Does anyone know about the way suspected sarcoma should be managed?

[TheOriginalEmu]

I have a large ‘lipoma’ in my thigh. I had an MRI in August of 2021 and someone rang me a couple of weeks later and said that it wasn’t anything to worry about. My mum had died the week before the mri and I wasn’t the most with it so I don’t remember who this woman who rang was or where she was ringing from. So I just assumed it was all ok.

I requested my MRI scans I’ve had for another reason related to back pain, and the report for this MRI said that this lump was suspicious and soft tissue sarcoma couldn’t be ruled out. That it would need to be referred to the sarcoma MDT. It also said the size of it (15cm by 6 cm) was atypical and the scan wasn’t the best quality and had limitations.

Everything I’ve read says that a lipoma that big should be considered sarcoma until definitive proof it wasn’t and that it should be biopsied. I never had a biopsy. Should this have been done?

the woman who rang me may well have been from this sarcoma MDT, but I don’t know for sure. I’m just questioning how they can be sure it’s not a sarcoma without a biopsy, particularly if the MRI wasn’t of good quality.

Any information would be great. I don’t know if I should be checking up on this?

Bluntly, if it was a sarcoma you probably wouldn't be here by now if that was August 21.

Otherwise you can ask your GP to contact the sarcoma team and ask for feedback for you (unless they received a letter at the time from the MDT explaining their plan in which case alot easier).

Thank you. I will do that today.
but it’s not necessarily true that I wouldn’t be alive, I had a friend who had a sarcoma and it wasn’t diagnosed until it had been there for probably 8-10 years. I mean I really hope you’re right and I could be worrying about nothing, so I just want to know if it’s usual or possible to diagnose from just an MRI.

In my experience getting a diagnosis of sarcoma is extremely difficult, because sarcoma is very rare, less than 1% of all cancers, and there are many many subtypes (as many as 150). That means that statistically your lipoma is very likely just that, and not sarcoma. I would, however, go back and ask for further investigations, probably your GP first. At my local(ish) hospital there was a 'sarcoma patient pathway coordinator' who as far as I could tell did no coordinating whatsoever, and the pathway to diagnosis was absolutely shite. Anyway that's beside the point, I did have a biopsy after my MRI, and eventually got referred to the Marsden, who are brilliant, btw, and my surgeon said he could tell from the MRI it was sarcoma, and the biopsy is really to identify the type, stage and grade, and in fact they couldn't identify the grade until after I'd had surgery.

So yes I'd push for further investigations, some sarcomas are very much worse than others, and it's perfectly possible you could still be here nearly two years later. But if it is sarcoma, you want to get it treated. Good luck.

Thank you. I spoke to my GP who got in touch with the MDT who seemed to have no record of ever hearing of me 😑, he was concerned enough to send me for an immediate second MRI and an ultrasound Had those today and they are being reviewed by the MDT tomorrow. So we will see what that brings.

Ye that sounds about right. It reminded me that actually after i’d been referred to a second hospital for investigation of possible sarcoma (after the MRI) I was told that the MDT there decided that the MRI actually looked fine and they weren’t going to biopsy it. It was a massive round of chinese whispers (can we still say that? sounds a bit racist now) and extremely stressful. The route to diagnosis was way worse than the diagnosis itself. Once I actually got to the Marsden and started getting treatment it all felt way more manageable. I hope you get answers soon.

Well it’s looking like it probably is a sarcoma. They want me in Monday for a biopsy to determine the type. They think based on the growth (ie it’s not grown loads) it’s a ‘mixoid’ type I think she said.
The nurse who phoned was very nice and said she will provide evidence that this has been mishandled. I just can’t believe that had I not requested an MRI for an entirely unrelated thing I’d be none the wiser.

Mine is myxoid too (myxoinflammatory fibroblastic sarcoma to be precise). Make sure you get referred to a specialist team, if you live in the south that’s probably the marsden. I know the christie is very good but i’m not familiar with any other specialist hospitals in the north. Feel free to DM if you want to chat.

Thank you! I might well do that. I’m in south wales so I don’t know if that makes a difference but I’ll ask. I’m making a list of questions to ask when I see the consultant next week.

the thing is also if it is sarcoma that they need to be very careful when taking a biopsy. everyone kept telling me my lump was nothing to worry about but it clearly wasn’t as there were two consultants and a registrar in the room when they did the biopsy. don’t feel shy about making a fuss over this.

I’m definitely going to make a fuss! This is unbelievable the more I think about it.

Any update? Hope everything's ok

Any update @TheOriginalEmu?

Hi folks. Sorry for the long MIA. I had surgery on June 25th to amputate my leg from the hip. I’ve been in treatment since and got the all clear this morning! I still have to have 3 monthly check ups but considering the absolute cluster fuck this whole thing was I’m feeling very lucky to still be here. Obviously the surgery was life changing and I have huge mobility issues. But I’m here.
thank you all for your help ❤️

So glad to hear you have got the all clear x

@TheOriginalEmu oh my gosh. I am in shock reading your post. Presumably the amputation was because it had been left for so long?! That's crazy. It sounds like you are lucky to alive. Sending best wishes

Jeezo! Glad you're here!

Thank goodness you checked up despite the tough time you've had since.

Well it’s possible I would have lost the leg anyway, but they could have done less drastic surgery earlier, yes.
It’s all been pretty mental tbh. I’m seeing a psychologist and there is going to be legal action at some point.

so I suppose the moral of the story is, if you think something isn’t right, keep checking!

Oh my god you poor thing that sounds incredibly traumatic. Thank goodness you did get it checked up. Really hope you're doing as well as possible under the circumstances.

Blimey! Thank god for your persistence
Wishing you well for your recovery.

Thank you! I’m doing ok all I’m all. ❤️