What to expect stage 4 with brain met... - The Roy Castle Lu...

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What to expect stage 4 with brain metastatis

Keijo
Keijo

Hi. I’m am reaching out because urgently need to know what to expect. My mother was diagnosed with stage 4 lung cancer with metastasis in the lymph node and brain just weeks ago, she is in her 60’s. She still has not seen a specialist as biopsy’s and tests have taken so long. She has been sent home with steroids and they have really improved her symptoms and appitite. I work out of country and I’m terrified that if I leave she will decline before I can get back. She has numbness down one side, bladder issues and speech slurring and pain at the site of the tumor. I don’t know if this is normal through or advanced signs. I tried to call the cancer nurse and she would not tell me a thing until she sees a specialist ( so you can see my dilemma) I am frustrated, terrified and confused as to what to do and what to expect. Please please, any info to help me prepare would to appreciated.

4 Replies
oldestnewest

Hi Keijo

I was diagnosed aged 46 with stage 4 lung cancer with metastasis in the lymph node and brain in April 2017. I had neurosurgery to remove the tumour and have been receiving immunotherapy Pembrolizumab since June 2017. I know the wait is so very hard but until they come up with a treatment plan there’s very little you can do. Please try not to google anything as at best the information is outdated and will probably only confuse and worry you more. I found Macmillan a reliable source for some info. Wishing you and your mum all the very best and am happy to answer any questions if I can.

I know from my own experience that you have to wait for biopsy results and it a difficult time. The results of the biopsy usually help to identify the best way forward treatment wise. It might be good to write your questions down and go with your mum to her appointment, if she is happy with that. Then you can get the best advice as to the way forward from the experts. There are different types of lung cancer. The Roy Castle booklets might be useful to read just to familiarise yourself with lung cancer in general but I would advice you to speak to her doctor and nurse when the results come through. If you are not happy then you can get a second opinion on your mums care. Hope this is useful. Wishing your mum the best treatment xx

Hidden
Hidden

Hi I too have stage 4 lung cancer and brain Mets treated but also have more new ones ,I too am awaiting a new treatment plan on steroids to reduce swelling around these new sites .All I can say is steroids do have side effects weight gain increased appetite but also with the reduction of brain swelling they reduce symptoms ie left leg weakness for me and brain fog .so I feel safer for the moment .It is a waiting game but hopefully on my next scan with reduction of swelling images will be clearer and a wise treatment plan will be given to me. Having lung cancer and brain mets is scary for me and those who love me, I am truly terrified of losing cognitive function and been unable to communicate my needs but I have hope and faith that my oncology team are getting it right .So hold in there things may improve and time to get things right is what is needed ,the steroids will be beavering away doing good stuff and even small improvements for your Mum will make her feel better in the long run .My thoughts are with you both ,I know these are difficult days for you both .Diane

RoyCastleHelpline
RoyCastleHelplineAdministrator

Hello keijo,

I am very sorry to hear of your mum's diagnosis, this will be a difficult time for you especially if you are working away from home. we have booklet on brain metastases which has excellent up to date information to expect, I have added a link below. If you would like to speak with someone please give us a call on the nurse led helpline freephone 0800 358 7200

roycastle.org/system/file_u...

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