Second Anniversary : Hello Lung Cancer... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Second Anniversary

Beepers7 profile image

Hello Lung Cancer Survivors,

I haven’t posted in a long time , but today I celebrate being NED after 2 years. Stage 3a. non small cell. Chemo radiation, followed by surgery , more chemo and now Targeted adjuvant Tagrisso.

It’s been quite a journey, but like so many of you we fight on.

This forum has offered me great advice and encouragement. Thank you.

God Bless , SteveO

34 Replies

Your post gives me hope Steve, I’m still waiting lung biopsy result, no symptoms of lung cancer it was picked up by accident on CT scan for bowel symptoms which were clear. I’m scared and frightened and don’t think I can fight this. Felt really ill after lung biopsy, my breathing was fine until they messed with my lungs. Has yours spread Steve I don’t understand these stages. I’m only 65 and wanted a few more years, but I’m sure I’ll be dead next year, it’s cruel, it’s messing with my head, can’t sleep can’t go bike riding anymore because I’m frightened of dying when I’m out. I wish you so much.

Beepers7 profile image
Beepers7 in reply to Loimie

Hello Loimie,Your response broke my heart. I know how desperate and frightened you are, but you can beat whatever you hear from your biopsy. Cancer treatment is no longer a death sentence. The medical treatments are getting better every day.

My advise to is to not give in to the negative thoughts. Force yourself to get out and walk and ride your bike. Getting outside pays many benefits physiologically and physically. I walked, hiked, road my bike and most importantly prayed throughout my journey. You can do this.

There are many cancer organizations to help you with advise and information. One I highly recommend is Go2 Foundation.

Be strong, you can live many more years!

God Bless you

Loimie profile image
Loimie in reply to Beepers7

Hello Beepers, I’m so so grateful for your reply, you are so strong, I pray and hope but I really think I’m done, lung cancer is the worst possible nightmare, my son gets married next week and I should be so excited, but having to put on a happy face, he doesn’t know anything yet. God bless you too Beepers and I wish you happiness in life. I’ll look at Go2 foundation, thank you

Beepers7 profile image
Beepers7 in reply to Loimie

Loimie,I see you went for a bike ride👍🏻

Liampaul03 profile image
Liampaul03 in reply to Beepers7

I was diagnosed in 2011 and still going strongStay positive

Florrie63 profile image
Florrie63 in reply to Loimie

Hi Loimie I had lung cancer had surgery and chemo I’m two years cancer free now and I have copd in my other lung so was not the best candidate for surgery but no issues I sailed through it keep your spirits up there are lots of treatments for this wishing you well xxx

Loimie profile image
Loimie in reply to Florrie63

Hello Florrie, thank you for caring, it’s nice there are so many people on here trying to keep my spirits up, but it’s hard isn’t it. Two years cancer free is amazing. Best wishes.

Eglingham profile image
Eglingham in reply to Loimie

Hello Loimie,

I know your fear. I'm 53 and was diagnosed with stage 2 non small cell lung cancer in February 2020, the bottom fell out of my world and I even started planning my funeral. I had all the tests to determine stage and type then was given the plan, this is where I then got my strength to focus that I was going to fight as I am to young to leave my loved ones now. I had surgery to have some of my right lung removed then a second surgery to take the rest of the lung away. Here I am 15mths later walking more than 5 miles a day although at a slower pace but what's the hurry. You can do this! The treatments are amazing these days and a positive mind goes one hell of a long way, if you need to chat or have any questions I'm here to chat. Get out on that bike and bring your fight back!

