Lung cancer : Hi all I have been told... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Lung cancer

Zac2018 profile image

Hi all I have been told today I have cancer of the lung, had a repeat ct thoracic, one month ago my nodule had grown. I have since had a chest pet scan followed by a broncoscopy & biopsy.

I have been passed over to the surgeons, but I have to have a brain scan to ensure it has not gone there.

I have spent the last 5 months in fear, I’ve had breast scan, spine scan bone scan +++

I’m now in absolute turmoil about the surgeons dismissing me if it has gone to my brain. Has anyone else been through this, I’m in torture.

Would be nice to hear from someone l have only just joined.

Tara x

28 Replies

Hi zac I don’t have much knowlage your cancer. But you won’t be dismissed many people on this forum will be able to advise you. I know your fear and anxiety it’s brutal talk to your gp get something calm you down good luck keep in touch x

Hello Tara, you are bound to be frightened, its the not knowing that's the worse. Yes,it's test after test isn't it. I've got drop foot again, thought due to my compressed vertebrae from my osteoporosis not the cancer but Dr Summer at Christie wanted to be 100% so did a brain scan and that's when they told me it's spread. Total shock, just about coming term's with lung cancer, even though I haven't got one single symptom of it, strange! But now brain, feeling in total shock! You will get through this Tara, you will be STRONG, and you are in the right place here, lovely caring genuine people. Let us know how you get on. Sending love and best wishes. Pam 💕 Just to add Tara the surgeon's won't dismis you, I said the same to my macmillan nurse and she was like WHAT! They would never do that!

sassassas profile image
sassassas in reply to Loimie

Great advice Pam xx

Loimie profile image
Loimie in reply to sassassas

Thanks Sarah, How are you doing? Good advice from you too, I really feel for Tara, she’s so scared, we all are aren’t we? Sending love and best wishes. Pam xxxx

sassassas profile image
sassassas in reply to Loimie

So true. All ok here, at the moment, thank you . But next scan is next week so we're in that very anxious stage 😬💕

Loimie profile image
Loimie in reply to sassassas

The anxiety is horrendous isn’t it Sarah. I’ll be the same next week when I get to discuss with consultant. I’m terrified she’ll say nothing can be done. Sleepless nights ahead for us! Sending love. Pam xxxx

Zac2018 profile image
Zac2018 in reply to Loimie

Thankyou Pam for your kind words of support, it truly turns your world upside down, the waiting for results ........?? All mentally draining.I am so so sorry about your latest news, you say you’re coming to terms with it, very hard for you.

It’s late and I can’t sleep this disease has consumed my life over what is lying ahead. Please keep in touch 💕💕x

Loimie profile image
Loimie in reply to Zac2018

Hello Tara, yes your right, it turns your world upside down. I’m the same, can’t sleep, cold all the time, with shock I suppose. Trying to eat but not really enjoying food. Can’t lose anymore weight! It doesn’t just affect just your body, it stop’s you from doing things you enjoy. I used to cycle all over the place and now it’s come to this. I don’t know what my future will be, I just take one day at a time, no more planning ahead. I used to think what I’d be doing in 5-10 years time, watching my little granddaughters grow up, they’re only 4 and 9. Do you have family Tara? Keep in touch, we’re all here if you need us. Sending love. Pam xxxx

Zac2018 profile image
Zac2018 in reply to Loimie

I live with my husband and our two Bengal cats, l have a very small extended family, all my relatives are up in Scotland.My husband is trying his best, but he is not as emotional as I am. It’s all hit me very hard.

I have a stepson who has a two year old little girl,.

I have close friends who are all nurses, it’s hard even for them to know what to say.

Lung cancer has a very poor prognosis, so sorry for my negativity, I m so scared.

I bet you absolutely love your two little grandchildren, there are some amazing success stories, fingers crossed for you, lm sending all my best wishes and hope your way xx

I’m going through the stage up down, today lm feeling so low.

Forgot to say my husband works night shift which I also resent very much atm.

