Hello! I’m someone who 10 months ago was told they had suspected lung cancer and it’s been a rollercoaster of mixed emotions not just because of the potential diagnosis but other stuff going on in my life.
The lung nodule was found accidentally after a scan for something else, this then triggered a referral to a special clinic, then came CT Scans, PET-CT Scans, and a first attempt at a Bronchoscopy, under sedation but they couldn’t reach the nodule. As time went on the nodule grew, on CT Scans. Opted for a three month surveillance after first Bronchoscopy.
Then I had a CT Guided Lung Biopsy, but they only got a small sample, and that was benign, but I am now led to believe they don’t believe they reached the nodule. There was mention of a Lobectomy, which I decided against, and went for another three month surveillance.
This then led to a follow up CT, another PET-CT, and I also had a ION Robotic Bronchoscopy under a general anaesthetic, first ever GA for me, which was worrying but led to believe this was the ultimate procedure to reach the nodule, complete fail, despite two CT Scans under the GA, apparently due to Atelectasis they couldn’t reach the nodule.
All three PET-CT Scans didn’t have any FDG uptake, which is excellent, but due to the shape of the nodule, spiky they say they still suspect cancer. The nodule also developed a cavity four months ago, but size wise has not grown anymore.
Most recent talk was about a Lobectomy again, which I don’t feel is necessary given no FDG uptake on the PET-CT Scans, also mentioned trying for another sample via a CT Guided Biopsy, but due to my anxiety is why I feel it failed last time, as I was extremely anxious towards the end of the procedure and struggled to control my breath, when the radiologist was attempting to get samples.
Now opted to repeat CT Scan in six months, but should it be so difficult to get a sample, is there a reason why a Segmentectomy is not suggested to remove the nodule, rather than a drastic Lobectomy?
Does getting definitive answers take this long, or is this usual.
I’m late 40’s and a non-smoker. 😀
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LittleRedSquirrel
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Good Morning,The first part of your story sounds identical to mine! But after a failed guided CT biopsy the second I had with a valium, which really helped me relax and they managed to get the sample they needed. Please have a go as it was so worth it for me.
Sorry to hear all of that. It’s a worrying time, and the options can seem overwhelming.
I have a similar diagnostic story - non-smoker, just turned 50 at the time and the lung module was found whilst doing a scan on my thymus gland (I also have myasthenia). My tumour was growing, and my options were a lobectomy (right upper) or chemo. The lobectomy was the recommended route, I took it, and I have no regrets whatsoever. The first few weeks were tough - really just being out of breath - but within a couple of months my life was pretty much back to normal. After about four months, I would say that it was completely back to normal.
My biopsy showed a positive result for an EGFR defect (Exon 20 L858 mutation), which is the cause. They got the tumour out at 2.9 cm, and so far it hasn’t come back, though longer term it’s odds on that it will.
If it’s the thought of the operation and recovery that’s troubling you, it’s completely understandable. It’s far from routine, but common and usually very successful. Your lungs expand to fill the space - my lung capacity after 12 months was very close to where it was originally - and I have had no other side effects other than some slight numbness in my side where they had to cut through a nerve. A very small price to pay!
If they recommended a lobectomy, I would take it. I will probably need another when my cancer eventually comes back, and I won’t hesitate to take them up on the offer.
I am sorry to hear about your suspected cancer, and the difficulties you have had getting definitive answers. This will be a difficult time for you. Support is available and it is good that you have reached out. You have already had a couple of people sharing their experiences which might be helpful for you.
I can understand your reluctance to repeat the biopsy in light of the recent failures. As MiniDini1964 suggested, there is an option to have some sedation prior to the procedure. The medical team will be keen to get definitive answers too and to stage and match any potential cancer as that can often guide their treatments.
It is often hard to know which is the best option to take at this stage, so gather as much information as possible to make an informed choice. You could call our free nurse led phone line to discuss the options. You medical team will keep you under close surveillance meantime and it is important to keep communication open with them, as they will be in the best position to guide your choices.
You might find this link to the information on managing your lung cancer diagnosis helpful. P49 has suggestions on what to ask your medical team.
Here is information on surgery which might help you consider this as an option: roycastle.org/wp-content/up... Nick_Ed has shared his experience which I'm sure is beneficial.
All of our information booklets can be found here: roycastle.org/our-support/l... These include information on diagnosis, treatments and symptom management.
We have a range of support services, from one-to-one support to online support groups through zoom , if you are interested in any of these you can register through this link:
Alternatively you can email our support coordinator Ellen Knapp at ellen.knapp@roycastle.org
Having investigations for cancer can be quite isolating so please reach out if you feel the need.
The Maggie’s centres are a great place to have a cuppa and a chat, they provide practical and emotional support, including benefits advisors: maggies.org/
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
it can be a long and tough road to diagnosis and treatment as well as those on a surveillance pathway (watch and wait) which it sounds as if you are. The main point of why it is so difficult is that the lungs are not easy to biopsy - unlike other organs, it isn't a matter of simply poking a needle into something and damage to lungs is best avoided! Many many people have lung nodules - like moles on the skin - most turn out to be benign as it has been suggested yours is. spiky (I suspect 'spiculated') may or may not turn out to be something that grows whether benign or malignant and if they simply offer to remove parts of people's lungs who have no symptoms for nodules that may well not develop into anything, that would be seen as negligence and harmful. That's why the BTS guidelines are quite strict about when and how to follow up the nodules now being found frequently on lung health checks or incidental findings from other investigations.
