I had an upper left lobectomy in November 2022. In January 2023 I had a CT scan pre chemo which showed a nodule on the right lung of 6mm. The oncologist put me on antibiotics for two weeks and the next came back clear so I started 4 cycles of Cistoplatin and Permetrexed. Another scan was done in May at the end of the chemotherapy and the nodule was back and spiculated,still 6mm. The oncologist was very surprised and ordered another scan. Nodule still there. I am now waiting until October for a further scan. I am trying to avoid further surgery and wonder if anyone out there has has a similar situation and how it was treated. I have heard of intense radiation as a possibility as there appears to be no lymph node involvement as yet. Any advice will be welcomed. I guess I’m disappointed that the outcome wasn’t what hoped for and scared of further surgery as I am unsure how my breathing will be. Thank you and gook luck to everyone.
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Understand your concern about breathing as it's still relatively soon after your lobectomy. Many nodules do not develop into anything sinister and many disappear/resolve on second imagine and many are triggered by inflammation and infection so that may have the case in your situation.
The speculation is the description of how it looks on the imaging. Others have had SABR (stereotactic ablation radiotherapy) for solitary nodules so worth asking about that.
In the meantime, keep yourself as active as you can as whatever treatment is offered, it will be better to be your strongest self. good luck.
Thank you for your reply. I think the waiting is the most difficult thing,especially with time on my hands( I live alone and spend too much time on Google!) I imagine that if it’s another cancerous tumor the options will be given by the oncologist.
Sorry to hear that - google can lead you down some awful rabbit holes as so much information is out of date and inaccurate when it comes to lung cancer and lung nodules. I've been heavily involved in lung research and management of nodules/screening for many years now and there has been so many changes in investigations, treatments and understanding through clinical and scientific research. Unfortunately the requirements for publishing such data is often based on funding/academic needs to tends to be in academic/scientific journals leaving a lot of information that's in public domain or in the first few pages of google searches woefully inaccurate for a lay audience.
The information on Roy castle lung cancer foundation is regularly updated by clinicians and patient review panel for readability and covers many aspects of living with lung cancer.
I always find distraction helps me - keeping busy helps me put such worries and concerns to the back of my head - helping others is a good way of feeling useful, or work, or swimming/walking. do you have any hobbies? could you take any up? colouring, puzzles, baking, gardening, dog walking, crafting, reading and many others have helped others - yoga and pilates are also good for focusing on breathing, stretching, are good for mental and physical health too.
maybe worth staying off the computer for a while. good luck.
Good advice Jeanette. I will stay off Google. I am relatively busy with two border collies and a cat. I read a lot,cook a lot and do swim and exercise. Recently have become a tad lazy but will get back on the horse. I am fascinated by your knowledge of lung cancer. I feel that as a ghastly disease, it gets very poor press and clearly not as much research as other cancers due to the stigma attached to smoking. Best Wishes Tara
Despite being a lay director in the NHS and community healthcare services when my own experience began, I knew nothing about lung cancer. 12 years on, many conferences attended, membership of national and international committees, contribution to cancers studies, patient literature, invited to various policy discussions, and funding committees for cancer research, every day is a school day!
I met a friend and colleague when I was appointed to the national cancer research institute end 2013 who said she found involvement in research 'stimulating' so I thought it may be a way to learn much more. I've done that - with residential workshops as a delegate and faculty member over the years and find being involved helps clinicians and researchers understand patient perspectives better too.
As a never smoker who developed lung cancer, had a 7cm tumour and half left lung removed in open surgery (keyhole didn't exist in 2010) I have never bought into the stigma argument and use my experience to help educate medics and others that anyone with lungs can develop lung cancer.
When I first became involved, I'd googled and frightened myself with such poor survival figures until I learnt how to read statistics and understand the way they're portrayed by lumping everyone together with all different types and stages of lung cancer is as much to raise additional research funding. When individual stages and types are detailed, there are very different survival statistics. I didn't know how to interpret things like 5 year survival and many other aspects. It's too easy to guess and get it wrong so I try and keep my mind open.
At the time of my diagnosis, less than 5% was spent on lung cancer research but that's no longer the case. There's a global race in lung cancer research as so many people in the world develop it annually. Every treatment type has changed in the last few years and more new treatments introduced than for other cancer types and for lung cancer than in previous decades. So many aspects are being researched but results not published until they've completed which can take years.
