So last September I was on my annual break in beautiful Weymouth when I received an urgent message to contact my Doctor at home. Prior to going I had been experiencing some shortness of breath so my GP sent me for an x-ray so immediately panic set in! (Previously mis-diagnosed with cancer in 2008 and had unnecessary bi-lobectomy to my right lung and chest wall reconstruction, losing 2/3 of right lung and 2 ribs!). I was on holiday alone and rang to hear I had lesion in the same lung and was being referred as cancer suspected! Totally shell shocked!
I won’t dwell on my awful 4.5 hour drive back to Leicestershire and the next month or so - far too long! Telling my two girls, who both live away, was just awful but I had to as I had no one else. Eventually diagnosed with stage IV NSCLC with mets to my brain and adrenal gland. Prognosis was not good and due to brain tumours I had to surrender my driving licence straight away which left me somewhat dependent on others. But soon got a bus pass and mastered the bus routes - most of the time!
Waiting to find out if I could have immunotherapy took some time but I was eligible and also able to have SRS for my two brain tumours.
I won’t pretend it’s been easy but with the help of my two girls, my lung cancer specialist nurse Jane and consultants in Leicester and Nottingham I am still here and generally doing really well. A recent PET scan shows my only active cancer left is in my lung - shrunk from 4 x4.8 cm to 1 x 1.7cm - my consultant referred me for Steriotatic Ablative Radiotherapy to this lung tumour and I start next week!! Every other day for two weeks - never had a tattoo before but now 3 tiny tattoo marks on my chest! There are risks but I believe they are worth taking. I have to stop Pembrolizumab during this time but straight back on it hopefully to see out the 2 years allowed.
I am not big into posting but hoping my story so far helps give others hope. I am very active and positive and being given an opportunity for further treatment is such a blessing so I can have more time with my amazing girls. Oh and I am hoping to get my driving licence back come November when it will be 1 year since treatment to my brain tumours!
Wishing everyone the best of luck, stay strong and as positive as you possibly can xxxxx
PS the photo is me and my lovely ‘grand dog’ Bessie back in Dorset this year!
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Elt79
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Sorry to hear about what you have been through but delighted you are doing so well. I also have Stage IV NSCLC but with bone mets diagnosed Feb 2016. I have had radiotherapy, chemo, a pleurodesis op, denosumab injections for my bones and have been receiving pembrolizumab immunotherapy since December 2017. My prognosis was 9 months and am so pleased to have exceeded this. Have a scan next week and appointment with the Oncologist the following week so just into that ‘scanciety’ period which you can no doubt understand. Hope all goes well with the stereotatic ablative radiotherapy. Please post to let us know how you get on. Lovely photo of you and your ‘grand dog’ .
Sending very best wishes and lots of positivity 🌻🌸🌺
Thank you so much and I will update on the treatment as I go along. Glad to hear you are doing well and so do understand scanxiety!! Bessie is beautiful and I was so pleased as never expected to get back there after last year!
Sending positive thoughts and best of luck for your scan results 💪💕
Wow I thought I was strong and positive facing lung cancer with no support from my 2 daughters who live locally,I survived with no chemotherapy,I send you my positive wishes,as,those thoughts have got me through the loneliness of cancer and rejection from loved ones,keep strong,my thoracic surgeon said”watch the sunset,and drink the beer “ and I have.
So sorry to hear of your issue with family - it is hard enough to deal with this! My girls and I don’t always agree but having been on my own for over 25 yrs they know how independent I am and as long as I have the strength I will continue to be so. You must be a strong positive lady to deal with this and wish you continued strength. I count every day a a blessing as I go through my treatment and am game for anything that may help me stay around longer!
Wishing you all the best - stay strong and positive!💕
Your post has certainly come at a helpful time for me.
I was told that I have NSCLC in early July, and had excellent consultants who had all manner of tests done with more consultations over the following 7 weeks (CT, PET, EBUS, Echo Cardiogram, ECG, then a guided needle biopsy.)
I have a tumour in each lung and it spread to adrenal glands.