I spend lots of time in my own xx

Loimie profile image
Loimie in reply to Zac2018

Hello Tara, I can tell your down, I have days like that, I was down this morning but not bad now. Aw! Nice having cats, I haven’t got pets, used to have rabbits when boys little. Bet it’s hard your family in Scotland. Your little 2 year old is funny I bet, they are at that age aren’t they. You mustn’t think lung cancer is a very poor prognosis, there’s so much treatment out there and drug trials you may be suitable for. I had my bloods taken for drug trials, you will too. We’re all scared on here aren’t we Tara, all here for each other. Sending you my love and keep in touch, whenever you’re feeling down, night or day. Love Pam. Xxxx

Zac2018 profile image
Zac2018 in reply to Loimie

Thankyou Pam it’s good to know your not alone on this freightful journey xx

Loimie profile image
Loimie in reply to Zac2018

You will never be alone Tara. 💕

Zac2018 profile image
Zac2018 in reply to Loimie

You are so strong Pam, what you have been through you are an inspiration. It’s bad news after bad news for you yet you still try to help others Thankyou xx

Red58 profile image
Red58 in reply to Zac2018

Hi zac so sorry your down it’s awfull feeling we are all here for you xxx

Hi ZaraWelcome to the forum - its a good place to share progress, experiences, hopes and fears, and also get some reassurance and hope. I know when my husband was first diagnosed, we were struggling to find any hope (he has stage 4 NSCLC that had spread extensively around his bones - at the time, his scan reports were the most awful things to read) but its amazing what a few months of treatment has achieved.

Brain scans are an absolutely normal part of the staging process - it doesn't mean your team think you have it. If it is in your brain, they will just need to treat that bit differently to the rest of you, so they have to do the scan.

Please let us know how you get on. I hope you are able to get some answers quickly - the waiting isn't easy we all know but you can have lots of hope.

Sarah x

Zac2018 profile image
Zac2018 in reply to sassassas

Thankyou Sarah l have been having scans/mri/pet/biopsy now my brain before I see the surgeon, I know it all takes time but the mental torture is draining.Anyhow it’s so good to chat with people have only been in the group for a day, please keep in touch, l will go back in history to read your story Tara xx

Hi Zac. Please don’t worry the head scan is just another of the standard tests after a lung cancer diagnosis. Be kind to yourself you’ll get lots of support here. The Roy Castle lung cancer nurse helpline is amazing. Sending a hug x

Hi Zac, they just need to rule out if it’s gone to the brain. It’s a common place for lung cancer to go. If it has they will treat it differently. Mine had gone to the brain and I had one round of cyberknife which is a type of radiotherapy and it’s all gone - I get monitored every 3 months and it’s still ok 18 months later. The fact they want to do that is good, they are going to be watching you like a hawk to make sure you get the most effective treatment. Wishing you well.

Hi zac you are in a much similar position I was in and after the brain scan which was negative I had my whole lung removed So keep positive and hopefully everything will work out fine.

Graham

Welcome to the group nobody would wish to have joined but are usually glad they did for support from those who've been through this before. Many of the tests for lung cancer now are a reflection of just how many treatments have been developed in the last few years and different treatments are offered dependent on the results of those tests. However in our 24/7 always on worlds, the waiting for results or yet more waits seems interminable. Yet they are a key part of diagnosis and ongoing care so finding a way to deal with your thoughts and anxiety is imperative whatever it turns out to be. This time of year always brings back memories of me turning up to A&E mid October and a lesion being found on my left lung - readmitted the next day misdiagnosed as uncontrolled asthma and kept in a week not responding to asthma meds but given meds to control symptoms so a CT scan could be done. It was delayed as the scanner broke and parts had to be ordered so it took many weeks before I was 'processed' - after several more weeks, a CT and PET scan I was called into see the consultant (in my case a thoracic surgeon) and told I had to have the 'large mass' removed together with half my left lung and it would be sent away for more tests to determine what it was and what any treatment might need to be. it took another month before I found it was non small cell lung cancer and a7cm adenocarcinoma had been removed. I was back at work and swimming 3 months later. That was in 2010/2011. I've since learnt how few people are clinically eligible for surgery so even more grateful but have also met patients who've survived years without surgery. Surgery these days is less invasive than the type I had and the majority in the UK is now keyhole but ablation (cyber knife - a type of radiotherapy) is also widely used for lung, spine and brain lesions and there are system therapies like chemotherapy, radiotherapy, immunotherapy and most people are offered combination treatments. I've been involved in cancer research since 2014 and the changes in every type of treatment for lung cancer have been incredible. don't give up, don't google but if you're curious use trusted information websites who update information regularly like Roy Castle lung cancer foundation and do seek help/support for your anxiety. Over the years I've had other causes for concern, investigations, waiting for annual scan results so if it is a cancer diagnosis, these tests/waits become a regular part of the pathway so finding a coping mechanism is essential for your sanity. good luck.

