Lung Surgery Cancelled Twice

[Domino13]

After an incidental find of a 19mm lung nodule and a clear PET scan in late October my respiratory consultant was sure it was a slow growing cancer caught early and recommended, which was agreed by me, that rather than a biopsy I go straight to surgery for a lung wedge resection to remove the nodule which would then be biopsied. I saw the surgeon at the beginning of December who agreed with the consultant and after having had all the pre op tests I was put on his waiting list for surgery which he said would be some time after Xmas. I received an admission date for early Jan 2023 but just before I was due to be taken for surgery I was told the operation had to be cancelled due to no beds being available in HDU and that I would receive another date in a couple of weeks time. The 2nd date was received for the end of Jan, but I was contacted a couple of days before to be told that it had been cancelled again due to no anathetist being available on the day and that I would be contacted the following week, which up to yet has not happened. I know there is a current crisis in the NHS with staff shortages, etc, but surely cancer services should be a priority. I now feel very concerned that I don't have a diagnosis and that the suspected cancer could be growing and spreading and may require bigger surgery or even become inoperable. Has anyone got any advice on what I can do about this awful situation.

[Jules_58]

hi Domino13

I know it doesn’t help but I’ve got reoccurring Lung cancer and have been waiting 4 months now for treatment x

And I’ve had to stop work because my breathlessness and energy are getting really bad, I’m worried it’ll be to late to do anything soon,

It’s a matter of grin and bear it ! My GP said he’s going to write a letter but I’m not sure it’ll do anything xxx keep on going, chin up xxx

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Domino13

So very sorry to hear that your operation has been cancelled twice and it is understandable that this is causing even more anxiety for you. I assume the nodule is in a difficult place within the lung to access for biopsy.

You could contact the surgeons secretary via the hospital switchboard to ask if a date has been given and that you will take any appointment at short notice, also discuss with the lung cancer nurse specialist.

It may be due to your PET scan being clear, which is encouraging, and there is no confirmed diagnosis; the way the NHS system works, those with confirmed diagnosis may be taken as priority, however, being cancelled twice is certainly a priority for yourself as you have the increased worry with the wait.

You could contact the PALS service at the hospital, they are the patient and advisory liaison service, they offer advice and support for any health care services within the hospital: nhs.uk/nhs-services/hospita...

You can call the hospital you will be attending to ask to speak to a member of PALS.

Alternatively you could discuss this with your GP. I have placed two links to our information booklets, one is 'managing a lung cancer diagnosis' if that is what you have and the other is our surgery booklet:

roycastle.org/app/uploads/2...

and

roycastle.org/app/uploads/2...

You are welcome to contact us if you would like to discuss anything, our ask the nurse helpline is 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, or you can email us at [e-mail]

Hope you receive a date soon.

Kind regards

The Roy Castle Support Team

[Daisybarnes]

Hi thereI know how frustrating that is as my "within 3 weeks" lobectomy was 13 weeks later. My respiratory team were very understanding about my worries that it could be growing and arranged another CT scan to be sure all was the same. That was enormously reassuring.

I really hope your op is over and done with very soon and that you can get on with a good and speedy recovery.

Wishing you all the best

[JanetteR57]

It's frustrating and worrying when these things happen - unfortunately the NHS in many places was already stretched before the pandemic and now many staff are burnt out or their immune systems compromised so picking up bugs they may have previously resisted. Unfortunately when they're part of a surgical or other essential team, this can knock onto patient care as you've now experienced twice.

