Lauren's Story

In October 2021, took the kids to school and returned home to work as it was the second lockdown.

Within 30 minutes, my right leg began to feel strange. It was becoming purple and swelling up. I called 111 who advised the local hospital. On arrival they called 999 and I was rushed to A&E where they said I had a DVT.

They took several scans but nothing was untoward. We were not happy with the lack of care or urgency so contacted another hospital for a second opinion. They transferred me to them and treated me for the DVT and carried out further scans. Finally they traced the blockage up through my inferior vena cava where there was a shadow around my stomach. It was 2 weeks before I went home and saw the children (then 13 and 16yrs).

A biopsy confirmed leiomyosarcoma (LMS). 1/100,000 people are diagnosed with it.
I was referred to The Royal Marsden in Chelsea and was seen within 2 weeks. We had to read up on this rare type of Sarcoma and found that even the GPs may not be familiar with the term.
I was told that the only way to deal with LMS is surgery but that comes with a 5% fatality rate.

My consultant saw my worried look and said to look at the figures in a different way. Without surgery I had 100% chance of dying but with surgery I had 95% chance of living. The surgery was booked but I agreed to go on a blind trial, which meant chemotherapy before surgery. I had 3 rounds of Doxorubicin and Dacarbizine which made all my hair fall out and I was very sick and weak.

Once I had my strength back, I had surgery to completely remove my inferior vena cava and my right kidney. The surgery took over 7 hours and I was told I'd be sitting up the second day. When I woke, I found out it was 4 days later as my heart was struggling with the recovery of surgery. I was in ICU a total of 12 days before I was allowed on the ward. I was in terrible pain and could barely move.

As the hospital was still following lockdown rules, the children hadn't been allowed to visit and being a 2 hr journey away, my husband had to take time off work to travel up for the one hour allowed. Sometimes my mum would come instead, and I cherished those times of the day.
It was a long road to recovery and my right leg became more painful. Pain from my vein in leg not recovering from DVT and also arthritis in the hip.
I had scans every 2 months but 6 months later I was told the 'good news' was that LMS had not spread any where around my body but unfortunately there was local recurrence in the short stump of the IVC where it was next to my heart.

It was inoperable and I was now no longer part of the clinical trial. We went home in silence not knowing what to say. Continuing with the bimonthly scans, it was a year later that leiomyosarcoma was found in my lungs and liver and I needed to start chemotherapy immediately.

It would be for the rest of my life. I'm on a 24hr infusion every 4 weeks of Trabectadin. I am grateful it hasn't caused my hair to fall out as I'm loving my chemo curls.

Today I was due to find out if the consultant was to book in surgery to have the metastases removed from my liver but unfortunately my latest scan results were not back in time.

Throughout my journey I've tried to be as positive as I can and it's making sure that the children, although informed, do not feel the full impact that cancer has caused in our lives. We have a lot more time together and this weekend at Ben's Retreat is a perfect way to spend time chilling.