New diagnosis - Sqamous lung cancer Stage 4, incurable but hopefully maintainable

Hi puti welcome to the group but sorry you find yourself here. You have been through such a lot already and it seems so unfair that you are facing this again. Having a cancer diagnoses is terrifying even if it isn’t your first time, it doesn’t make it any easier. 

I hope your appointment goes well for you next Tuesday, and you get your treatment plan. Surgery is often ruled out, we have seen many people here in the group where this wasn’t an option, but there are many treatments for lung cancer available now. Please let us know how you get on. 

Dear Chelle,

Thank you for your kind message. Am not finding this an easy diagnosis to process but hope I will be more optimistic when I get an actual treatment plan next week. They are moving very fastĺ it is the 'terminal' label which is freaking me out.

All best wishes.

puti

Hi, new to this forum but not the breast cancer forum. I have a similar story but not where you are right now. I had BC again last year after 31 years, same breast, no lymph node involvement, mastectomy Letrozole all done an dusted. Recently due to a stomach issue, had an ultra sound which showed shadows on the liver, so had a ct scan which showed liver fine but a nodule on my lung and enlarged axillary lymph nodes. The breast dept said the lymph nodes are actually smaller than last year so nothing to do with them. However I found out that the node was there last year, 1cm in size, never mentioned! Now it is 2cm. Had a pet scan, no sign of cancer anywhere except the now diagnosed Tumour on the lung, which is on the edge of the lung. Now here comes another problem, I have emphysema so waiting to hear is my breathing tests are good enough so I can be operated on, if not? Also the lung dept have not ruled out secondary BC, they said we won't know if primary lung or Bc unless they get the tumour in the lab. So I don't know if I am terminal or not. I am so sorry you find yourself in this terrifying position, all we can do is fight with the cards we have been dealt with! Here for you if you need a shoulder. Massive ((((HUGS))) xxxx

sorry to hear your news I’m sure you will find a lot of support on this site . Keep n touch thinking of you x Chris 

Dear Casmo

Thank you for your email. I am so sorry to hear your news. You sound so together . Waiting is awful. I too have what is termed mild emphysema and according to the lung function test nurse apparently did absolutely fine . Hopefully you will be fine and fit enough to be operated on. Fingers and toes crossed for you . Thank you for your supportive answer. Xxxx 

Hi there, how did you get on yesterday? My dad has squamous nsclc stage 4 so in a similar position to you. 

Hi Suey16

Sorry havent replied sooner - everything seems to be moving so fast - my meeting with Oncologist went well - I liked her - she took her time to find out more about me and my current quality of life and 2 treatments were suggested - 2 chemo plus 1 immunotherapy (Paclitaxel & Carboplatin plus Pembrolizumab) or the gentler 2 drug treatment (Gemcitabine and Carboplatin).  I was given a further appointment for next Tuesday when I am expected to decide which treatment I will go with. She mentioned that she wanted me to have an MRI brain scan to be certain nothing was lurking (CT was fine) and that she wanted to have an up-to-date chest and pelvis scan as a base line. Wednesday I was inundated with appointments - pre portocath insertion and bloods today, Thursday, Portocath insertion tomorrow, Brain MRI Sunday, appointment Tuesday, cT scan Wednesday and Chemo next Friday. Inbetween trying to get my flu jab an topper removed before Sunday!

Am spending most of my time crying and wanting to just hibernate but the wheels just keep on grinding and I continue to try and make some sense of what is happening. My CLL team are fantastic and reassuring even although I will not be actively involved with them now until after I will have finished Chemo - it still does worry me that I am stopping Calquence and hope that I will continue to remain stable - at least I know that I can contact them at any time still if I feel the need to.

. I havent yet made up my mind and continue to waiver between the 2 choices. The thought of 6 hour sessions is daunting and I doubt that either choice will be totally smooth sailing.

Sorry for being so long winded - I really am reeling with the speed of how things are proceeding although I know I should be grateful! 

Now to your father - firstly, can I ask where he is being treated - West London by any chance? what options is he being offered and does he have any other issues which need to be taken into consideration? I don't know whether my rambling above is of any help whatsoever . I wish him all the very best and you because I know how soul destroying it can be for family to rally - I feel so guilty at times that I have become the child and my daughters the adults. What I do fully recommend is taking full advantage of the help and advice offered by MacMillan and depending on where you are a Maggie's or Mulberry Centre - I would have been and be totally lost without their support both emotionally and practically . Please stay in touch . xxx 

So 'lovely' to see your reply. Don't worry about the timing, we're all busy with appointments or treatment mostly on here.

We just came off the rollercoaster you are on a few weeks ago. My father completed his 12 sessions of palliative radiotherapy. He's 83yrs old so we're being  less 'aggressive ' on how we treat him. Thankfully he tested positive for a protein called pdl-1  from the lung biopsy which means he's a good candidate for immunotherapy. But that will only start once he's recovered from radiotherapy. We're based very far from you though, in the northwest of England! 

I saw your post about your options. I hope you get some good responses on here. That's a difficult decision to make. My Dad will have the pembro that you mentioned, and apparently it's bit of  a wonder drug. It's the best selling drug of 2023/24! But we've been told Dad has 50% chance of it working. 

Keep is informed of what you decide next week. Hope you manage to get dome good rest amid all the appointments x