Adenocarcinoma locally advanced in lungs with Pleural effusion - help?!

[Sharkey1234567]

hi all,My mum has just been diagnosed with Adenocarcinoma locally advanced in lungs and lymph nodes near the lungs. She also has pleural effusion - which is positive for cancer cells. She has had to have a drain out in to drain the fluid every week. She is 63.They have said that it is non cureable and surgery is a no go.We are waiting for results of markers on the sample of fluid they took to see which exact chemo would be most effective and will speak to the oncologist in 12 days.Can anyone give me any hope that she can live at least semi comfortably for a period of time…has anyone had similar and been able to beat the estimation they were given and/or been able to experience an ok quality of life. I know everyone’s cancer and response is different and no guarantees but I just need to know there is one person out there that has had something similar and beaten the odds!?Feeling so helpless and lostAny stories at all would help please get in touch I’ve never felt so alone Thank you in advance

[gg1408]

Hi Sharkey,

I’m sorry to hear everything your poor mum is going through. It sounds like she’s got a lot of support from you!

My partner was diagnosed in December with stage 4 NSCLC and he also had pleural effusion. He had 1.5 litres drained off and the hospital did a biopsy on the fluid to try and identify any mutations that were causing his cancer at such a young age (for certain mutations, there are target therapies that can be very effective). Unfortunately the hospital couldn’t find any mutations at the time, and he was put on a mixture of Carboplatin, Permextred and Pembrolizumab.

When his lung nurse told us that his cancer wasn’t curable, she stressed that it is TREATABLE. Try not to consult Dr Google! I made this mistake when my partner was initially diagnosed and I had an absolute meltdown when I started reading. Many things on the internet are out of date and misleading. Roy Castle is an excellent place to find up to date info! Lung cancer treatments have come a long way recently, and new treatments are coming out all of the time.

When my partner was first diagnosed and began his treatment, he struggled for many weeks with the pleural effusion, breathlessness and coughing. He is now 6 months into his treatment and has a CT scan every three months to check on his progress. The two scans he has had have shown slight reductions in his cancer and his pleural effusion has thankfully disappeared. He is even back at work full time leading a normal life (apart from his trip to the hospital every three weeks for his chemo). Considering he couldn’t even leave the house due to pain and breathlessness at the beginning, he’s doing so well at the minute.

I’m sure everyone on this forum will give you some amazing advice. Things I have learnt so far are to cherish the lung nurses (my partner’s lung nurse can only be described as Wonder Woman. She is so so helpful in all areas and has made the process so much easier for him) and to write down lots of questions to ask at oncologist appointments.

Everyone’s journey is different, and I will keep my fingers crossed for your mum!

[Sharkey1234567 in reply to gg1408]

UPDATE:

We saw the oncologist on Tuesday. The markers results are not back yet so can’t say exact treatment yet but most likely will be chemo…all they said was she will be on it for the rest of her life and it will be approx 1 month until she starts the treatment…

I have to say I feel at a loss now…

Everytime we wait longer I feel it’s making the situation worse as surely not doing any treatment means the cancer has more time to either spread or make her worse.

I feel so helpless and deflated now I don’t know what to do…

[Pompeypete]

Hi,I was diagnosed with Malignant Pleural Effusion in July 2018. I had my lung drained a few times and a catheter fitted. I was lucky that they found the EGFR mutation. I have been on a TKI tablet since then. This dried up the effusion and I had the catheter removed.

[Sharkey1234567 in reply to Pompeypete]

Thank you for replying can I ask did you have a tumour in the lung too?

[Pompeypete in reply to Sharkey1234567]

I have no solid tumour but because it's in the pleural space it is considered stage 4.

[JanetteR57]

It can feel overwhelming and we can imagine the worse but the pleural effusion is usually treatable and there are different ways of managing that - see link... it's relatively common roycastle.org/about-lung-ca...

They are testing the fluid for specific markers to determine which treatment is most suitable is because there are so many treatments now dependent on characteristics of the tumour. The majority of UK patients are diagnosed at an advanced stage (stage iv) and many have treatments including radiotherapy (different types), chemotherapy (different types), targeted agents (different ones dependent on biomarkers), Immunotherapy in different doses and different orders so treatments are very personalised. It can seem like a lot of waiting at the start for all these tests but that's because rather than blitzing everyone with harsh treatments that may cause more damage elsewhere, the idea of targeted the specific type of cells causing the problem can be more effective and fewer side effects or long term effects.

