trying to stay strong

hi everyone, my mother in law was recently diagnosed with lung cancer, she’s 87. Within a few weeks of the diagnosis she was struggling to breath so we had to call an ambulance, during her hospital stay they drained 1.5 ltr of fluid from around her lungs, after a week of being in hospital she was sent home. With another couple of weeks we had to call an ambulance again, this time they fitted a permanent drain and arranged for nurses to visit 3 times a week, they are draining around 600-700 mls each visit. After todays visit it didn’t seem to make any difference. We don’t have an oncology appointment until the 15th Jan. we have been told that they can’t cure it but could possibly give some kind of treatment. Not entirely sure where I’m going with this post apart from I don’t know what to do.

[Elt79]

So sorry your mother in law is having to deal with this - particularly during this really difficult time in the NHS. 15 January must seem like a lifetime away waiting for Oncology appointment. I too was told not curable but treatable albeit I did not have the complication with having to have my lung drained. I was fortunate enough to tolerate immunotherapy well and has so far worked for me. My prognosis was poor as it had already spread to my brain and adrenal glad. That was 5 years ago and despite finishing immunotherapy 3 years ago have stayed stable - apart from brain mets which continue to bother me. I can only wish you all the best and pray for positive treatment for your mum in law x

[Adaughter in reply to Elt79]

Hi Elt79,

Do you mind if I ask whether cyberknife has been discussed for your brain mets?

Thank you,

[Elt79 in reply to Adaughter]

I had Steriotatic radio surgery to my brain mets in November 2018 before starting immunotherapy, there was regrowth so had it successfully repeated in February 2021. Since September 2023 there has been a change in my MRI and was all set to repeat in October however subsequent MRIs are not conclusive and show some regression - to be honest last 3 moths have been really stressful as I seem to be in limbo and as one site affects my speech been on low dose dexamethasone which really affects my sleep etc. Twice jnr doctors strike has meant coming cancellation of MRI as hospital not allowed to book outpatient scans during so not getting any further forward should have had latest this week. Anyway all of that said if necessary I can have treatment repeated but over a longer period to reduce risk of necrosis.

[Adaughter in reply to Elt79]

Thank you for reply. I find this forum so helpful, I think it’s difficult to understand the stresses involved unless you’re going through it yourself, I have a little understanding as it’s dad that’s affected. I sincerely hope that your scans get back on track soon; without starting probably a heated debate, I think the strike action is so wrong. Sending all positive thoughts to you for continued regression.

[Hidden in reply to Elt79]

Thank you for taking the time to reply, its giving me some hope that we can keep her with us a little longer.

[Adaughter]

Hi,

My dad is 89 and diagnosed last May, was told only palliative care, no treatment. I looked at peer reviewed documents online and discovered that a liquid biopsy ( blood test) was an option, one we were NOT advised of within the NHS. Whilst arranging this privately and advising dads medical team accordingly, we were then offered this biopsy via an NHS trial! Luckily, the results showed that dad could benefit from targeted therapy and duly started taking Erlotinib ( with tolerable side effect of minimal rash, helped with antibiotics). Last scan in October showed significant reduction in 8cm tumour although enlarged lymph node. No lung drainage has been necessary. Due another scan next week and we hope and pray for more positive news but braced for anything…well my dad is so brave, I’m not so good. Every day is a blessing but I understand how you must be feeling, it’s hard isn’t it. All I can say on this journey is try and stay positive, keep asking questions, you will be your mum’s best advocate, sending my best wishes to you both.

[Hidden in reply to Adaughter]

Thank you for replying, I will certainly discuss this with my husband and the drs and see what they say. Not sure if anything will work as she has it in both lungs, but until we see the oncologist we are in limbo. My mother in law is just taking every in her stride, I think it’s the chin up and carry on situation, that they have always been told to do. The very best of luck to your dad, hope you get some good news.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Welcome to the forum and so sorry to hear about your Mother in laws lung cancer, this is understandably a stressful and distressing time for you all.

