It was just before Christmas 2009. I had been hospitalised with pneumonia for a week. I had lost a lot of weight due to being so ill. The day I was discharged from hospital I was just walking through my house and I put my hands on my hips. There I felt it…the lump that would forever change my life. It wasn’t prominent, wasn’t big and I wasn’t too alarmed. If I hadn’t been so thin at the time I would never have felt it.
Tests revealed it was the very rare desmoid tumor. Located in my left flank, just above by hip. Knowing nothing I went into research-mode. I was under the care of an oncologist who knew very little about desmoids tumors, but who went the extra mile to find out, get outside opinions and help me the very best he could.
After growing to the size of a tennis ball in only 3 months I had to make a decision on treatment. At the time my 3 children were only 3, 5 and 7 years old and I was (still are) running a very busy salon. I thought ‘so, okay I don’t have time to be sick, I’ll get it removed and I’ll move on with my life’. How wrong I was!
I had it removed surgically in May 2010. The surgeon said it all went well and he got clear margins.
In August that year (only 3 months after the surgery) I had a follow up MRI, which showed another desmoid had grown. This one was twice as big. It was a huge let down as I had only just recovered from the surgery. It was on the edge of where the first tumor was cut out.
We watched it for about 6 months but it continued to grow so I had 6 weeks of radiotherapy in May 2011. Which made me extremely ill and tired.
It worked, that tumor stopped growing. However in September 2012 I was diagnosed with another 2 tumors around the same area. One has attached itself to two ribs. We are monitoring this tumor closely as surgery to remove it would be very damaging and aggressive. The doctor now says the best way to get the disease out of my body would be to remove all of the tissue and muscle in the left side of my body, taking out 2 ribs and re-building my body with mesh and tissue from elsewhere from my body. Not thrilled with the prospect of this I have decided to stay on a ‘watch and wait’ approach. My last scan showed no growth, So, I get to wait another 3 months before deciding on an approach to handle these tumors.
I have changed my diet and now try and eat majority of alkaline foods. I used to be very active and exercise was a big part of my life. However now doing anything too strenuous leaves me in pain. So exercise is now out of the question.
Life will never be the same as I’m always feeling for lumps and bumps and any sort of (extra) pain sends me into panic and fear of more tumors. My desmoid tumor story may never end, for most this disease is ongoing. For now, the prospect of one day finding a cure is all us Desmoidians can hope for.