"Misdiagnosed fibroid"

Recently I had been diagnosed with Uterine Leiomyosarcoma - a rare and aggressive cancer.  It was confirmed once I had a total abdominal hysterectomy and was found with other benign tumours and a high-grade malignant tumour of 11cm with a 5mm margin.

Pre-op, intuitively, I knew I was very unwell and presented to my GP with a palpable mass which was rapidly growing. I was experiencing malaise and fatigue, dizziness.  I had 6 months of women's health issues with evidence of CT and ultrasound scans to show rapid growth over that period. I was referred to a GYN Specialist through a clinic at Fiona Stanley, who had categorised it as Cat 2 (30-90 day) elective surgery to have a hysterectomy.

I had great concerns about this being cancer, had asked if it was Leiomyosarcoma and the surgeon seemed to have laughed it off saying statistics are like 1 in 1000, you don’t have cancer. Surgery had not yet been booked in. The growth continued to grow, I felt worse and presented myself to King Edward Medical Hospital ED, who sent me away with no further tests and felt dismissed. 

I presented myself to Fiona Stanley Hospital about 2 weeks later with a day of heavy bleeding/haemorrhaging - again was sent away with no further follow-up.  

The following week, further heavy bleeding and haemorrhaging/large clots. I look 6 months pregnant. Rang waitlist at Fremantle Hospital with concerns of needing surgery urgently. I feel the surgeon was not concerned, the date was not yet booked. Rang again - I believe I really need to get this out, can another surgeon do it? Went to GP for 2nd opinion, to Sarcoma State Service Registrar Nurse, who rang Fremantle Hospital to expedite. GP also told me stats - they have had only one case in their career. I was made to feel I was overreacting and unnecessarily worried.  

Hospital called to have surgery done under general surgery. That following week it is done. Even after surgery, I was told it was just a fibroid. After 2 weeks, I'd not heard of histology - do I follow up with GP and PathWest pathology to get copies sent? The following day, the Surgeon rang to tell me I had cancer over the phone. 

No further follow up since, no clinic appointment, which was cancelled - even after having major surgery and referred to Cancer Unit at King Edward Women's Hospital; yet to have an appointment with the oncologist. Oncologist nurse has been very helpful in navigating. I’ve also just had other issues with fluid collection in my abdomen and acute pain, from acute diverticulitis - had to be in EDS again (another story!).

In my opinion, the whole experience has been a debacle, I felt demoralised, I didn’t feel heard, and made to feel like a hysterical, emotional female looking for attention, and treated with condescension and felt dehumanised I believe because of it been classified under Women’s Health. I believe even the State Sarcoma Service has no funding for Sarcoma under Women’s Health!  

Yet to have a plan put in place for managing this cancer but if I had not advocated and pushed this through and had this taken out in the timeframes they had scheduled - I believe it would have been detrimental.  

I named my diagnosis before they confirmed with the pathology. Leiomyosarcoma is a big word and I understand it.