I'm just wondering if anyone has any experience of this rare tumour - there is a high probability I have a large one in my abdominal wall.
I am 35 and when I was 30 I was diagnosed with MS. It took a long time to get used to but I did and I went on treatment and it has been in remission for years. I had my first child when I was 32 and then lost 2 babies in pregnancy. One of these was a termination because the baby was so poorly. This hit me very hard and I think I am still coming to terms with it.
I then had my son which was a really tough pregnancy. At 32 weeks a 'thing' was visualised on an ultrasound which they thought was a hematoma. They weren't worried and decided to follow up after his birth. I was sent for an MRI 2 weeks ago and have been told the 'thing' is probably a desmoid tumour and I am awaiting biopsy.
From what I have learned, although they are not cancer in that they can't spread, they behave a lot like cancer in the area they are in, for me the abdominal wall. They can grow very quickly and aggressively causing severe pain and invading blood vessels and nearby organs. They can be fatal and the treatments to shrink them are unpleasant e.g. chemo, cancer meds, rqdiotherapy.
I am in the period where I am very angry. My son is only 10 weeks old and I thought things would now settle after a difficult few years but instead there is something else I need to come to terms with and fight.
Sorry for the pity party. Does anyone have any experience of these tumours? 5-7 people per million are diagnosed with them each year.