Feeling lost and overwhelmed….

[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 lost

Any stories at all would help please get in touch I’ve never felt so alone

Thank you in advance

[Palpman]

My wife was diagnosed with lung cancer and spread to 3 lymph nodes.They strangely also diagnosed her with cancerous PE without even doing a biopsy. Due to this she was put on palliative care.

A month later the scan showed the PE had disappeared without any treatment. She only had 6 radiotherapy sessions to the lung tumour.

We were expecting them to put a drain in to let the fluid out and perhaps pump talc into the pleura to prevent fluid buildup.

This disappearance of the fluid is still confusing us. Her cancer is now dormant. Touch wood.

[Sharkey1234567 in reply to Palpman]

Thank you very helpful.Just read your update please get the hospital

To do any necessary checks all my

Best wishes to you and your wife x

[Ellejayb]

So so sorry to hear this. But there is hope, lots of it. I am the same age as your mum and was diagnosed with stage 4 inoperable, incurable lung cancer in January 2018. I live a full and active life and nobody even realises I’ve had a cancer diagnosis (and I certainly don’t tell them!)

There are amazing treatments out there and lots of uplifting stories on this forum. I hope your mum will go on to be one of those uplifting stories.

And you are being a brilliant daughter researching this. My son was 18 and my daughter 20 when I was diagnosed. I know how hard it was for them back then and how hard it will be for you now. But things will get better for you all once you have a treatment plan in place.

[Sharkey1234567 in reply to Ellejayb]

Thank you for your lovely message and inspiration and understanding can I ask did you have chemo? Many thanks again your message made me feel strong

[Ellejayb in reply to Sharkey1234567]

I had a combination of chemo and immunotherapy to start with and am now on six weekly immunotherapy sessions. My primary tumour has shrunk from 8.5 cm to 3.8 cm (and we’re not even sure it’s a tumour any more, possibly just scar tissue), there is no cancer in my lymph nodes and the hole in my spine has fused. (At this point I touch wood, as I’m a bit superstitious!)

This combo of chemo and immunotherapy was my personal ‘magic potion’. There are all sorts of different treatments though and oncologists seem to very much match them to the individual.

Good luck to you and your mum.

[Sharkey1234567 in reply to Ellejayb]

Thank you again! We’re you feeling I’ll when diagnosed and how did you/do you find the treatment side effects wise? Did you not have surgery?

Sorry for all the questions? X

[Ellejayb in reply to Sharkey1234567]

Totally relate to all the questions and hope my kids would do the same.

I didn’t feel particularly ill at the time of diagnosis. I was doing my son’s 18th birthday party - humping chairs and tables here there and everywhere - and thought I’d pulled a muscle.

I wasn’t eligible for surgery - too far gone.

Yes, there are side effects, I can’t lie. Personally, I welcome side effects as a sign that the medication is doing its bit!

[Sharkey1234567 in reply to Ellejayb]

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…

[Sharkey1234567 in reply to Ellejayb]

Thank you so much for replying again it is most useful x

[sassassas]

Hi there, Yes it is very possible to live well following a diagnosis, even cancer that isn’t curable. There are lots of new drugs for different types of lung cancer that are very effective.

My husband is stage 4 nsclc and is living a very fit and healthy life. It didn’t seem possible when he was diagnosed 18 months ago.

Best wishes to you and your mum,

Sarah x

[Sharkey1234567 in reply to sassassas]

Many thanks Sarah it means a lot you taking the time to message. Can I ask was your husband I’ll with it when diagnosed? Did/does he have treatment?

[sassassas in reply to Sharkey1234567]

Hi again,It was the most unbelievable shock when the diagnosis came through because he’d only been having hip pain. This had been going on a couple of months and was severe enough to prevent him sleeping and needing strong pain killers. We (and the physio) thought it was just a sporting injury but then he had an mri to check prior to a steroid injection and that showed this huge tumour in his femur. Ironically this hip pain resolved itself before any treatment started.

It was around 2 months from that initial scan to starting treatment. In that time, he did get various cancer symptoms: a cough, fatigue, not being able to get warm, and physically he deteriorated quite a bit. He would have been able to run a half marathon before (albeit slowly!) but found it exhausting to walk 10 minutes.