sassassas profile image
sassassas in reply to JanetteR57

JanetteYour experience and wisdom is so appreciated. What a journey you've had.

Sarah x

Hi Zac. My wife is a 5 year throat cancer survivor and it was confirmed yesterday that she now has lung cancer.The 2 of you seem to be at the same stage of diagnosis and pre treatment so I'll be following your progress.

Next week she gets a tumour biopsy with a needle through the chest wall. This is probably to find what type of cancer it is.

They will probably take another 2 weeks to decide on the treatment. Too slow for me but I suppose it's slow growing so no rush.

Wish you well.

Hi again. I have just read your profile and I wish that I had done that before I wrote to you! It's such a scary time for you just now but you will get the strength from somewhere and hopefully we can help to get you through. The people here are amazing and have helped me a lot so please keep posting when you feel scared or you want to cry or scream!! For me , this was the worst time when I was going through the scan's and biopsies but once you know what they are going to do you will cope a bit better because you have to! Don't panic because that's what we are all here for...to help you through and it is amazing what they can do now and people can be cured or we can live with the cancer being kept at bay. Please let us know how you get on and you can message me any time.All the very best,

Danni

Zac2018 profile image
Zac2018 in reply to Danni54

Thankyou Danni for replying, oh you have been through so much, and on top of everything else to loose your beautiful dog, heartbreaking.

It seems to be one thing after another, l do hope they try and sort out all of your other health problems, you really are not having a great quality of life, it must be so draining.

I’m so tortured with all this waiting, l fear they take so long it causes spread. I will keep in touch take care of your self love Zac xx

Danni54 profile image
Danni54 in reply to Zac2018

Hi again! The waiting is awful and Covid, of course, is making that worse. You WILL get through this and one day you will look back and realise what strength you have that you never knew that you had ! I'm here for you whenever you need to offload. Is your hospital close to where you live? I had to go to another hospital to get my Lobectomy and it was 4 and a half hour's away but my husband was able to stay in a hotel next door. I have a friend here who has had lung cancer for 6 year's and has been having Immunotherapy for a couple of month's which has shrunk the tumour a bit so there is always hope! Sometimes it's hard to accept that. The way I felt was that my world tilted and felt unreal somehow. You have all of us though to keep you on the straight and narrow! Take care and know that you, like all of us, have a core of steel!

Love and hugs,

Danni xx

Hi Tara, my wife was diagnosed with stage 4 lung cancer at the end of June three weeks after being told it was laryngitis so I understand the shock you are feeling. From our experience there is a certain amount of pain which tends to be transitory and dealt with by oxy norm etc... the bigger issue is the fear and anxiety, we have struggled with this ever since and it is only now starting to come under control through Diazapam for anxiety and Fluoxetine for depression, it is key to getting these sorted as it helps your sleep and particularly your appetite, Corrine has lost over 3 stone since diagnosis. Please dont dismiss the chemical help, no one likes drugs but sometimes they are the crutch you need for a short time. Keep strong, ig is a long road and if the drugs give you the positivity then use em! David Xxx

Hi Tara sorry to hear your diagnosis. Please be reassured you are not alone and never will be on here. This forum is a life saver and has so many lovely thoughtful real people on here in a similar situation that can help and support you.The fear is normal and we learn to sort of live with it the best we can. Your team and consultant will always be there for you, never be scared to ask any question no matter how small or large. Let us know how things go. We are all here for you

🤗🤗xx

Zac2018 profile image
Zac2018 in reply to Ollie13

Thankyou Ollie lm in the stage of terrified and scared, wish l could go to sleep and never wake up from this nightmare ❤️X

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