? Brain mets: My mum was treated with... - The Roy Castle Lu...

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? Brain mets

em16780 profile image

My mum was treated with chemo/radiation for stage 1b nsclc, adenocarcinoma. Treatment went well and ended in September. A ct scan in November showed the tumour to be shrinking. She had a follow up scan recently (3 months after last one). There is no spread, the main tumour has continued to shrink. There is a new 4mm nodule in the same lung which docs will check at next 3 month scan, they can't confirm cancerous. The lungs look emphysematous. My mum has tingling in her right hand and foot for two weeks, doctor concerned as only one sided so have booked a brain mri. Anyone have experience with brain mets? Felt positive about things but now worrying it's spread xx

11 Replies

Hi Em

Such good news that your mums tumor is showing shrinkage after treatment. She must be cautiously pleased. I think I'm right in thinking that stage 1b is quite an early stage cancer so it's good that it was found.

Brain mets sounds very scary but I think they are fairly common in lung cancer. (I glean that from reading various forums over the past 9 months or so) so it's good that she reported the tingling to her doctor. My 54 year old husband had tingling which progressed to lack of strength in his right arm very rapidly. In his case he was investigated for spinal compression (which his doctors thought was a side effect of his chemo) An MRI showed that he didn't have a compression but did have several small brain mets. He got a referral for gamma knife treatment (in his case at the Royal Hallamshire ) The doctors there reassured us they could treat it and any further brain mets that might appear in the coming years. That was very reassuring . Unfortunately his cancer was very agressive but even though brain mets sounded very scary he had hope that they could and would be dealt with.

I wish you and your mum all the best on this unwanted journey.


Hello Em Hope I can offer you some reassurance re possible brain mets - I had treatment at Royal Hallamshire and last brain scan result was good. I too was reassured that any further mets could be treated. No side effects from treatment, the only reminder of my overnight stay there was a not very flattering photo they took of me wearing the mask! Fingers crossed & love to your mumX

Hi Em, My wife is stage IV adenocarcinoma diagnosed in early January. No other symptoms except right side tingling led to the cancer discovery. We are told brain mets are indeed very indicative of this type of cancer; she has three and was treated with 5 X whole brain radiotherapy fractions last week. Too soon to determine results. You don't mention, however, whether your mum has been tested for any genetic mutations in her cancer. Have checks taken place for EGFR or ALK mutations? If they are present a range of new drug treatments open up such as I.e. Crizotinib, which is generally very tolerated and effective against met spread as well as the primary tumour. If the tests haven't been done, you should ask for them. It's a small percentage of patients who have the mutation (but more common in female non-smokers) but a positive result can be a game changer. Best of luck with your mums treatment.

Thank you so much for all the reassuring responses. I very much appreciate your time in replying. Haven't had the date for mri yet but praying its soon as the worrying about it feels worse than knowing.... Did anyone have any further symptoms? My mum was tested for the efgr mutation at the beginning of treatment, they did say that would be a second line treatment if the chemo/radiation didn't work xx

MRI is booked for 21st march 😞 x

Ribeye79 profile image
Ribeye79 in reply to em16780

Ask to be kept informed of any cancelled bookings for an earlier slot. Do this more than once!

Do you think my mums recent thorax and abdo ct with contrast would have shown anything on her spine if it was there. It's just she mentioned losing some bladder control yesterday and now I'm worried about that too x

Ribeye79 profile image
Ribeye79 in reply to em16780

In my personal opinion, I doubt a thorax & abdo CT would achieve a spinal prognosis. You need to get the body MRI done. Mention the new symptom to the doctor/oncologist.

Hi all, after pestering the hospital and getting in touch with pals my mums MRI scan is now tomorrow. She has developed a daily headache on and off and some occasional nausea so I am very concerned. She has had no more tingling sensations to date. I hope we get the results soon. She has been in antidepressants for two weeks but stopped them 5 days ago as she thinks that they may be causing the headaches but they are persisting x

Hi. How did the MRI go?

em16780 profile image
em16780 in reply to Ribeye79

Hi rib eye, thank you so much for asking, it's been a very rough week and I haven't got my head around it yet. The nurse rang within half an hour of my mum returning from the mri and booked an appointment for 9am the following morning (Fri) told her not to drive so we knew it would be bad news. She has a 2cm tumour in her temporal lobe. Dr said very concerned as new area on ct in January alongside the met could mean her treatment had failed and so she could have weeks to months left with no tx. An urgent ct was booked for Mon to see if any further spread through her body. If any signs of further spread she could have palliative chemo to extend her life by a few months. We spent the weekend making plans and thinking how to tell my daughter. Went in wed for results. The Dr came in smiling!! She said that the area in my mums lung that had appeared and made her believe the cancer had spread had disappeared, the main tumour had shrunk again and the nodule in left lung that's always been there remains unchanged. She has now referred her to derriford to see if she would be eligible for stereotactic radiosurgery to brain met. Dr thinks possibly met there before treatment began but too small to see. I hope she can have it done, they said it depends if met is near any important structures. More waiting......


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