Devastated

[LemonDropsDreamToo]

we We’re given the devastating news that my mums lung cancer has spread to her brain, following MRI scan they confirmed there were spots in my mums lining of her brain.. they started her on steriods there and then and she will start chemo on Monday, I just can’t believe this is happening, I am struggling to come to terms with that this means for my mum and our family, I look at my mums face and I know I can’t lose her. We don’t know how long we have left with my mum and it’s the unknown which is causing such despair

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear LemonDropsDreamToo

So sorry to hear about your Mum and how difficult this must be for you all. It is very hard to come to terms with and how it can happen so quickly puts you all into that rollercoaster of emotions. I have placed a link below on our information on brain metastases, which you may find useful information and be of help to you all:

roycastle.org/system/file_u...

There are a few treatments/ medications to reduce symptoms they may be able to offer, radiotherapy or targeted therapies of which is explained in the book. Your Mum may wish to consider a clinical trial, which you could ask either the Oncologist or lung cancer nurse.

As you are supporting your Mum, make sure you surround yourself with emotional and practical support, this can bring the best out in people and many are more than happy to be of some help.

If you wish to discuss anything you can call us on our free nurse led helpline number on 0800 358 7200

Kindest regards

The Roy Castle Support Team

Ask the Nurse

[Denzie]

When you say lining of the brain did they tell you it was leptomeningal metastases? Do contact or call the number at the Roy Castle hotline. You’ll get good, accurate information.

[LemonDropsDreamToo in reply to Denzie]

Yes Dennis that’s it xx

[Vapcq]

I was diagnosed with 5 spots in the brain last year. I had cyberknife radiotherapy treatment and touch wood, only 2 remain and are shrinking. I know the cancers are all different and this treatment might not be for your Mum, but I wanted you to know there is far more hope than you might imagine. Good luck x

[juliepoolie01]

Hey, my mum has been living with lepto for2 years now and still going strong, don’t give up!!! Mum changed her life style dramatically, maybe this has helped? I dont know! I do know how terrifying the prognosis was and it seemed there was no hope but people do manage to keep going for a long time despite the stats. Pls read my original posts, mYbe you’ll get inspiration from them! Any advice or info I’m happy to give xxx

[juliepoolie01 in reply to juliepoolie01]

Hey, so glad I have helped! Yes, stage 4 lung cancer that had spread to lining of brain. Of course you can message privately, I’m happy to help in any way I can. When you search on lepto there seems to be no hope but there are many people who do ok, I have no idea what your Mums journey will be or what her journey has been but certainly do t give up hope. If you go to my profile and read my posts you’ll get an idea of what we have done then message me privately and we can chat more xxx

[LemonDropsDreamToo]

Julie thank you so much for replying to me and sending me your message, can I ask if you mum also has lung cancer? and what lifestyle changes did she make? I can’t begin to tell you how your message has given me hope and completely changed my mind set, mum has her first chemo tomorrow ... I have so many questions for you, would it be ok to message your privately xxx

[juliepoolie01 in reply to LemonDropsDreamToo]

Hey, so glad I have helped! Yes, stage 4 lung cancer that had spread to lining of brain. Of course you can message privately, I’m happy to help in any way I can. When you search on lepto there seems to be no hope but there are many people who do ok, I have no idea what your Mums journey will be or what her journey has been but certainly do t give up hope. If you go to my profile and read my posts you’ll get an idea of what we have done then message me privately and we can chat more xxx

[JanetteR57]

Sorry to read about your mum - but as you can see on the responses, there is much to hope for. The internet is full of outdated statistics and also fails to comment much on survivors. They are around. More treatments are being trialled all the time. Although I did not have brain mets, when I looked at the internet when told I had to lose half my lung in Dec 2010, diagnosed as lung cancer in 2011, the information suggested I would not return to work and this was a one way street. In all statistics, there are survivors - there is not 100% mortality rate - so stay positive, look after your mum, make some good memories and be there for her in whatever time is ahead - be it months or years. don't waste precious time worrying about the unknown - try and live for the here and now. thinking of you. x