Doing well after surgery and diagnosis of lung cancer

[YellowBirdLady]

Hi, I am in the process of waiting to see if my lung nodule has grown which is a spickulated one and I have lost weight. My ct scan results will be a couple of weeks after when I thought so this is quite stressful.

On the Internet there is lot of negative stories about lung cancer and I was advised to post on here to find out how people are coping and if people would like to share some positive treatment outcomes.

I am on my own with two children so am finding the wait very tough mentally and am catastrophising.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi YellowBirdLady

Welcome to the forum and hope you hear positive encouragement from others in the forum.

As we have been in touch already, please know that you are always welcome to contact us by our free phone helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively our email is [e-mail]

I hope you find the forum helpful and wish you all the very best.

The Roy Castle Support Team

[Hopeful51]

Hi - we were in a similar position last year and fully understand the stress you are under and the wait is definitely the worst. Read through the history of posts in this forum and you will see there definitely is hope and some amazing stories whatever diagnosis or stage you are at. You will see that treatments have advanced and life expectancy improved even for advanced stages. I worried myself sick that I was losing my husband and in the end he had surgery with no follow up treatment required and is back to normal life so don’t focus on worst case and stay positive

[foodbankcupar]

My lung cancer was diagnosed nine years ago. Had radiotherapy then two years of immunotherapy. It spread to the lymph nodes in my neck. Had surgery to remove the diseased ones. Now happily in remission from cancer. Just being monitored.Fabulous service from NHS. Try to be positive at all times.

Kevin

[JanetteR57]

Sorry to read of your anxiety whilst waiting for your results. Most lung nodules do not develop into cancer and 'spiculated' describes its appearance under a microscope rather than being a prognostic characteristic. There are strict guidelines for nodule management in the UK under British Thoracic society guidelines and it sounds as if you are 'under surveillance' if you're having a CT scan. Losing weight can be a symptom of many causes including stress and many who do have lung cancer did not lose weight. The internet is full of outdated, inaccurate and scary stories especially when it comes to cancer and especially lung cancer. My own tumour that turned out to be 7cm (much larger than lung nodules) was removed by open surgery in Dec 2010 diagnosed in January 2011 and I was back at work, active and swimming just a few months later. I was 52 at the time. I've been involved in lung cancer research since 2013 and the treatment landscape has changed beyond recognition since.

There are many 'case studies' and patient stories on Roy Castle lung cancer foundation website - a trusted source of information for patients, relatives, public and healthcare professionals that are worth reading or watching the videos. This is their latest campaign dispelling the many inaccurate myths about lung cancer. roycastle.org/campaigns/be-...

It's natural for our imaginations to run riot and think the worst but if you're already under surveillance, that's a good sign at least you don't have to wait to get an appointment to get into a system. Over the years since I turned up in A&E with strange symptoms for me and a series of imaging revealed the large mass and then having the surgery before a biopsy so waiting a month for the results of what exactly they had removed, I've had to learn to deal with long waits whether for tests or results. For me, I find it helps to distract myself - I've kept working throughout and as my surgery was in a December I kept busy with Xmas related tasks. I can imagine with 2 children there is always something to do with them or for them but try and do something you enjoy or that gives you a feeling of satisfaction to distract yourself whilst waiting. good luck.

[packla]

Hi YellowBirdLady,

I had stage 2 lung cancer in July 2022 and was offered a lower lobe lobectomy which I had on 27th July that year. I was only in hospital for 2 days and the op was a total success. I was offered "adjuvant chemotherapy" just to be on the safe side to ensure there were no microcells floating around.

I am now 2 years in and have had 4 x 6 month "all clear scans" and now on yearly scans for the next 3 years.

If you want to see how I was at 4 weeks post op then search "Ian's story" on the Roy Castle Lung Cancer Foundation website under the campaign tab and you can watch my video or copy and paste the link below.

roycastle.org/ians-lung-can...

Wish all the best for your journey.

Ian

[sassassas]

Hi YellowBirdLady

I hope you'll also get some comfort from my husband's story. He was diagnosed over 3 years ago, completely out of the blue (he was 52 at the time) with advanced NSCLC, lots of tumours in his lungs and extensive spread to his bones and lymph notes. He had chemo for 4 cycles and immunotherapy for 3 years, so he's now not on any treatment. He's just had his latest scan results and he's still NED - no evidence of disease.

Wishing you all the best when you do get your CT results. Sarah x

[YellowBirdLady in reply to sassassas]

Thank you for sharing this story. All your replies are helping me so much with this difficult wait. It is still ongong as there seems to be a delay with the consultant viewing my ct so I think my appointment and my results won't be this week either.

I also now have a fast track referral for a breast lump which I think is totally unconnected just bad timing, but I feel.that it could very easily turn out to be fine as there are lots of things it could be. Apparently the assessment for this has much less waiting involved so that is a relief.

Your stories have shown me that even if things have spread about there are still treatments which work and it is possible to carry on without huge changes to your life which is helping me to remain as positive as I can until I fully know the ball park.

[Dariada]

I’m very sorry for the anxiety you’re feeling. I think we can all relate. The internet is very scary but if you feel you must research, try to stay of reputable sites. Here in the United States there’s the National Institute of Health which can still be scary but at least I know I’m getting authentic information. I’ll be thinking of you YellowBirdLadu

[YellowBirdLady in reply to Dariada]

I agree with you, there is a lot of outdated information which is just not helpful at all.

I decided to stick to the Roy Castle site as I feel that presents the information well and whilst it is important for me to gain understanding to understand my appointment letter etc it is tough if this causes excess worry which I admit I did find at the beginning going online.

People's stories are so important I think as statistics online is the toughest bit and I think the landscape has changed since some of those were collected.