What would you do?

hi Kaz 121

i can’t really answer your question I can only share with you my experiences which was in more normal times. 

I had an abdominal liposarcoma. On my very first scan which was done locally abnormalities were detected in my liver however that consultant said ‘ I’ve looked at it long and hard and don’t believe it’s relevant’ I clung to that sentence for the next 6 weeks because the oncologist in charge of the sarcoma team at the royal marsden was adamant that it was far too large to be a haemangioma. It’s 4.5cm and there are other smaller ones so I think it looked like a cluster of secondaries. I had to have 2 liver biopsies which are a real nuisance because you have to lie still and flat for several hours afterwards. 

I only learnt that these were haemangiomas 24 hrs before my major surgery. 

In summary i think someone will contact you to recommend a biopsy because it’s they only way to be certain of what is happening in your liver. So even if you phone your not going to get told much. I guess that it will take time to organise your biopsy given the present situation. I really feel for you because waiting patiently when your future is on the line is so difficult. 

Fingers crossed that you to have several abnormally large haemangiomas in your liver!

i hope this in some small way this reassures you.

janetyjane

Thank you Janetyjane. I seem to go fro being told everything is fine to there's something there constantly. I'm a details person who likes hard facts. I'm so frustrated I can't see a consultant at the moment, don't even have a name. 

Hope you are well and safe right now. 

Xx 

Hi Kaz121 and welcome to the community.

My wife too has Leiomyosarcoma, hers is incurable because it started out with a fibroid but got seeded around her body when her womb ruptured (long story!).

She had two round of chemotherapy and fortunately her cancer had been rendered stable, our new gold standard. She has checkups now every 9 months and just keeps surprising the oncologists with how well she is doing. 

When it comes to cancer, just like real life, there is little in the way of hard facts and of course at the moment we play a game of trading one risk with another - like to shield or to go for a walk or shopping. 

As well as our information here there is also a lot of really good information over on the sarcoma uk website that might be helpful.

<<hugs>>

Steve