Loimie profile image
Loimie in reply to Eglingham

Hello Eglingham, yes your right the bottom drops out of your world, a bad dream you can’t wake up from. You are amazing and an inspiration to me, hopefully I will be the same. Yes, I’ve wrote letters to give my boys, funeral planning, make sure they know I have a donar card! I’m waiting lung biopsy even though bronchoscopy biopsy showed no cancer I still know something is there. I’m hoping they can remove it, left upper lobe. You know though life will never be the same again, my son marries next Thursday and just want give him the happiest day ever, I’ll tell him after because I don’t want to spoil a beautiful day. You keep walking Eglingham!! Thinking of you always. xx

Eglingham profile image
Eglingham in reply to Loimie

Hi,I found keeping it to myself till I had all the details and the plan, sometimes it's more difficult for your loved ones to deal with, get all your info and plan then approach your loved ones with a positive attitude, this is what I have got but this is the plan and it's going to be ok, as difficult as it is for some strange reason it keeps all involved up beat and positive. Things are going to be ok, surgery is a hurdle but not as bad as you think and remember it can be curative. I kept walking and climbing prior to my surgery to make sure I was fit and it helped clear the mind for the task in hand. Stay strong 💪 the waiting for results is the worst part. Stay in touch and get on that bloody bike ☺

Loimie profile image
Loimie in reply to Eglingham

Haha! Yes I will get on that bloody bike!! Just going out now! In the rain! Your right, I need to know what I’m dealing with myself, not got an outcome yet and like you say approach them with positives. You’ve given me strength to stay strong, just wish I could get a good nights sleep, it takes everything from you doesn’t it. Hey! Stay in touch, bet you have family too, thinking of you. xx

Eglingham profile image
Eglingham in reply to Loimie

Haha! Have fun on that bike 🚲 lovely to hear that bit of positivity shinning through. Take care and keep me updated.

Loimie profile image
Loimie in reply to Eglingham

Will do, please keep in touch, you’ve helped me such a lot!

Eglingham profile image
Eglingham in reply to Loimie

Hi Loimie,

How are you today any news on your results ☺ x

JanetteR57 profile image
JanetteR57 in reply to Loimie

Hello Loimie, I know right now that you are scared and for most of us until diagnosed, had the same reaction that there was not much that can be done. I went to A&E in the October 2 weeks after my 52nd birthday and a lesion was found on my left lung - just over 2 months later I had surgery to remove half my left lung and a 7cm tumour and in Jan was told it had been non small cell lung cancer - that was in January 2011. I have had no further treatment and was back working and swimming in March 2011. Since 2013 I've been involved in cancer research and there has been progress and changes in every type of treatment for lung cancer - for instance I had open surgery nowadays the majority is keyhole in the UK, people now have targeted therapies - when I was diagnosed there was only one target tested EGFR for which there was a targeted treatment and I didn't have it, ablation (stereotactic ablation - a form of radiotherapy called cyber knife) has changed the situation for many either their lung, spine or brain tumours, immunotherapy has improved outcomes for many and many new treatments discovered alongside changing dosage, timing and combinations of other treatments. I've met lung cancer patients who've survived 20+ years since diagnosis well before these newer treatments came along so never ever give up.... there's no reason why post treatment you might not recover enough to ride your bike - I was a long distance swimmer swimming 130 lengths (2 miles) several times a week and even with half my lung removed I've gone onto swim much further including one record session of 360 lengths (25m) which was over 5 hours continual swimming and swam 980 miles throughout 2012 and 989 in 2013.... rehabilitation and exercises are important to keep the lungs functioning and keeping active is a big part in recovery.... good luck....

Loimie profile image
Loimie in reply to JanetteR57

Your amazing Janette, an inspiration. I hope I can be too, but feel I'm losing the fight that hasn't even started yet. Been on bike ride today but just want to get home to my safe place. I hope I can have this horrible thing removed but early days, may not be operable, still waiting lung biopsy results. I'm shattered all the time, it even invades my sleep and crying all the time. Feel so ill after lung biopsy. Thank you for caring and I send my love to you.

