Absolutely devastated

So sorry to hear of your husband's diagnosis.  Since my diagnosis and regular follow up CT scans, I have always thought that, along with chest CT's, brain CT's should be carried out also.  I had a brain scan very early in my diagnosis in 2023, which was clear thankfully, but none since my initial diagnosis.

The lesions in your husband's brain may have been caught earlier had regular brain CT's been the norm for all lung cancer patients, the brain usually being the first place it metastasizes to.  I suppose it down to funds, who knows!

I wish your husband all the very best for the future, and hope he recovers well enough for his treatment.

Footnote:  While I was having radiotherapy treatment I saw a few patients who looked very ill indeed and wheelchair bound, but they were having their radiotherapy treatment.  I have read that radiotherapy works very well on brain metastases.  

Ann 

Hi Ann. Hes been having regular scans, the last was 5 weeks ago & brain was clear. So to go fom that to this, I cant get my head around it, feel sick & dazed. Even his lung/bone had shown incredible shrinkage & this is why RT was going to be started on lung.

He as shown no signs of brain tumours no headaches, no nausea nothing all normal. And then Thursday he just became confused.

Theres no change this morn & as a one to one nurse, as he keeps trying to get out of bed. I dont see how radiotherapy could be done, as you need to lie still & hes twiddling things etc hes been on strongest dexamethasone since yesterday morn at about 5/6am & confusion still the same.

Its breaking my heart seeing him like this....

Thanks for reply

So sorry, you will both be in my thoughts.   

Hello Tillyboo,

I am so very sorry to hear of this and wish your husband all the very best for a favourable reaction to the dexamethasone.

My thoughts are with you.

Derek.

Hi Ann , I have never had a brain scan , not at first diagnosis 2019 nor at recurrant diagnosis 2023 , could it be they caught my cancer early and no lymph nodes were affected ? I didn't even see an oncologist until I had recurrance now i only see respiratory doctor and s scan yearly .

Take care Sandra 

Hi Sandra

My lung cancer was caught early and a PET scan showed no spread and no lymph node involvement, but I also had a brain scan a week or two later. Same as a friend of mine. I was told it's their protocol to include a brain scan. 

My hospital is in North Wales and has a designated cancer centre catering all of North Wales hospitals....maybe that's the difference.

Best wishes

Ann

I have stage 4 NSCLC which had already spread lymph node, the other lung, adrenal gland, liver and all bones in the spine and all of the ribs. Dont know about other bones as the scans are of the lungs and stomach area only. I have CT scans every 3 months and an MRI once a year. Thank goodness so far I've had no spread to there so far. I was told that the MRI once a year of the head was standard practice. 

My husbands had scans every 3 months since this hell started, all good. His last one 5 weeks ago was brain clear all shrinkage of tumours, lung went from 71mm to 29mm & were going to do radiotherapy. And 5 wks later his brains full of lesions ones bleeding. Not responding to dexamethasone. Been in a deep sleep all day & oncologist as said to prepare for the worst. A week ago we just got to Fuerteventura & now hes lying in a hospital bed, confused wen awake, deep sleep & basically I've been told to just prepare. I cant get my head round the spead of this wicked poxy disease, gives u hope & then destroys lives. I'm beyond devastated 30 yrs I've been with my husband I'm heartbroken...

 Tillyboo 

I am so sorry to hear this news, this is devastating for you. I cannot believe the terrible luck your husband has had, just when you were celebrating the good scans too! I’m so sorry. 

So sorry to hear this tragic news about your husband! Of course you will be devastated. I can't imagine how you will be feeling right now, probably alone, lost and unable to get out of this oblivion, not knowing where to turn. No kind words will bring you relief from your pain. It seems so unusual and unfair for his brain scan to be clear just 5 weeks ago and now to be how it is. Cancer unfortuneately sometimes will take a change in it's course and we are never able to understand why. It is such a devastating diagnosis that sometimes returns it's ugly head when you least expect it to. It's been so so very cruel to your husband. It's difficult enough to live with the knowledge of being given the horror of a cancer diagnosis. Living in constant fear of if or when it will take a turn onto a non returnable path. I hope he is not experiencing any pain and I hope there is a comfort in that for you. I hope you have good family and good friends surrounding you and are by your side to help guide and support you through this time. Thinking of you both.