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‘I had a gut feeling that something was wrong, so I insisted on a face-to-face appointment’.

Kelly is 34 and lives in Hampshire with her husband and two children, aged five and two. She works in health and social care, and says the support she has received from Sarcoma UK has been invaluable.

Beginning in 2020, for around eight months, I started experiencing symptoms of sarcoma. These included a change in bowel habits, a distended abdomen, feeling full quickly after small meals, random temperatures, tiredness, weight loss, and pains in my back.

I went back and forth with my GP several times, who suggested that it was my stomach settling down after a bug. These were all telephone consultations, as I was experiencing these symptoms during the COVID-19 pandemic.

I was concerned, and had a gut feeling that something was wrong, so I insisted on a face-to-face appointment and was finally examined by a GP. As soon as I was examined, the GP said that she was very concerned and could feel a large mass in my pelvis/abdomen area. I was referred for a two week wait for suspected cancer.

I received a consultant appointment with a gynaecologist within a week at my local hospital, and I had a CT scan and numerous urgent blood tests. 

I met with an oncology consultant for my results, who suspected that I had ovarian cancer, and informed me that the tumour was already large. At this point, my surgery was booked to have a total abdominal hysterectomy, bilateral salpingoophorectomy, bowel resection, appendicectomy and omentum removal (in other words the removal of my ovaries, uterus, appendix omentum and part of the bowel).

After surgery, I was told that the tumour was in fact a retroperitoneal tumour. Three different pathologists were unsure whether the tumour was a benign tumour or a leiomyosarcoma. They all offered differing opinions. 

Another specialist opinion was sort, and eventually I was diagnosed with a low grade retroperitoneal leiomyosarcoma and referred to a specialist sarcoma unit. The final diagnosis happened months after my surgery.

I have not had to have any follow up treatment, but I am currently being monitored with follow up tests to check for reoccurrences.  

All the staff at both hospitals have been amazing. My wonderful and supportive family and friends have helped me get through this difficult time, as well as looking after my young children, which as offered me something to focus on. 

The support I have received from Sarcoma UK has been invaluable. It’s hard to get accurate support and information, and it can be very overwhelming and confusing at times having a rarer cancer diagnosis. 

My advice for anyone affected by sarcoma is to trust your instincts and be assertive in getting your health needs met. Always make sure to reach out for support. 

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