Confused is an understatement!!

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Firstly I apologise in advance for the long post but hoping someone can shed some light! I’ll try and be brief and to the point

mum has NSCLC ( diagnosed November)

new right sided weakness 

CT scan recently showed 1 brain lesion

Mum went back to clinic today with my sister for all results PET,MRI . Respiratory doctor told them only 1 brain lesion and mum is still curable with radiotherapy.  He doesn’t want to operate on her lung as the tumour is quite large and he will have to take half her lung away and doesn’t think she’s fit enough. Sent her to see another doctor not sure what her official title is, I just know she’s a consultant that specialises in radiotherapy for lung cancer. She has told mum she’s stage 4 terminal . She’s prescribed mum dexamethasone 16mg a day and will see her again Monday. She’s said if mums right sided weakness doesn’t improve by Monday she can only give her lose dose radiotherapy and mum only has weeks left!!

how can 2 different doctors tell you 2 completely different things!!! So what do we believe? I know which I’d like to 

  • Hi 

    I'm very sorry to read that your mum has recently been diagnosed with lung cancer which has spread to her brain and I know what a difficult time this must be for the whole family.

    I can understand why you're confused and hopefully your mum's consultant radiographer will be able to explain what's happening when she sees your mum on Monday.

    Your mum should have been allocated a CNS (cancer nurse specialist) who is normally the person at the hospital who your mum can phone to ask questions. If she hasn't been allocated one then she should ask for the contact details when she sees the consultant.

    I can see that you also posted this in the lung cancer group and, if you haven't seen the replies, clicking here will take you straight to them.

    Do come back and let us know how your mum gets on.

    x

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  • Hello toot22 so saddened to hear your mum’s diagnosis and conflicting information must be so so frustrating.I don’t have cancer my loved one dose as your mum but it’s SCLC which is rarest but most aggressive it’s mestasised to different parts of body and brain we’ve been giving such conflicting information apparently can’t have radiotherapy untill cheomathreapy   Has completed but now brilliant consultant who’s thorougher and honest which is what’s needed I do hope things for your mum goes well watching a loved one go through this is so so painful please try at least sometimes to set little time aside just for you look after yourself your mum needs you  

  • Hi Toot22,

    I'm very surprised at what your mum has been told with only a single brain lesion, especially with the confusion. I have had 2 ops on my brain for a single tumour which returned. I also had stereotactic radiosurgery (SRS) at the royal Marsden. At the same time I also have had initially bowel then liver and lung, I was diagnosed at stage 4. I still have liver and lung.

    I would definitely challenge what you have been told and push it.

    Best wishes

    Martin

    Hope is my superpower