Iam new to the group, just going through staging tests, but at present it’s stage 3B lung cancer across both left lobes, too advanced for surgery. My GP thought it was long COVID, ha they got that wrong! I’ve felt like I was drowning as not able to even the basic of things without becoming breathless and coughing. I’ve been a nurse for over 40 years and thought I was being neurotic, but ha start of a long Journey. Finding it hard to share with others including family and friends as always been the one that has supported others when needed.
Hope2782 x
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Hope2782
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Welcome to the forum where you will find plenty of support and encouragement, and sorry it is under the circumstances and journey of your diagnosis of lung cancer.
It can be an extremely frightening and an isolating time, especially when you have always been the one to care for others; people may assume that you will cope with this well, and you will in time, but at present, in this situation you are not the nurse but someone who is feeling perhaps very vulnerable and if you can , do share with others and ask for support.
Treatments are more advanced now for lung cancer than they have been in the past ten years, with new treatments of Targeted Therapies and Immunotherapies. You can find information on these in the links below.
We have many booklets on the different treatments and living with lung cancer which you can find here:roycastle.org/help-and-supp...
You should be allocated a lung cancer nurse specialist and if not this can be requested either through the oncologist or the GP.
We have an online support group through zoom and if you are interested in this you can register through this link:roycastle.org/help-and-supp...
There are many encouraging accounts from those that have gone through similar and these can be found on this link: roycastle.org/campaigns/lik...
Please do not hesitate to contact us if you would like to discuss anything, you can email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday and Friday 0900-1600
Thanks for you reply, all of the information on the website is excellent, I feel better informed already hope
Hi Hope
My names Pam and I was diagnosed last September with Stage 4 NSCLC. It was a massive shock, no symptoms other than right shoulder pain, which I went to GP with and the cancer was picked up.
Started very quickly on treatment at Christie's Manchester. First immunotherapy that unfortunately didn't work and now chemo.
It's spread to my lymph nodes, small area of brain which has been successfully treated with radiotherapy. It's inoperable.
It's good you found this site, I do understand that it's very difficult to talk with family but as long as they are there to support you then that's okay
Ask as many questions on here as you want, and you'll have lots I'm sure.
Any more questions please message me, you can private message if you prefer.
Hi LoimieThanks for your reply and offer of support. I had pain in my shoulder and it was put down to COVID. I do worry about how many other people are out there undiagnosed. I am under Papworth so like you couldn’t wish for a better centre. I have a Bronchoscopy and EBUS tomorrow, hopefully they will agree on a treatment soon. Feel very much in limbo, and family asking all the time why things are taking sooo long. Baby steps and one step at a time. I’ll let you know how it goes.
Thanks Loimie, the Bronchoscopy and EBUS wasn’t as bad as thought it would be, but wouldn’t opt to have it again, had PET scan hopefully the MDT will update me on the final diagnosis and treatment plan, next week, the waiting is very stressful isn’t it.Best Wishes
Glad procedures went well and not as bad as you thought it may be. Just make you gag a bit! PET scan will be ok and help with final diagnosis. It's all stress isn't it! I'm just getting sorted to go Christie's for 2nd chemo! Be shattered later! Keep in touch and let me know how things go.
I’m still finding my way round this site and found Pam’s reply to you. I had my PET scan on Tuesday and needle biopsy next Tuesday and final diagnosis meeting two weeks today.
I’m glad the procedure is over so onwards and upwards. Yes, the waiting is certainly very stressful. I’ve found a sleep meditation on UTube by Lina Grace. It’s an 8 hour track and it’s really helping me to get a full night’s sleep. I’ve not been into meditation before so I’m really surprised at the results. Obviously it’s not for everyone but I wake in the morning feeling calm and relaxed which is very surprising.
I hope your next steps come when they have been arranged.
Good morning hope sorry to hear you are having such a bad time I hope you can get some hope and positivity from this site there are so many success stories . I am on this site because I’m trying to help my mum secondary lung cancer for past 7 years living a good life until unfortunate pneumonia battle this winter . Hopefully she will be able to recieve one of the many new treatments soon . Are you under the right hospital , I’m a nurse too very best wishes to u xx
Hi Thanks for your reply. Hope your mum is feeling better than she was. Typical Nurse lol. Yes Iam fortunate as I live in Suffolk so under Papworth. The worst thing for me is I was a theatre nurse prior to going into Governance and then IPC. I am terrified of having the Brochoscopy and EBUS which is tomorrow. Hate being on the other side have no control.Have a good day
Hi Hope, please don’t worry about the bronchoscopy it is over before you know it! I am 40 and was told I have stage 4 lung cancer last year! There are so many more treatments available now and I am sure your oncologist will give you the best treatment possible!!