Advances in technology, genome sequencing, targeted agents, different surgeries including robotic, changes to radiotherapy, chemotherapy and immunotherapy have all changed the treatment landscape. Unless involved, we don't know this - nor does the general public nor many medics unless they specialise in this area.
I have met so many people with lung cancer who've survived longer than suggested d or what I'd believed from Google - one is over 33 years since diagnosis and found them inspiring. I didn't think I'd be working, swimming and active based on what I'd read. Not much is publicised about survivorship yet there are many of us. Getting on with life is so important. Having lost 2 sisters and a niece unexpectedly and prematurely - none from cancer - I value every day.
I'm all for learning about any condition we develop, but it's important to use accurate updated information written for a 'lay' audience rather than scientific papers written for a different intention. That's why I suggest people explore the Roy Castle lung cancer foundation website as it's a wealth of information on so many aspects.
Good luck with the pets, activity and getting on with life.
Sorry to hear that a nodule has returned on your scan. That must be worrying for you, particularly so close to your previous surgery. Although nodules can be cancerous, they can also be caused by infection or inflammation, so it is common for a “wait and watch” approach before considering treatment plan options. Your Oncology team will discuss this with you and you can consider all options for an informed choice. Good advice to keep active and as fit as possible, The information booklet, living with cancer gives good advice on how to look after yourself:roycastle.org/app/uploads/2...
I hope some of this is helpful but if there is anything else you would like to discuss 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 0900-1700 and Friday 0900-1600
I was told two weeks ago that I have a new nodule (5mm) on my lower left lung, 20 months after a lobectomy for an adenocarcinoma pT1 minimally invasive NO M0 pl0 R0. I had been told that my risks of recurrence was less than 5% ! I insisted that I was scarred because the mutation is a bad one Kras g12 V so more likely to come back and no targeted therapy et … Everybody told me to relax and go home with no adjuvant therapy. Now they don’t know if it is a recurrence/ second primary or something else. I am told to wait for another scan in 6 weeks to see how it grows. How can I wait 6 weeks ? I am so depressed looking at the prognosis for recurrence …. I saw your post 5 months ago and I hope you are OK and that it was not a recurrence.
Hello Sylvie, thanks for contacting me. My update is,after antibiotics and wait and see, my last scan came back clear. This was a wonderful feeling but I’m aware that the wait is horrendous. In my case 4months. It’s worth reading Janette’s reply to me above.She is a very well informed lady with sound advice. Another,interesting site to join is an American site called Inspire. The information on this site is very useful. I know information does not calm the stress but I send you my very best wishes for a good outcome.
I am glad your CT scan is clear. This is great news ! Do you know how they made the decision to give you antibiotics ? Did you remember having a cough or the flu or anything (in blood test) that would tell them this could be the reason for the nodule ? I have not been ill and don’t cough and my blood test are 100% normal (although they are just the very basic blood tests not even looking for cancer markers like calcium).
I might suggest antibiotics to the respiratory consultant that agreed to see me before my next scan to reply to more questions.
Are you seen by an oncologist or a respiratory consultant ? I only saw an oncologist once after my operation only because I insisted in order to ask questions such as my mutation and the consequences of this on the probability of recurrence. She told I was worrying for nothing and told me that I only had < 5 % of recurrence and that the mutation was not affecting this for Stage 1 patients (contrary to what I have read in many medical publications) and that I would be their success story and that she was so happy as this does not happen often to catch a LC early enough etc…. The respiratory consultant had the same speech 1 year ago telling me to accept I was very much likely to be “cured” and stop worrying about recurrence…. His speech is different now and only focus on the size making too early to biopsy and that we need to wait for it to grow (or not). I obviously hate this idea as it could also be steading in other parts as we wait etc…
I am also on the Inspire forum but it looks that American are more advanced than the UK at least NHS UK and do things a bit differently.
My Oncologist is also my Pneumologue. I wasn’t ill when the antibiotics were given. He wanted to check if the nodule on the right side was due to an infection before I started chemotherapy. It disappeared after the antibiotics bur reappeared after the chemotherapy. After a further four month wait it had disappeared again. He explained that we have nodules for all sorts of reasons and he was just being prudent. I have my next scan in April and pray it stays away. I wish you all the very best with your treatment.
Thank you for your email. For the moment I will have to wait until the next scan but I am a very anxious and depressed person. I have to try to keep busy… Good luck ! Thank you. Sylvie
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