JanetteR57 profile image
JanetteR57 in reply to Loimie

Thank you - I still think the hardest part to deal with is the start when you don't know what's in store and anything you look at on the internet likely to be inaccurate or outdated or sound very hopeless - the majority in the UK are not operable so when I found that out, I felt even more blessed that I'd been eligible for that at the time.... but anxiety and worry I've learnt over the years drain emotional and physical energy and don't change the outcome of what will be.... once you have a treatment plan, at least you'll know what's in store and plan for that but in the meantime, I found distraction always helped me and continues to when I have other health issues - keeping busy or helping others stops me from focusing on me.... good luck and hope you get some positive news before long... sadly it's really necessary to have all the tests done due to the personalised/targeted aspect of treatments and to eliminate what won't work as much as include what might but the waiting times are often much longer than people imagine whilst all the departments do their thing.... thinking of you...

Loimie profile image
Loimie in reply to JanetteR57

Thanks for you reply Janette, it really helps to to see how things are going so well for you, can I ask where did you get surgery, I don’t understand why in this country they say it isn’t operable, did you go abroad, perhaps the USA. Your in my thoughts.

JanetteR57 profile image
JanetteR57 in reply to Loimie

For many people in the UK (the majority) it isn't operable either - if it has already spread to lymph or other organs, it's usually treated with what they refer to system therapies i.e. chemotherapy, immunotherapy or radiotherapy to zap the entire body for cells but if it's contained within the lung, surgery can be used to remove it (local treatment) and often chemotherapy is offered to mop up any stray cells (adjuvant chemotherapy). Sometimes if it's behind the heart or too near other important structures even if contained within the lung, that's considered inoperable too and sometimes it's the patient's own health/frailty that may prevent surgery being an option - however in the UK (where I had my surgery) the majority of operations are now done by keyhole method (VATS/RATS) rather than the open surgery (thoracotomy) that I had so the procedure is much less invasive, less risk of infection and shorter length of stay in hospital. for some SABR (ablation - a type of radiotherapy) has been used to good effect for solitary lesions in those unable to have surgery also to good effect.... I have attended lung cancer conferences since 2013 and the global cancer professional community come together several times a year (ASCO in the US, ESMO in Europe, BTOG/SCTS in UK, and World Lung and others) to keep up to date and share information about treatments.... what differs are the healthcare systems, the availability of specialist staff, access to centres as much as anything.... I had no idea about any of these aspects before I became involved a few years after my treatment which was carried out in Birmingham UK by a surgeon from a tertiary (specialist) thoracic surgical centre... but the breakthroughs and improvements in treatments and knowledge about different type of lung cancers bear little resemblance to the treatment landscape when I was diagnosed.... never give up...

Manninmaid profile image
Manninmaid in reply to Loimie

I was so sad to read your post. I agree with what Steve has said. It is normal to feel desperate and frightened as it is obviously a massive shock and the wait for the biopsy results is stressful in itself. However whatever the results are, there are lots of treatments available and I think it helps to do what you can to help yourself too, in terms of diet, fresh air and exercise, mindfulness activities and trying to be as positive as possible.

In my own case I have stage 4 (terminal) lung cancer which has spread to my bones. I was diagnosed in February 2016 with a prognosis of three to nine months. I have had radiotherapy, chemotherapy, a pleurodesis operation and my current treatment is immunotherapy with denosumab injections to help protect my bones. It has been tough at times and I can’t do all that I used to be able to, but make the most of what I can still do and still have a decent quality of life.

I hope your cancer is at a stage where treatment is with curative intent, but even if it is the worst case scenario it is still possible to live pretty well with lung cancer. I would urge you to get out on your bike as the fresh air and exercise will be beneficial both physically and mentally. As regards the difficulty sleeping, there are sleep meditations and sleep stories online which may help, I find the Calm App can be useful too. There is lots of support available, not least from others on this forum,

Sending you best wishes and positive thoughts. x

Loimie profile image
Loimie in reply to Manninmaid

Gosh, you look so young and pretty to have this awful disease. Just found calm app, thank you. Love and best wishes xxx

Manninmaid profile image
Manninmaid in reply to Loimie

Thank you and very kind of you to say so. Glad you found the Calm App. It is a little random with the sleep story ‘Dream With Me’ at one end of the scale and ‘A Very Proper Tea Party’ by Mary Berry at the other 😂. I honestly think you will feel a bit more positive if you can take some control by doing what you can to help yourself. Please let us know how you get on and in the meantime please get out on that bike! xx

sassassas profile image
sassassas in reply to Loimie

dear Loimie I can add another positive story to all of these here. My husband was diagnosed in March this year with NSCLC - Stage 4. Surgery & radiotherapy therefore weren't an option. He's had chemo and immunotherapy, now he continues on the immuno (Avastin and Tecentriq) - we've just cycled coast to coast from Morecambe to Bridlington. 170 miles in 3 days! We wouldn't have thought it was possible a couple of months ago.

