the hospital.
I cant remember how long I have had the skin bumps or leiomyoma, they started on my leg and I saw a dermatologist who didnt know what they were and he wasnt concerned so I was happy enough with that. Over the years more and more of these lumps popped up, I had some painful ones removed from my leg, arm and shoulder. Still they kept appearing so in 2014 I started searching on the internet and discovererd HLRCC which stands for Hereditary leiomyomatosis and renal cell cancer syndrome. On a website I found a handbook describing HLRCC so I contacted the vice chair, he told me what to do to approach my GP.
I went to my GP and told him about HLRCC, he didnt know what it was but he listened and referred me to a geneticist who confirmed that I did have it.
Luckily for me it doesnt make that much difference to my life, I am very healthy and happy, I have an MRI scan yearly to check my kidneys as there is a higher risk of cancer associated to the condition because of a gene mutation to the gene which prevents you getting tumors. It was a shock at first, especially as the words ‘cancer’, tumor’ and ‘metastasis’ came up in the handbook, but I know where to go for information and that there are people to help if needed so I can live my life as normal and relatively worry free.