Advice please?

Hi, 

I'm just looking for some advice if possible. 
My Mum was diagnosed with stage 4 small cell Primary Lung Cancer metastatis - Liver & Bones in September 2020.

(We are heartbroken) as expected. More so, as my sister is 12 years old and we are all worried how she will cope and adjust to Mum not being around in the future. 

The prognosis was up to 12 months (with palliative treatment).


She's now had 4 rounds of chemotherapy, and is currently having 10 days of radiotherapy. The scans show that the cancer has shrunk a lot and the consultant said they were very happy with her progress. They were quite surprised at how well she responded. 
 

The consultant has since advised that there is no more treatment available for her after the radiotherapy has finished on the 2nd February. I'm confused as the treatment is working! :( 

(It's been so hard as we've been unable to chat with her consultant and health team to discuss in detail where things are at in detail due to Covid-19). I'm sure Mum is not remembering everything they are saying and the NHS are not letting us come in with her to appointments. I've requested calls from the consultant, still to no avail.  

Mum has been taking THC & CBD oil since the diagnosis which I believe has helped. (Although not scientifically proven). 

I wanted to understand if the decision for 'no further treatment' can be challenged? And if anyone is dealing with a similar situation? 
I know that sounds terrible and I don't mean to cause any offence to the professionals but she has reacted well and is not ready to just give up! 
I suspect it's because chemotherapy is so expensive and as she is stage 4 they won't keep her on it even though it's working! 
 

I'm also keen to see if anyone has experience with private treatments, chemo etc when the NHS decide enough is enough .

 

Apologies for all the questions and rambling on. I feel helpless, lost and a little frustrated. 

Any advice would be much appreciated. 
 

Dale x

  • Hello Dale

    I'm sorry to hear about your Mum's diagnosis. It's good to know that she responded to well to the treatment she has had to date but it's understandable that you're feeling confused about why this will now be stopping. 

    I'm going to suggest you give our team of nurses a call. I'm sure they may be able to talk things through with you and answer some of your questions. They're available Monday to Friday 9am to 5pm on 0808 800 4040. 

    It may be that you've not had a response from the hospital due to the issue of patient confidentiality. Unless your Mum specifically gives permission for the Consultant to talk to you about her health then you may struggle to speak with someone. If this is something that your Mum is willing to do then I'd suggest getting in touch with the hospital PALS department in the first instance for some advice and guidance about how you can arrange this. 

    I do hope that you're able to get some clarity on your Mum's situation and that she continues to remain stable. 

    Best wishes, 
    Jenn
    Cancer Chat moderator