Hi I am new here. 49 and Just had the results of my ct scan and it’s looking like lung cancer not much more info. I have no symptoms apart from a sore shoulder blade, I was referred for a chest xray in Dec after having a bad cough from what I think was covid. I have a biopsy on the 3rd and should have a treatment plan by the 11th. I feel fine my cough has gone and I am going in the gym. Wheezing also has gone. I’m in shock I think they are doing a biopsy on my chest lymph nodes as think there may be a spread. Told not curable but treatable I don’t know what this means. They talked about chemo or immunotherapy but need biopsy results. They focussed on I am fit and healthy and have no symptoms. Any positive vibes or stories welcome. I don’t know what to tell my children 21 and 18. Thanks for listening x
new diagnosis : Hi I am new here. 4... - The Roy Castle Lu...
new diagnosis
sorry to hear your news . The waiting for results is the worst part for sure , its like torture 😞once you know what your dealing with take it from there , sending positive thoughts your way .x
Hello
Please don't despair . It's very painful, waiting to have biopsies, waiting for test results et cetera. Just put it to the back of your mind until you get the results, I know it's very hard , the thing is everybody on here has been through the same thing.
If you get in touch with Ellen at the Roy Castle Foundation she will send you a link to our Tuesday night zoom call with all the girls, that's where we can talk about what's going on. Everybody is very friendly very supportive no negative thoughts . Ellen 07950857819 .
The next meeting isn't until the 9th of January .
Hugs
Rachel
Hi - 5 years ago I was in your shoes - Stage 4 with brain and adrenal mets very poor prognosis - felt my life was over. Well I was able to have immunotherapy and at the time no chemo just Pembrolizumabab - I’m was able to tolerate side effects and complete md the 2 year cycle in November 2020. I had stereotactic radiation to brain -,twice now but am ok 🤞. I also was able to have ablative radiation to lung after tumour shrank in 2019 Ibhace had no treatment apart from brain in 2021 and so 3 years NED - scans not as often as I’d like - they are my comfort blanket if you like. I wish you all the luck in the world - I too had 2 daughters to tell - they will be supportive x
Thank you x
I know how hard this is for you - the other thing I would say is be your own advocate - ask the questions, try be to prepared with everything written down before consultations - I so often came home very cross with myself,( especially if I was alone which was most the time as my girls live over 2 hrs away and work, ) as I’d forgotten to ask or query something. Then you may not see them again for 3/4 weeks and not always together same person, All the best x
I've been on treatment for my lung cancer for almost 2 years, and have led a 95% normal life, with travel, holidays, daily exercise etc. Like you I had a chest X ray and then a CT scan. The biopsy I had was from lymph nodes in my chest, an EBUS procedure. My cancer is stage 4, with spread to bones, but turned out to be EGFR+, which meant treatable but not curable. The waiting for results and treatment plans is hard, and hearing the words lung cancer is shocking. But have faith in your Doctors and use forums like this for information and support. There quite a lot of us out there! Hope the next few weeks go well for you. Xx
So sorry about your diagnosis. It sounds much the same as mine five years ago. Yes, you heard it right, five years! You wanted to hear positive stories and there are many on this forum! I was stage 4, incurable but treatable. No sign of the blighter in my lung for two and a half years now and the hole in my spine seems to have grown over. I have lived a full and pretty normal life since diagnosis (apart from a few days of lying low around the initial chemo sessions). I have kept the cancer secret from all but a handful of people (my way of dealing with it - don’t like a fuss and seeing other people worried). I just work my life and activities around it. Perversely, I quite enjoy the challenge of keeping my cancer secret. (COVID was a weird one where I had to pretend I wasn’t shielding when I was!). And I see positives in the fact I’m medically monitored very closely all round and am ‘in the system’.
The toughest bit was telling my children who were 18 and 20 at the time. I was way into treatment before I told them because I didn’t want to pile worry on them when they already had exams on their plate, etc. Being a coward, I toyed with the idea of not telling them at all but my oncologist said I really must. Hearing the words come out my mouth was horrid and the looks on their faces. But by that time, I was well up to speed and could answer all their questions - although they both jumped on the doom-laden Google which upset them. I repeatedly promised them that I would be honest throughout and said they could come to the oncologist consultations with me to hear it first hand if they wanted. I think the total transparency has helped and, if anything, strengthened our relationship.
So, on January 18th I shall be raising a (secret) glass to celebrate five years. I hope in 2029 you’ll be doing the same! I know I’ve been lucky but more and more of us are getting lucky! The stupid Google stats just haven't caught up with it yet.
All the best to you.