Hopefully the fluid will eventually get less each time and your mother in law will see an improvement in her breathing. You may wish to contact the oncologists secretary, via the hospital switchboard, to ask if your appointment could be any sooner, also your mother in law should be allocated a lung cancer nurse specialist, which she may meet at the appointment.

This link will take you to our booklet on 'Managing a lung cancer diagnosis' where it goes through the investigations, types of lung cancer and treatment options: roycastle.org/app/uploads/2...

There have been many advancements in the past decade with new treatments such as Immunotherapies and Targeted therapies, and this can sometimes provide both quality and extension of life.

A biopsy is the best diagnostic tool to determine both type of lung cancer and any specific biomarkers that may be present to be eligible for treatment options such as immunotherapies and targeted therapies.

We have a range of patient information booklets on living with lung cancer and the different treatments: roycastle.org/help-and-supp...

The waiting can be very difficult, not knowing what is happening next and we are here to support you in any way that we can. For some, it is helpful to know as much as possible about the cancer type and our information booklets can help provide this for you.

We have one to one support and online support groups through zoom for both patients and carers, you can view the sessions and register through this link: roycastle.org/help-and-supp...

If there is anything you would like to discuss you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

[JanetteR57]

It's natural to feel lost, confused and devastated at the news. Most of us are completely oblivious to the terminology used or advances in treatments in recent years and fear the worst when told incurable. the majority of UK patients are detected when surgery isn't an option but the explosion in treatments in recent years as well as changed combinations of treatments have improved the outcome for many.

My own diagnosis was 13 years ago on 13/1/11 after having a 7cm tumour removed with half my left lung. I was 52 at the time and like many, had assumed it was only smokers who developed it so having been misdiagnosed in the October as uncontrolled asthma, and as a never smoker, no real urgency put on getting a CT scan when the scanner broke down and parts had to be ordered, found the diagnosis a shock.

however I got on with life and started fundraising for Roy Castle lung cancer foundation when a dear friend wasn't so luck when his was diagnosed whilst I was recovering from my surgery. I've worked, swam, travelled and led an active life since.

For the last 10 years I've been involved in cancer research and the landscape bears no resemblance for any of the treatments for lung cancer - even the surgery I had is now mostly keyhole rather than open surgery and every other type of treatment has changed and many new ones like immunotherapy and targeted treatments available to some dependent on the characteristics of their tumour. During that time I've been privileged to have met many lung cancer patients - most of whom had written themselves off or felt written off at diagnosis. Many symptoms including fluid on the lungs, chest infections etc can also give harsh symptoms that affect the patient yet are treatable..... be there for her, try not to Google as so much information is outdated, irrelevant, from other countries or inaccurate and stick to trusted websites for information like Roy Castle lung cancer foundation, CRUK or Macmillan on all aspects of living with lung cancer. good luck.

roycastle.org/about-lung-ca...

[Hidden in reply to JanetteR57]

Thank you so much for your reply, im with her now and have made her get out of bed as I think laying in bed isn’t good for the mind. It’s hard to watch a lady that was so active and within weeks is struggling to move from one room to another.

[JanetteR57]

I know that feeling - I spent almost 3 weeks in hospital in October with a chest infection that had me barely able to walk a few steps to a bathroom and extremely breathless but despite 3 hospital appointments today, I was walking quicker than most down the hospital corridors and am up and about..... not all her symptoms will last - once there is treatment in place including draining the fluid and other treatments, hopefully she'll respond and be more like the lady you know. It can take time for our minds to adjust too.

You're right - my consultant told me that recovery was up to me and that sitting/lying around wasn't good for the lungs - and keeping active (doesn't mean running marathons by the way!) - getting up, moving about, including in the house can help. I've always found distraction works for me and stops me dwelling on thoughts by keeping busy.

thinking of you both and hope she perks up soon.