Keep as fit as you can, be outdoors, yoga, meditation, eat well - whatever works well for you and, the best advice I've been given, is take one day at a time.

Love to you

Loimie profile image
Loimie in reply to sassassas

Dear sassassas, so lovely of you to reply, thank you, I feel so lonely and frightened, even though I’ve got a beautiful loving family, I can’t help feeling I’ve put this horrible horrendous burden on them, life will change for them and that’s not fair, I want to just run away or perhaps best if I don’t have treatment then I’m not a nuisance. My husband thinks I’m mad thinking like that, but it’s my boys, I want their life’s to carry on without the pain of a mum with cancer. Wow!! That’s some cycle ride! You and your husband are in my thoughts and thank you for taking time to reply, it means so much. xx

This is wonderful news! Thank you for sharing it and I am sure it will also give hope and encouragement to others. So pleased for you. Keep on doing what you are doing . x

congratulations on your cancerversary! hope you're celebrating....

Amazing news congratulations x

amazing congratulations xx

Thank you Steve for sharing. I lost my husband four years ago (aged 67) after 3 years of being clear from cancer after lobes were removed from his infected lung in 2013. It gives me much inspiration that treatment has progressed and many people survive now with his diagnosis. Bless you for remembering this site that supports so many, both those who are just diagnosed, to those that live with the outcomes of lung cancer. Our Son was just 14 when my husband died and there was no one who could support us with the loss and devastation we felt. We used to read the posts on here to give us hope that many do survive and go on to have good lives (I never had the courage to write a post at that time as I could not put into words what we were feeling). And four years on, we have good lives with much purpose but there is still a void where my husband/Son's Dad should be, but my son and I remember him by caring for others and taking an interest in those who may be going through the trauma of lung cancer. Every time we read of someone who recovers, we smile and say, if only Dad was here, he would be so pleased to know that someone else has not had to go through what he/we did. Sorry this post is not all positive but the reality with lung cancer is mixed but just wanted to say thank you for your posting, it has uplifted us 🙂

Beepers7 profile image
Beepers7 in reply to sarahowen

Hello Sarah,So sorry to hear of the loss of your husband and you loving son’s father. We all face each day knowing cancer may return someday. So we treasure the days we get and try to make this world a better place.

So pleased you and your son are doing well and going forward. I’m sure your husband would want that outcome.

The flesh has disappeared, but the memories of our loved ones is always with us. A picture, an outing and a quiet moment brings them back close to us.

May you continue to live a wonderful life.

God Bless

JanetteR57 profile image
JanetteR57 in reply to sarahowen

so sorry to read of your loss - so sad - it's cruel but there has been some progress but not everyone responds to the new treatments in the same way but more are living even with stage iv with treatments and the aim is to get to a chronic treatable condition for more in future..... it's so sad when kids lose their parents so young - my younger sister died at 40 leaving behind her daughters 12 and 15 almost 20 years ago and then her eldest daughter died 2 years ago from a catastrophic bleed on her brain leaving behind her son aged 12 at the time... it's all taught me that we have to make the most of our lives whether short or long.... and let those we care for know what they mean to us... good luck to you and your family and thank you for posting now....

Loimie profile image
Loimie in reply to sarahowen

Bless you and your son, I’m sad to read your post. Thinking of you both. xx

Hi Beepers7 Happy Anniversary and agree this forum is a life line, health and happiness to you ❤

Beepers7 profile image
Beepers7 in reply to Ollie13

Thanks Ollie.👍🏻

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