Thank you for replying your story along with all the others inspires me and gives me hope. I have also toyed with not telling them - I am defo waiting until I have all the facts and a treatment plan at least. The problem is my youngest is a worrier and I am not sure how he will deal with this information.
Dear Clairemc0974
Welcome to the forum and so sorry to hear you have been told that you may have lung cancer. This can be an extremely confusing and stressful time for you and your loved ones.
You may find our booklet on lung cancer diagnosis of use as it details the investigations, types and treatment of lung cancer: roycastle.org/app/uploads/2...
There have been many advances in the treatment of lung cancer with new treatments such as Immunotherapies and Targeted therapies. It is encouraging that you are fit and well which is always a good starting point for any treatment, but can appreciate that it is a very distressing time for you.
Although a lot of cancers cannot be cured , unless detected very early, Lung cancer can be managed/treated for a number of years, providing extension and quality of life; the biopsy will confirm if it is cancer, the type and if there are any biomarkers which may respond well to either Immunotherapy or targeted therapies.
It may help to look at this link from Macmillan support on how to tell your loved ones: macmillan.org.uk/cancer-inf...
You may find that you want a lot of information or it is all too much to look at, it is a very personal choice.
It is a difficult time awaiting investigations and results, and it can take 2-3 weeks to get the full biopsy results. Initially the first week you should know if it is cancer or not, then the additional weeks are to determine if there are any biomarkers present that would make you eligible for Immunotherapy or targeted therapies.
All our information booklets on lung cancer and treatments can be found on this link:roycastle.org/help-and-supp...
Ensure you have plenty support around you and yo
You are welcome to contact us either to speak to one of our helpline nurses on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email us at lungcancerhelp@roycastle.org
As Rosegarden mentioned there are online support groups through zoom and you can contact Ellen by email at ellen.knapp@roycastle.org you may not get her on the mobile at the moment as the office is closed and reopens on Wednesday 3rd January 2024.
This is the link to our online support sessions: roycastle.org/help-and-supp...
Our helpline hours this week are reduced to 11.00 - 3pm today and tomorrow and you are welcome to call for a chat.
Kind regards
The Roy Castle Support Team
Thank you. I have my biopsy on the 3rd and an appointment made for the 11th with my nurse where she will go over the results and let me know the treatment plan. It’s been really quick as it is through a new scheme in our nhs which has a 21st target from referral to results.
We do wish you all the very best and please contact us if you would like to discuss anything. It is good it is moving quick for you and hope this new scheme in the NHS is of great benefit to many people.
Kind regards
The Roy Castle Support Team
your shock is understandable and it can be a whirlwind of activity without much clear or meaningful communication. I felt similarly this time of year in 2010 when I'd been admitted via A&E (a chest x-ray taken the night before when I'd been discharged showed a 'lesion' on my left lung) and kept in for a week, misdiagnosed and treated as uncontrolled asthma. Symptoms were strange for me but as a never smoker, despite the x-ray showing something untoward, I was treated as anyone else with chest infection/pneumonia etc and nurses positively encouraged me that it was uncontrolled asthma as the word 'shadow' hadn't been used. It took many weeks to get a CT scan as the scanner had broken down and parts had to be ordered but when that showed something large, I was sent for a PET scan then a letter came through inviting me to see a cardiothoracic surgeon in a couple of weeks time. however a few days later his secretary phoned telling me to go first thing the next morning to a different hospital to see him (ours was not a surgical centre) where he told me that this large mass had to be removed with half my left lung! In my case, they didn't wait for a biopsy as the mass showed itself clearly on all images. I had the surgery 16th Dec and came home 22nd Dec, with follow up on 13th Jan when I learnt that it had been non small lung cancer (adenocarcinoma - 7cm tumour).
As a never smoker it took some getting used to..... and when I started raising funds for Roy Castle lung cancer charity and became more involved in lung cancer research, I learnt how few in the UK are detected early enough for surgery to be an option. My op was in 2010 and diagnosis in 2011. At that time, there was much less known about lung cancer and the only specific mutation with a targeted treatment was EGFR and my resected lung had been sent to pathology during my surgery and I didn't test positive for that.
Since that time, the treatment landscape has changed beyond recognition as has my knowledge and awareness through my involvement. Treatments exist now and are in routine use like immunotherapy, targeted agents (many of them for different mutations) and combination therapy is common.
The majority of UK patients are detected at a stage that is treatable not curable and many live for many years as some on here have already explained. For many, even if a treatment stops working, there are others available or in trial that become approved for use so never ever give up..... many are shocked at others commenting how well they look and they themselves are surprised how they're able to live with something that can be so serious.