First choice had been radical radiotherapy, but after the needle biopsy of my neck was positive, immunotherapy was decided on, and I was passed to the appropriate consultant in the team.
I have my first Pembrolizumab treatment tomorrow. I've passed feeling afraid of the treatment, but am worried whether it will agree with me, and more importantly work in stalling or reducing things.
I'd love to have it shrink the two adrenal gland ones, and then perhaps the two lung tumours could be treat in a similar way to yours ....who knows, but I must keep hoping.
So far, their only real concern is that because I had Ulcerative Colitis 4 years ago, it could be triggered by the treatment. Got fingers firmly crossed about that because the colitis was very uncomfortable and painful, not to mention the unpleasant side effects of steroid treatment.
It's easy to feel afraid and unhappy in the small hours when the mind goes to places you'd rather it didn't.
Even watching TV, there always seems to be some reference to cancer, even though you feel sure it's wasn't spoken of nearly so much before you had it!
Reading your post has helped me to feel a bit more positive about the whole thing. So happy to read that in spite of everything you're doing so well - hope your radiotherapy goes really well.
Ah thank you - just love her to bits! I have been very fortunate with Pembro as side effects bearable to date! Someone advised me to keep very well hydrated before and after and I must admit it seems to help me. Itching is common but I find antihistamines help and now and then I get very odd rashes! But other than that not bad at all.
Wishing you positive thoughts, strength and all the luck in the world for positive outcome💕
I had to reply as understand what you are going through.
I was diagnosed with lung cancer March 2017 and 5 brain tumours in July 2018. After lobectomy, chemo and radiotherapy my CT scans are so far clear. After Cyberknife to brain mets, these are all shrinking and nearly gone. We cling to hope and make the best of it. Stay strong and keep smiling.
Thanks for posting and sharing that whatever the ups and downs (and there can be many of these on the roller coaster of lung cancer), you're testament to the 'just keep carrying on' approach. I'm sure it helps - I'm just coming up to my 9th anniversary of turning up in A&E with strange symptoms, left upper lobectomy a couple of months later and diagnosis a month after that (Jan 2011). From what you've described, it doesn't sound as if your original surgery was futile after all - they must have seen something to remove two lobes. good luck with your treatment and keep up that great attitude - lovely picture.
Wow that’s great! 9 years is really good news. I will continue to be positive re my current treatment. Re my surgery they did see something but failed to do biopsy and there were many other errors I won’t go into it happened - I made my peace with the Trust years ago - worked for 30yrs there and currently treating me now!
With a best wishes for your continued good news! x
I didn't have a biopsy either. It showed on chest x-ray yet ignored and discharged from emergency admission, readmitted the following day by ambulance but misdiagnosed as 'uncontrolled asthma' and spent 6 days not responding to asthma meds. as a never smoker, CT not rushed (had cough so couldn't lie still) but when appointment came through was called and told scanner had broken and needed parts so took a month to get a CT scan. Then given results and 2 days later sent for PET then had a letter for surgeon in 2 weeks' time but called a few days after scan to say I needed to see surgeon urgently. He had no idea it had been 7 weeks at that point so surgery was booked in to remove the large mass and upper lobe and then determine what it was with follow up surgery. It turned out to mucinous bronceoalveolar carcinoma - a type of adenocarcinoma but the specific type I had didn't respond to chemo and I wasn't EGFR positive (the only test available at the time) so my follow on treatment has been 'watchful waiting' which brings its own challenges... I also worked in the NHS (and still do) but still shocked at the number of cases misdiagnosed and diagnosed late in the UK overall. Glad you've made your peace - my action taken was to get involved in the lung cancer research community to try and influence change for the good for others. Like you, I'm thankful every day to still be here....