I was 52 when a 'lesion' showed on my chest x-ray taken when I took myself off to A&E after strange symptoms for me - but not typical symptoms for lung cancer. I was admitted the next day and kept in for a week and misdiagnosed as uncontrolled asthma. As my breathing wouldn't recover enough to be discharged, I was given more and more steroids/nebulisers/inhalers and a CT booked for about 10 days later. unfortunately the scanner broke down and parts had to be ordered so it took weeks to get a CT scan then results showed a 'large mass' so sent for a PET scan and within days, despite an appointment for me to see a consultant about 2 weeks later was phoned to visit another hospital to see him first thing the next morning. I was told the 'large mass' in my upper left lobe needed removing whatever it was - it would be sent away to pathology to determine what it was and any further treatment as it would be removed with the upper left lobe of my lung (half my left lung). This was done and I then had to wait for a month for the results so in January 2011 I learnt it was lung cancer and a 7cm adenocarcinoma had been removed. I was a never smoker.
I've been involved in lung cancer research for many years (since 2013) and things have changed beyond recognition in diagnostics, screening and treatment since then. For example the majority of lung surgery now is keyhole not the open surgery I had, the average length of stay for the operation is only a few days not the 6 I spent in hospital. the risks of infection are lower and recovery quicker. I was back at work and swimming 3 months after my op and thankful for every day.
Lobectomy is the approved standard for NICE/lung cancer pathway guidelines in the UK but there are some centres that do wedge resection and segmentectomy as they do in other countries but these are not the norm. The BTS guidelines work on 'volume doubling' time and set clear follow up guidelines for surveillance/action so when looking online/googling or researching other patient stories, it's easy to pick up what happens in other countries which may not always be as relevant to the NHS. Some other countries (notably in SE Asia) offer lung screening and there are research studies exploring whether some in their populations may be 'over-treated' - i.e. removing part of the lung when there is no need. Surgical trials are often very hard to carry out as most patients want the entire tumour with good margins removed and currently the UK guidelines state this is best done with a lobectomy so hope this explains the reason. The Society of cardiothoracic surgeons is currently setting up a research priority partnership to explore the priorities for surgical research in future as variance in treatment and follow up can be quite wide currently.
As others have suggested, you could request sedation or medication to relax you for the biopsy if that remains an issue - as you recognise breathlessness can have many causes, anxiety, infection, allergies, heart as well as lung issues so maybe try some breathing exercises too as that can help relax you in medical and other settings. good luck.
Sedation is very helpful to manage anxiety. It’s worth discussing this in advance. If you decide to have any more interventions.
It’s also important that you are aware that never and non smokers can get lung cancer, which not everyone is aware of. I am a never smoker and was surprised to be diagnosed with lung cancer at 49. Since being diagnosed I have met people from age 17 upwards who have been diagnosed. It’s just worth being aware that if you are perceiving lung cancer to only affect older people who have smoked, then this is not the case. I wouldn’t let this perception affect your decision making.
Thank you all for your really helpful, and thoughtful replies, you are amazing!
My nodule was found after a scan (MRCP) for my gallbladder was done at this hospital I am under, I was referred there because my own hospital refused to remove my gallbladder due to high BMI, I had a 10-month wait, met a wonderful surgeon who had no qualms about doing a cholecystectomy, and did the scan to check no gallstones in the bile duct, which I’d had before… And the nodule was found, and the rest is history! And of course the cholecystectomy was put on hold!
I am currently under Wythenshawe Hospital which does have an excellent reputation for their lung cancer services. The only downside is it’s not local for me so I have struggled with the commute to appointments, and procedures, and I have no-one to accompany me. I’ve also been overwhelmed as a carer for an housebound parent for the last 18-months.
The mention of sedation is good, and this was suggested yesterday at the prospect of another CT Guided Biopsy, but for now I have gone with the 6 months surveillance pathway, but I may change my mind. I don’t feel the intravenous sedation given for the first Bronchoscopy, did anything, I remember it will, but I’ve often found these types of meds, to have little effect on me, perhaps due to a higher BMI.
I cannot fault any of the excellent care I’ve had from the hospital, but at times it’s been overwhelming when they are calling multiple times a day with appointments and to book transportation, I’m autistic, so I can get easily overwhelmed, yes, it’s on my health records.
Ironically, one of my friends, an elderly lady who I was initially talking to about my issues from the start, has since been diagnosed with terminal lung cancer and has been given 12-months, smoker, her PET-CT Scan lit up, her biopsy showed a malignancy, and she’s just done her third week of chemotherapy at Christie’s. She’s remaining so positive and wants 2 years not 12 months.
I’ve done a lot of reading and research on this, over months, and I’d probably gone for the Lobectomy had I been alone, and didn’t have the caring responsibilities I do, I know I should put myself first, but I can’t, lifelong issue.
Those of you who have had this surgery, how long were you in hospital for? Again I struggle with hospital environments due to sensory overload, and despite it being advised I should stay overnight after the procedures I’ve had as I live alone, I’ve discharged myself and gone home, and been fine.
I shall go over my letters, records, and come back to you with some measurements of the nodule, and the volume doubling time, see what you think!
Whilst I have said six months, I know I can contact the team anytime to discuss my options.
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Hi.
A 7cm mas was found in my right lung on an xray 3 weeks ago today (9th July). 
Waiting for results of Lung Biopsy - Scared!
Pet Scan results finally back
Lung Surgery Cancelled Twice