When I was diagnosed with adenocarcinoma in January 2011, (age 52) there was only targeted agents for EGFR+ mutation on clinical trials and I didn't have it. I had half my left lung removed and a 7cm tumour removed.

Now there are more treatments approved every few months for different mutations and many live years with it being treatable even if 'terminal'. There are many other conditions including diabetes, HIV, Parkinsons etc where although there is no cure, we don't bandy the term 'terminal' around.... so this can sound much more scary than 'treatable not curable' which is often the aim.

The chemotherapy or targeted agent they'll use will treat the lung and lymph node spread - as surgery is usually only suitable if it's confined to the lungs.

The nurse who encouraged me to become involved in lung cancer research was 48 when diagnosed with stage iv Non small cell lung cancer and told she had less than 6 months to live but managed to take part in 2 different trials for EGFR targeted treatments and lived 4 years 4 months - long enough to see her daughter married and died in 2015. However since then more and more has been discovered and more treatments so don't give up. I've met and worked with many patients who've survived many years including those who didn't have the newer treatments....

As others have said, try not to 'google' so much information is outdated even if it's only a few years old such is the field of lung cancer treatment and discovery.

Roy Castle lung cancer foundation regularly updates its online information and offers support in many guises to those affected by lung cancer - not just the patient - so do reach out to them as a trusted organisation if you're keen to learn more and feel less alone. good luck to you and your mum.

[Sharkey1234567 in reply to JanetteR57]

UPDATE:

We saw the oncologist on Tuesday. The markers results are not back yet so can’t say exact treatment yet but most likely will be chemo…all they said was she will be on it for the rest of her life and it will be approx 1 month until she starts the treatment…

I have to say I feel at a loss now…

Everytime we wait longer I feel it’s making the situation worse as surely not doing any treatment means the cancer has more time to either spread or make her worse.

I feel so helpless and deflated now I don’t know what to do…

[JanetteR57 in reply to Sharkey1234567]

it's natural to feel so out of control and helpless but try to hang onto hope - although our brains say it must be wreaking havoc on the patient, actually often patients have to take a break from treatment or maybe wait before the start for some reason or another - I've met and worked with patients who survived years even at stage iv and way before some of the newer treatments.... there are many living for considerably longer than they imagined - as others have said, treatable not curable - and live their lives in between treatment.... hopefully once she has a treatment plan in place, things will begin to feel more settled..... you can always contact Roy Castle lung cancer helpline or Macmillan helpline for reassurance - they're not there just for patients but anyone affected by lung cancer.... in the meantime I've enclosed a link to the booklet on chemotherapy so hopefully give you some more information. take care... she'll need your support roycastle.org/app/uploads/2...

[mannyjoshi]

Hi sharkey I’m so sorry to hear about your mom. My mom had the same diagnosis I think, she is stage 3b nsclc. I remember at the beginning then using terminology such as treatable not curable, if she can handle the treatment. I remember thinking I just want to know if she will be okay. I just want hope and I think on reflection I know they were not trying to over promise. Here we are with my mom nearly two years later and we are taking each day at a time enjoying holidays and each other’s company. The chemo and radiotherapy is tough and was difficult, she got through it. The immunotherapy was so much ‘easier’ and allowed her to live a normal life. Stay strong your mom will be okay. Xx

[Kasuku]

Dear Sharjey1234567,I am sorry about your mum.I was diagnosed with Non Small Cell lung cancer, and on targeted therapy OSIMERTINIB (Tegrisso) tablet, two and half months on treatment. So far no side effects. Continuing with my walks and my daily activities as much as possible.

I was diagnosed with stage 4 NSCLC, metastasis to the diaphragm and pleural fluid and membranes both lungs. I was told no surgery as it is advanced. Aim to symptoms management, palliative, but on active management. I am reviewed every 4 weeks by the Oncologist. Had a CT scan chest and neck two weeks ago awaiting report.

Staying positive, continue with my treatment trusting in God, taking one day at a time.

I am 64 years old, living an active life, although not working at the moment.

I hope I have been helpful.

Kasuku.