Yes, he has treatment. 4 cycles of chemo and immunotherapy initially and now just immunotherapy every 3 weeks. He has a less common regime: carboplatin and paclitaxol were the chemos, tecentriq (immunotherapy) and avastin (a drug to prevent the cancer making new blood vessels).

The chemo is tough but we could see results within the 1st 2 cycles (the cough in particular became less severe) and he has no side effects from the current treatment.

I hope this gives you some reassurance that good results are very possible and your mum responds well. As Lionelboy says, supporting your mum to eat well, do as much exercise as she is able, sleep well and look after her mental health is really helpful. Xx

[Sharkey1234567 in reply to sassassas]

Many thanks your info and insight Is much appreciated x

[Sharkey1234567 in reply to sassassas]

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…

[sassassas in reply to Sharkey1234567]

HI Sharkey1234567 Thank you for letting me know. Yes, I know how totally helpless you will be feeling. It is hard to bear.

The month to start treatment from now does sound a very long time. It may be worth calling the cancer nurse to find out why so long? In my husband's case, we had a plan ready whilst we waited for the marker results. As soon as these were back we were ready to go. The assumption was that the markers would be negative (and they were), but if they had come back positive, they were ready to start him on a different treatment. I think it was 10 days between the similar oncologist meeting to starting treatment.

It is really important though to wait. If your mum does have one of these markers, there are specific drugs that work really well and really quickly and she won't have chemo. But if she doesn't, these drugs just won't work and she will be offered chemo and / or immunotherapy. Please do hold on to the fact that the outcomes for many late-stage lung cancers are very good these days because of all the new drugs.

Thinking of you xx

[Lionelboy]

Hi ,so sorry to read your sad news. I have never posted on here before but read your post and wanted to reach out to you.Sadly my mum, passed away 12 weeks ago after being diagnosed with stage 4 inoperable lung cancer,also with pleural Effusion,. We waited and waited for results and appointments, a telephone appointment with Christie’s left us with a bit of hope regarding treatment. One week later we attended Christie’s to be told she wasn’t fit enough for any form of treatment.

I was devastated to say the least and my mums face said it all. ,Our nightmare had only started 12 weeks earlier and now they were sending her home without any form of treatment . Admittedly her breathing was getting worse by the day due to the PE , but for 12 weeks we were led to believe they were going to offer her some form of treatment . So your mums health and fitness plays a major role in any treatment offered, Is she eating healthily, can she walk without getting out of breath , these are all the factors they look at. My heart goes out to you and all your family , I hope you get all the answers and outcome you want, be positive and cuddle your mum daily, cherish every second xxx

[Sharkey1234567 in reply to Lionelboy]

Thank you for reaching out I am so sorry for your loss. I cannot imagine what you have had to go through. Thank you

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello Sharkey123456,

This diagnosis of lung cancer will be a huge shock to both you and your mum, it is this great fear of the unknown. This is always a very difficult time waiting for appointments and the uncertainty of not being not knowing what kind of treatment will be offered, understandably you will both be feeling very anxious about the future. As you can see from the previous answers there is indeed a hope and positive stories of people who are living with lung cancer.

Below I have added a link to our managing your lung cancer diagnosis which you might find useful

roycastle.org/app/uploads/2...

If you would like to discuss anything at please get in touch email 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

[Sharkey1234567 in reply to RoyCastleHelpline]

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…

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to Sharkey1234567]

Hi Sharkey1234567

The results of the genetic markers can take that bit longer, and understandably this can feel like such a long time before any treatment starts, but it has the possibility it may offer the treatment that will provide the best outcome for your mum.

You could contact the lung cancer nurse specialist about the months wait, as your mum will have to have blood tests prior to starting chemotherapy.

It may be that they are hopeful your Mum has some markers and this may provide other treatment options for her like Immunotherapies or Targeted therapies.

Many loved ones feel at a loss with not being able to do anything whilst awaiting results.

You may find it useful to start setting up some support for yourself, during the wait and for when treatment starts. Some people like face to face support, online group support or one to one telephone support. This link will take you to some of our support links: roycastle.org/help-and-supp...

Cancer Care Map provides information on what support is available in your local area: cancercaremap.org/

This is the link to our booklets on treatments, chemotherapy, Immunotherapies and Targeted Therapies: roycastle.org/help-and-supp...

Please do not hesitate to contact us if you would like to discuss further, by email to 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

[Sharkey1234567]

Thank you your replies really help x

[Sharkey1234567]

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…