Myxofibrosarcoma diagnosis - GPs slow to recognise?

Hi MichaelI 

Sorry to hear about what you went through. My wife's cancer is quite different in that it started in her womb (probably). The doctors spent quite a lot of effort looking everywhere for cancer and dismissed her gynecological symptoms - that turned out to be a form of sepsis.

When they finally found the cancer it had spread to her lungs and was incurable - but the good news is after two lots of chemotherapy they managed to render it stable and now 10 years later we find ourselves living with cancer rather than anything else.

Of course sarcoma is a rare form of cancer and many doctors will never see a single case in their entire career but it is easy to feel let down in these cases.

<<hugs>>

Steve

My fibromixoyd sarcoma was originally diagnosed as a fatty tissue lump. I underwent ultra sounds, and even an MRI on it, and then had it removed after an NHS referral to a private hospital.

This took ages though as we were in COVID and lockdowns and hospital shutdowns kicked in. I had to travel 40 miles for my MRI, and had several pointless appointments. It took me ages with emails chasing up the secretary of the surgeon,

Luckily for me, my mum works in oncology at the hospital and knew the doctor and he was a breast cancer surgeon. He removed the “lump” and naturally gave good margins but then decided on his own back to send for analysis. It came back as malignant tumor.

Referral from this point got even slower. A multidisciplinary team had to review the case at Manchester Hospital, before eventually I got referred to the Christie.

This is where it all changed. The Christie is like the premier league of hospitals. Every patient is treated equally. Honestly, this is VIP level for me.

I had further surgery and reconstructive work done by a plastic surgeon, with very intrusive surgery. The surgeon was bold, honest, and straight. Knocked me for 6 but also made me feel in capable hands. And I was.

Ive since had nothing but clear scans on chest X-rays and no further growths. I have a lump on my head but my final surgeon offered to bet his house that that was just a fatty lump.

The doctors can be slow, they’re not specialist, and they’re under pressure. My GP hadn’t heard of the sarcoma type, and there’s little evidence out there about them either. But the progress being made is phenomenal.

My experience with going back and forth to the GPs about swelling is very similar. I was pregnant at the time and was told this was pregnancy swelling in my thigh. I was not sure. I kept going back and even went to A&E. Ultrasound said it was a cyst and everyone just kept saying it was a cyst and related swelling. 18 month later and here I am diagnosed with Myxoid Liposarcoma. What more can we do as patients then go to our GPs. I'm in the process of feeling let down. But all the specialists just keep saying it's rare its never picked up, which I think is an excuse. As an adult I know my body and knew this was not right and no one wanted yo pursue. Hope all goes well with you.