During my involvement I've been privileged to meet and work with many lung cancer survivors - many of whom have lived decades (one is almost 35 years out from his treatment) and others were 15, 18 and 20+ years - some of them sadly dying in the last few years but none from their lung cancer..... but we rarely hear about survivors.
Try not to google as it throws up all sorts of outdated inaccurate information and mostly about other countries.
For trusted information sources, Roy Castle lung cancer information regularly updates its information on all aspects of lung cancer from the many investigative tests involved, all the different treatments, to aspects of living with lung cancer including eating well, breathlessness improvement techniques, financial aspects to consider, travelling and many other aspects.
It's good that you're going to the gym, keeping active is one of the best things you can do for your lung health - I was an active distance swimmer and have gone onto swim much much further than I did (previously 130 lengths 2-3 times per week) with half my lung removed. My surgeon telling me that my recovery was up to me - if I sat/lay around, the remaining lung would not redevelop but keeping active would help it. In a period where so much seemed beyond my control, that phrase felt empowering as if I could take some responsibility for my recovery. There are now many support groups like this, Facebook and in person groups and some are for specific mutations which the biopsy may reveal. Even if it has spread, there are many treatments.
What you tell your children will be better done when you have more information and hopefully a treatment plan, otherwise they're likely to google too and find inaccurate information that could frighten them as it does patients.
We're all different and often on different treatments even for seemingly the same cancer type but that's the nature of lung cancer treatment today and it's forever progressing. Wishing you the very best of luck as you set off on a 'journey' that many of us have taken before - support and help are available so do reach out for it as you have done.
Thank you so much for your replay and sharing your journey. I agree wait until I know all the facts and the next steps before I tell them x
Hi.
I’m nearly 3 years in from diagnosis of stage 4 NSLC with no evidence of disease for the last 2.5 years
Chemo and immunotherapy.
Living full and normal life. There’s very definitely hope. The treatment and survival landscape is very different to even 5 years ago.
Much like Jeanette, my cancer was diagnosed by n 2010. I was already stage 4. As she wrote, there are so many innovations in lung cancer treatment, it's been amazing to watch.
Getting a complete diagnosis is a marathon rather than a sprint There will be a pathologist at the surgery center who will look at it immediately to determine if it is small cell or non small cell. If it is non small cell it can take up to 72 hours to determine if it is adenocarcinoma, squamous, or some other form is nsclc
A bit of the the tissue will be sent for testing to determine if it has a mutation that can be treated with a pill rather than chemo Also they will test the cancer to see how much of a protein it makes called PDL-1 which will help them determine if immunotherapy is an appropriate treatment
My 13 years survivorship is what is meant by treatable, not curable. Patients are surviving so much longer now.
All of that said, plan for the worst and hope for the best.
The waiting for results is so hard. Lots of good advice has been given to you. Getting support from others in a similar situation I have found to be useful. Try to do some nice things before you start your treatment. Also worth checking that they have tested for different mutations and noting which ones they are, as testing for these can make a big difference to the treatment path that you take. Try to take one day at a time too, not easy. I know. I was diagnosed with stage 4 10 years ago and given 10 months to live, thanks to research I am still here. I wish you the best response and best treatment plan xx
Hi the waiting is the worst!!
I was in a similar position 3 years ago, scared and not sure what the future held for myself and my family!!
I was inoperable too. I couldn't believe it., as I felt so well. Once you have a treatment plan, you will start to feel more in control, and more positive about the future. I've had 3 lots of treatment, immune therapy chemo and now on target therapy. I have continued working, my company have been very supportive, and allowed me to take time off when needed. Also allowed me to work from home. Hope all goes well for you.
Hello Clairemc0974
I'm sorry to read your story but welcome to the forum... you'll find lots of support and advice here.
It is sadly true that many people with lung cancer are diagnosed at a late stage, so are considered "treatable but not curable". Whilst it is the most awful shock to get this diagnosis, there are a lot of excellent treatments available for lung cancer now.
My husband was diagnosed three years ago when he was 53 - a non-smoker and someone really fit and otherwise healthy. Our daughters were 16 and 14 at the time. I know you'll understand how hard it is to tell your children something like this. We made sure we knew what the treatment plan was before we told them, so we had some answers. He then made very clear to them that whilst he had a cancer that could not be cured, it was very treatable.
As others have said, be very careful with Google - so much of the stuff you'll read is really out of date and it can be thoughtless, frightening and depressing. Many people are now living really well with late stage lung cancer because of the targeted treatments and immunotherapies.
So its three years since his diagnosis...he had 4 chemo + immuno cycles, and now has monthly immunotherapy. He is "NED" - no evidence of disease - and continues to live his life pretty much as normal.
I wish you all the best as you start this journey.
Sarah x
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