Bless you - obviously been through a lot! I too am disappointed that whilst we do have new drugs latest results just published show that UK is still lagging behind other countries and the wait for treatment still not achievable. Best wishes for your continued strength x
I was speaking at an event this week for our GPs (on Tuesday) and showed them the data detailing how behind other countries the UK is on all cancers (apart from breast) as my talk was about the number of patients who have cancer detected as an emergency referral or emergency admission. Most didn't believe me despite me saying the statistics were from the International Cancer Benchmarking Partnership CRUK Early diagnosis conference this year. It's complex but Denmark and the UK lag everyone else and we are the only two countries cited who use GPs as gatekeepers into specialist tests, further confounded by decades of policy that tells the public not to bother their GPs with minor symptoms so by the time people are suffering, often it's spread. Also the lack of awareness of treatments available and developing all the time in every type of treatment can delay people seeking help as they may feel there is little that can be done. Also the numbers of lung patients outnumber many of the major cancers put together so feel CRUK's response this morning on TV is a missed opportunity. We need to learn from the other countries who have better survival rates and see what more we can do. Some real progress is being made in the UK on pilot schemes for lung health checks/MOTs for at risk population, some Trusts are replacing their old CT scanners to ones capable of lower dose scanning to reduce the radiation risk, surgical centres are offering keyhole surgery more than ever (so less fitter patients can have resection), combinations of chemo/radiotherapy/immunotherapy are changing all the time as we learn more about the specific biology/pathology driving lung cancer. However despite smoking rates reducing for the first time this year at faster rate in the UK, the damage can take decades before it does or doesn't develop into cancer somewhere in the body (not necessarily the lung). Other countries use CT as first line for checking for lung tumours - we use Chest x-ray (much of our kit is too high dose for more frequent CT scanning), they also use proton beam (this only just opened in Manchester and mainly will be used for childhood brain tumours) and there is still huge variability across the types of hospitals dependent on whether somebody is treated in a specialist centre or smaller district general hospital. Denmark has put more effort into improving their situation since the last data was published but our response has been patchy. Collective action needed by everyone - as well as more survivor stories so patients can feel more hopeful at the potential for treatments - many living years now as a result of new agents and immunotherapy although not suitable for everyone and the aim is to get it to a 'chronic disease' situation - i.e. treatable if not curable where it has spread beyond the lung. Thanks for your kind wishes and good luck to all.
that's great news so pleased for you, have you tried going vegan, I did last Oct and 5 months later my cancer is dormant and has been for 6 months, next scan a week on Saturday, keep up the good work your doing brilliant and wishing you all the best 😊👍❤ Dave
That’s great news!! I am not vegan but eat very little chicken and fish - love my vegetables and fruit so fairly healthy diet overall but may give some thought! My nephew and his partner recently switched and both loving it so far.
Best of luck for positive results from your scan!💪❤️
thank you so much for sharing your experience,( as well as the picture of Bess who has won the hearts of the team).
I hope you can see the value your story has had from the replies so far. For some people it takes a lot to share what they would rather never have had to experience and for others it means a lot to know someone understands and can imagine what they are going through.
We appreciate the openness and respect of all our community members and hope that providing this platform creates a place people can share their hopes, fears and experiences.
Thank you so much for sharing,
Lorraine and the team @ Roy Castle Lung Cancer Foundation
Bess definitely wins 💕 I am so glad it did this post as I remember so well how I felt last September and so happy to be here and able to hopefully give others hope and also recognise that there are many changes that can and do happen along the way. Thank you and my daughter would confirm that Bess wins many hearts and also knows it🤣x
thank you for sharing such positive news , it helps someone like me who is newly diagnosed and waiting for treatement to continue to have a positive outlook.
What a beautiful story to wake up to. So glad that you are doing so well - you certainly look amazing.
My dad was diagnosed with stage 4 lung with Mets to brain in April. Other than radiotherapy to the brain they have decided not to treat him. He was approved for immunotherapy but at the last hour they decided he wasn’t active enough to sustain the treatment (the brain tumours have affected his mobility )
We are gutted beyond belief. 3-6 months we have been told and he’s approaching 3 months but looking quite frail some days. My life has literally fallen apart.
Keep fighting you have got this - sending all my best wishes
I am so sad for you it must be really difficult for you all. My prognosis was extremely poor and have surprised everyone with how well I have responded to treatment. I am managing on my own and count every day as a blessing. Wishing you all the best and sending huge hugs- take care know it can’t be easy for you💕
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