There are many people living well with cancer! I am taking targeted therapy for mine and have just been told that the tablets are working and the cancer is about gone!! I find walking helps me and my mental health and just trying to be normal. I still work full time and still go out with my friends!
I understand what you are going through right now but please believe me it does get easier! Don’t get me wrong I still think about my cancer everyday but now I think about how I am going to beat this horrible disease! It is not taking me down…. Cancer will not win!!
As others have said, this can be the worst time - when the investigations take time and results are still being sought to find out the optimum treatment as there are many more now than when I was diagnosed in January 2011. It's always hard for healthcare professionals and caregivers to accept they might need help themselves - I was involved in a PCT and community healthcare services then CCG until last April and the tendency can be shrug off symptoms in our quest to serve others. However now it's been detected and you will hopefully be on a treatment pathway soon, it's time for you - even if hard, do reach out - others have trod this pathway already and always willing to help with questions and moral support. Roy Castle lung cancer foundation has some great information and learning materials and also suggested questions to ask of the clinical team - good luck.
The majority of us were misdiagnosed they treated me for GERD for 18mths. I kept going back eventually was given a scan, and the the shock of the diagnosis no-one is ever prepared for. It's onwards and upwards from here on in. Once they know the type treatment will be pretty quick. Be your own best advocate and research. The Roy Castle foundation are a wonderful organisation you will gain a massive amount of knowledge and support. There are also groups on Facebook that offer heeps of advice and support. It's hard reach out for help when you've been the one everyone turns to, please be kind to yourself and reach out even if it's just to vent.🤍🤍🤍
Hello Hope. Welcome to the club no one wants to belong to. I'm sorry you are going through this and, yes, it is the most scary and frustrating time imaginable. You have been diagnosed at a time when there are many new treatments available, so stay hopeful. There is a lot to.learn along the way. I, too was a nurse and the one who took care of others, but with the support and love of family and friends I eventually learned to accept and appreciate their help. Also I was never so scared in my life as when I was diagnosed with lung cancer. It was a couple of months after having a lumpectomy for breast cancer and was being prepared for follow-up radiation. Thankfully, they did a cat scan as part of the simulation and discovered the lung tumor. No symptoms, never a smoker. Even my oncologist was shocked. That was seven years ago and although there were some bumpy roads along the way I'm still here and doing quite well. Your journey will be different from mine. Be patient with yourself, take care of yourself, try to stay as active as you comfortably can and try to keep your mind occupied; it really helps to make the journey easier.
I pray your treatment goes well and you will be the one to encourage someone else in their lung cancer journey.
Hi hope in same club nearly a year on chemo and immunotherapy this forum fantastic you will get lots of support keep us all posted on your journey lots of love ❤️❤️
Hi there Hopethat's a lovely picture of you - thanks for sharing. Where were you?
My husband is a year on from his diagnosis of advanced NSCLC. Never smoker, super fit, 53 etc etc so I totally understand the enormous shock.
He's responding incredibly well to his treatment (chemo initially + immunotherapy) and he is now as fit and healthy as he ever was (he's a huge cyclist). Honestly, when he was 1st diagnosed, we couldn't see further than a few months ahead for him.
There are many good reasons to have a lot of hope. Lots of really effective new drugs, you're under one of the best teams at Papworth and your own nursing background.
I’ve just been diagnosed and it’s it’s all very new and difficult right now. I love this forum already as there is so much support, very apparent by the replies to your original post.
It’s lovely to be in contact with others who know rather than burdening the family. I’m going to do my own post shortly
Hi All Thankyou for all of your replies. I certainly feel in a better place than a few days ago. You have helped me to understand that it’s about living with cancer, rather than having a terminal diagnosis. Have a good weekend. Oh my Bronchoscopy and EBUS was cancelled last minute, hopefully it will go to plan next Tuesday. BW
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