Stage 4 Sarcoma - Anyone offer any advice?

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Hello all

I’d like to start by saying thank you to everyone who posts in this community. Just reading through experiences has been hugely comforting for me.

My mum has been diagnosed with Stage 4 Sarcoma with the primary site being in her upper thigh. This presented initially as a solid mass and was misdiagnosed as a haemetoma. My mum was told no imaging was indicated and sent home, with the doctor advising her to return after three months if it hadn’t healed. This is despite her having had Sarcoma previously, back in 2015. 

Needless to say it didn’t heal and had further investigations in June. By the time a CT scan had been arranged the tumour had spread to her lung. There were three distinct masses on the scan. One of a few centimetres on the lower left lung and two at around half a centimetre at the top of the lung.

For various COVID related reasons things have been slow to progress and she hasn’t seen The Christie yet to discuss treatment but is there a week today for a consultation. Over recent weeks she has been becoming increasingly breathless.

On Friday her GP listened to her chest and there was no air going into the left lung at all. A visit to the hospital and a chest x-ray later, a diagnosis of fluid on her lung was made. The treatment plan being to drain the fluid, hopefully bringing about an immediate benefit. 

The attempt to drain the fluid wasn’t successful and a CT scan was arranged in an attempt to identify the best location to insert a drain due to thickening of the tissue in the usual area for drain insertion.

This afternoon, the Hospital called to say that the cause of the breathlessness isn’t fluid, but appears to be the tumour having simply grown so large that the lung can’t take in any air.

I’m struggling to comprehend what’s going on. The primary tumour in her leg has reached a size of 13cm, over a period of about 7 months.

A biopsy of the lung tumour has confirmed it is the same cancer and yet that would (if the hospital have got this right) that the small masses in her lungs have grown dramatically in the last 8 weeks to have gone from half a centimetre to being so large that her lung cannot function as a lung any longer.

I wonder if anybody here can help me understand any of what is going on? I’m totally overwhelmed by what I’m hearing and my brain simply cannot comprehend how this is happening

Thanks in advance 

  • Hi

    Sorry to read your story and how quickly it seems the cancer has taken over one of your mum's lungs. It does sound like her cancer has advanced very quickly and I can see how frightening that can be. 

    Sarcoma is one of the rarer cancers and so many doctors will never have seen a case. I must admit to being slightly shocked to read about the misdiagnosis given her previous history.

    However all that is in the past and for you now it is really helpful that you reached out for support. I wish I could do more for you except acknowledge your pain. If you think it might help you to talk remember we can always ring the helpline - I have certainly cried at them in the past and have found them very patient and helpful.

    <<hugs>>

    Steve

    Community Champion Badge

  • Hi Dan, I'm also under the Christie sarcoma team. I don't know if I can say my consultants name on here. I was introduced to his specialist sarcoma nurse Anne who gave me her contact details and told me that I could ring her any time if I had any questions. Maybe you could try ringing your mum's specialist nurse and ask her to clarify things for you. Take care, deb