Mum just diagnosed with stage 4 advanced squamous cell lung cancer Nsclc

Hi Bella

I've had rheumatoid arthritis for over 30 years. Treated with Methotrexate among other things, for 30 years too. Since I was diagnosed in January with Stage 4  lung cancer I’ve done a lot of research and it is a possibility that my long term RA did cause my lung cancer. I asked rheumatologist why they don’t screen for it if they’re aware of it and he  didn’t seem to have an answer except ‘where and at what stage of RA would they start screening’?.

As for methotrexate I asked if it could have caused my cancer along with the RA and also if it was safe for me to stay on it and he said he and the oncologist had conferred about it and it wouldn’t have contributed to the type of cancer I have and they’d decided had it been a melanoma or squamous cell carcinoma they would have said stop taking it but for adenocarcinoma it’s fine to stay on it. From what I’ve read he seems to be correct. I was however on Hydroxichloriquine  (sp) also known as Plaquinil  (sp). They took me off that as they said it would be better for my heart.

I hope this is helpful to you.

Take care

Sending Positive vibes and hugs  

Jools

Thanks so much Jools, that makes me feel more relaxed as my type of cancer was adenocarcinoma so good to know methotrexate is okay to carry on with. Sending you good wishes and hugs xx

Mum has 1 cycle of chemo and doing well but a scan letter came to have a ct after 2 cycles. I think this has scared her. My worry is that there’s no baseline as such, because her last ct scan was just over a month before chemotherapy started. They won’t then be comparing it with the start of chemo and I’m worried the cancer could have spread a lot in that time before chemo even started so how can they see if it is working if it got worse in the lag time?

Mum is terrified that there’s doctors could stop it at any time and she feels not in control and scared all the time. All she has is the hope of chemo.

I saw our gp for myself (sick note and depression and mental health since this diagnosis) and he asked how mum was, and then proceeded to tell me they don’t see patients with stage 4 advanced lung cancer squamous cell survive more than a year so we are talking months. I didn’t ask that so was shocked. the oncologists and cancer nurses have never given a time (is that weird not to be given a time/prognosis?) yet they’re saying this is palliative chemo for disease control. no one has directly told my mum a prognosis but letters say poor prognosis (only received that this week since diagnosis on 6th and 14th March). How can I Carry the weight of what the gp told me like a secret my poor mum hasn’t been told? I don’t know if she should know.  I feel like I can’t tell my mum and burst her bubble of hope. She thinks she is going to have years and years.

 I asked the nurse when calling up about different things and she said this is palliative chemo so it is not to cure, it is to make more comfortable, pain etc, disease control not curative. 1 in 3 might shrink or stun the cancer and buy more time. I asked and she said well we’re giving 6 cycles (and some people can’t tolerate that much or don’t make it through and stop it or they can get a bad infection that’s fatal), but that’s 18 weeks worth and we wouldn’t offer that if we didn’t think it would do something. I asked more and she said we don’t know it would be weeks or months and it might be a year but it wouldn’t be two. I haven’t told my mum that. I don’t think my mum does understand as she’s never been told. Maybe it’s being hopeful, denial, anger or maybe she doesn’t realise? She doesn’t google like I do. She keeps saying I’m not going anywhere and I’m not dying. 

can anyone resonate? 

Hello Amber

I'm sorry to hear about your mum's diagnosis. I personally would not dwell on how long your mum has and, in your mum's defence, I think it is better she doesn't know.

I am saying this because a close friend of mine was diagnosed in early August 2023 with stage 4 advanced small cell lung cancer (SCLC), the most aggressive type of lung cancer. It was discovered after a bout of breathlessness and a trip to A&E. A chest X-ray revealed a left sided pleural effusion and partial lung collapse with a large tumour.  A lung biopsy was done on the same day and a referral was made for emergency chemotherapy. She was told it was inoperable and incurable, the chemotherapy was palliative only to relieve her symptoms. Also she did not wish to know her prognosis, neither did her family, but they really thought that she would not make it for Christmas 2023.

Now, 20 month's later after chemotherapy and subsequent immunotherapy, she is living her life as normal. Don't give up hope, cancer treatments these days are so advanced and help people live long after initial prognosis. 

As I said, please don't dwell on the negative things, and most of all stay away from Google, just let your mum live in blissful ignorance, she is thinking positively by having hope, which can only be a good thing.

Best wishes to you and your mum.

Ann 

Hi Amber

I’m so sorry this is all happening. It’s so hard not knowing what is the right thing to say or do.

I don’t understand why they didn’t scan her nearer her treatment start date, it doesn’t make sense. All you can do is help her to stay positive as best you can.

In relation to the prognosis discussions my oncologist’s told me they would never give a prognoses unless I specifically asked for one. I had already told them I didn’t want one as I thought it would limit my ability to fight this thing. 

It’s hard to know what is the right thing to do for your mum. I’m not sure your GP did the right thing telling you this either unless you specifically asked for the information. Now you can’t ‘unknown’ it.

I do have experience of this though, I think I mentioned before that 9 years ago my Mum was diagnosed with stage 4 Oesophageal cancer. Squamous cell carcinoma. It came as a total shock as she’d had little or no symptoms.

She was offered palliative chemotherapy and radiotherapy to manage her illness.

From the start she said ’if I’m dying I never want to know’. I think for the same reasons I don’t want to know now, inability to fight the disease if you think your efforts are worthless.

I did ask her oncologist how long, he told me from 6-18 months.
From the day she was diagnosed till the day we lost her we never told her. She fought as hard as she could, she had chemo which made her symptoms worse and radiotherapy which helped a little, she passed 9 months after she was diagnosed of an infection not her cancer. She passed very peacefully 

I spent that 9 months being my normal cheerful self in front of her, lying to her and crying all the way home every day.

I can’t tell you what the right thing to do is but I can say weigh up the difference it’ll make to your mums fight if you do. Whatever you decide it needs to be the right decision for her. If you have to carry the weight of this secret you’ll find a way to cope, I know I did.

I hope this helps you Amber. 
Stay strong 

Sending positive vibes and huge hugs  

Jools x

 Amber  I am really sorry the GP found it appropriate to make this comment to you. Maybe he thought he was doing the right thing in trying to prepare you, but information like this should only be offered if you ask. 

I just want to add to what both Sanguinesse  and Joolsg  have already said. I personally wouldn’t tell your mum. If she wanted to know she would ask, and in my experience once people know, they can give up. This is going to be a heavy burden for you to carry, and personally I would be putting in a complaint with the practice manager for the GP putting you in this situation. You deserve an apology, and it may make him think twice before making off the cuff comments in the future. 

Does anyone know why my mum is struggling so much with stairs after 1 cycle of gemcarbo chemo? She was doing great in the first 2 weeks (had chemo in day 1 and 8) and is now in the break before starting cycle 2 (day 22). She seems to have put on weight, facial swelling (steroids or chemo?) but is now struggling with stairs so much especially at night. I thought she might feel a bit better in the break before cycle 2 but she seems worse. I’m not sure if this is jornal chemo fatigue or something wrong with her legs? She says she feels like there’s an extra tyre around her and just feels so heavy. She has only out in about 4 pounds but looks heavier and it’s hard to get up from seated and walking is also much slower. Is this normal after 1 cycle of chemo? I was wondering if she’s not drinking enough or eating too much from steroids. It’s hard to know what is a normal side effect and what is a worrying one to report? She is terrified if she says anything they may stop her chemo. 

Thank you so much x