Update on mum

Appointment as expected. Results stage 4 cancer that has spread to pleura. Only option is chemo and clinical trial. Not positive for EGFR or ALK. The only genetic testing they do in uk. Other countries way ahead and do more genetic tests but probably too costly here and no drugs licensed to treat other mutations. Appt with professor in Liverpool now next Friday to discuss options.

All we can do is hope and pray mum is strong enough for treatment and fights this. X

11 Replies

  • Wendy, I'm so sorry for your mum and for you to hear about her appointment. A week seems a long time to have to wait to hear about the options but perhaps she needs some time to come to terms with what she's heard, if that's possible.

    I wish I could say something more helpful. I hope you're able to have a quiet time together this weekend, and can bring some comfort to each other.

    Life is pants sometimes, isn't it? Love, Sue x

  • I'm so sorry to hear the sad news about your Mum, Wendy. I hope she will come through her treatment if she choses to have it. I know this is a very worrying time for you and Mum and will remember you in my prayers.

    Love to you both


  • Hi Wendy, Don't understand why they didn't see something on the xrays. I really wonder about the medical professionals sometimes. I had lung cancer, 3 yrs. ago in March. Very small tumor. Just had a wedge resection. I just had a ct scan and it's ok. I also make sure I get an xray at some point. Also get copies of a anything I get done. I wish you and your mom much luck. Rubyxx 😊

  • Wishing your dear mum the strength to get through this. Thinking of you too. xxxx

  • Hi Wendy I am very sorry for what you and your poor mum are going through, and I wish her and all the family the best.

    I have known a couple of people in real life whose chest x-rays didn't show cancer then a few months later did. Sometimes it is very quick growing and your mum has been very unlucky. This could be why it wasn't spotted sooner.

    One more thing which strikes me is that you said both your parents had/have lung problems. There can be a genetic link so keep an eye on your own health.

    Wishing you all the best. x

  • Thanks. Mum is feeling quite well in herself apart from the breathlessness.

    Cancer truly is an awful disease for anybody to have.

    It's upsetting too that the UK are way behind lots of countries in drugs that are available.

    Mum is doing all she can with diet to help get herself in good condition before any treatment. X

  • Hello Wendy, I think I said before that your mum & I are similar. But so far I have been lucky. So sorry it hasn't so far worked as you hoped. Last year I worked on a BLF lung cancer patients advisory group , with other patients & medics across Europe. At some point this year ELF/ERS will have a lung cancer website. I too was struck how far advanced other EU countries were in a personalised approach to cancer care. We are supposed to be heading in this direction but it appears not yet! Love & best wishes to you and your mum.xx

  • I would be unscrupulous and tell doctors ya puting asbestos calim in and ask what cell type cancer is

    If its MM cell type be asbestos caused it.


  • They've said its adenocarcinoma. Mum had it 3 years ago and they say it's recurred and spread to pleura. X

  • I know when you have cemo genetic test don't work .

    Like i say am unscrupulous and throw my toys out box guy so i would still blame asbestos.

    As i think opens up world treatment options

    My doctors never told me i had granuloma let alone honey combing.

    Now when i go doctors i ask for copy of radiologist reports

    My experience of gp doctors is the have the own agenda SO we have to fight to have ours meet.

  • Bless you, it's going to be hard for you too so remember to take care of yourself too and if it gets too much, come and have a chat with us xxx

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