I know telling you not to worry won't help as our minds go into negative spiral and anxiety at such times anyway. My own 'mass' was detected mid October on a chest x-ray in A&E where I'd taken myself off to with strange symptoms for me but I was sent home with antibiotics and steroids. The next day I was readmitted as in addition to previous symptoms and after 2 full days meds, I now had a swelling on my neck on the same side as the 'lesion'. I was kept in for a week and misdiagnosed as 'uncontrolled asthma' not responding to the asthma medication to recover my breathing sufficiently to be discharged. Within that week my cough became much worse so the CT scan I'd been promised didn't happen and they told me I'd be invited when everything in my system had calmed down sufficiently for me to lie still in the scanner. However when the time came 2 weeks later I was phoned by the hospital saying the scanner had broken down and parts had to be ordered. I was extremely anxious and asked if I could have the CT scan on the other site (it's a split site District general hospital) so I was told to phone the secretary who told me only the consultant could rearrange the appointment and he had just gone on a fortnight's holiday'. Eventually I had my scan then called in for results and told the 'white mark' on the image shouldn't be there and was cancer - lung cancer. When I asked how when I'd never smoked she told me it might not be, she couldn't interpret the scan. She advised my case would be passed to the multidisciplinary team meeting in 2 days time and I'd hear back. 2 days later I was phoned by another hospital to go for a PET scan the next day, Friday. On the Saturday a letter arrived inviting me for an appointment with a thoracic surgeon about 2 weeks later. However only a few days after the PET scan I was phoned by the surgeon's secretary to go in first thing the next morning which I did and he told me the large mass had to be removed with half my left lung. He'd advised the theatres were full and I'd be put on a waiting list reduction initiative as I was fit and healthy. When he learnt it had been 2 months since my A&E visit he was shocked as he only knew about the PET scan results not all the delays beforehand at the other hospital. I didn't have a biopsy as told they wouldn't waste time as it clearly showed on x-ray, CT and PET scan and would be sent to pathology after resection. I had the surgery 16/12 and 13/1 told they had removed a 7cm tumour - adenocarcinoma. I was told it had likely taken a long time to reach that size yet like you, my imagination had thought every second/minute/hour it must be increasing which isn't the case. That was end of 2010, early 2011 so waiting isn't new.

Due to lung screening and more frequent use of CT scans when investigating other issues, it's now possible to detect many patients like you at much earlier stages when lesions are still millimetres. On the other hand lack of access to GPs has resulted in more detected at later stage or when the tumours may be larger and may move from being operable to non operable. The back up of patients and competition for the same resources in lung cancer and Covid has not helped but clinics are supposed to prioritise patients by clinical need. Lung surgery requires an ICU bed for recovery and this area is often the most pressured even if other aspects are in place.

You could contact the consultant's secretary and ask what assurance you'll be offered it won't be cancelled a third time and cite the impact on your anxiety/mental health, although they're no doubt aware of that when trying to juggle too many patients into the system.

I've been involved as an NHS board member from 2006-2021 and part of cancer research since end 2013. All committees locally and nationally have prioritised cancer as much as they could.

Unfortunately many other conditions have fared less well - long term conditions like asthma, diabetes, heart conditions whose routine monitoring and follow up just haven't happened as they should. Many are off work on long term sick due to such backlogs so prioritising people who've waited years and months must be frustrating for all concerned.

It's going to take a lot to recover services so patients like you can receive the treatment they need.

Hang on in there... try and distract yourself if you can from stressing on something that's out of your hands. Hoping it gets reorganised soon...so you can get on with recovery and the rest of your life. good luck.

[Domino13]

Thank you all for your helpful relies. I will give it to the end of the week and if I haven't heard anything will ring the surgeon's secretary for an update. I will also ring the respiratory nurse to discuss the situation with her. I don't blame the surgeon or his staff who are probably as frustrated as I am but it is doing nothing for my mental health at the moment and staying positive is very hard. Hopefully will hear something soon. 🤞

[Ianhick]

I think your best bet is to contact PALS at the hospital where the surgery will take place. I had a 7.8 cm mass removed during a right top lobectomy thankfully it was benign, but due to its size and still growing, surgery was a must. I was treated quickly following all the tests. However during my PET scan, a suspected issue with my vocal cords was identified. Because of the urgency the tumour required, this was put on hold till later. The lung cancer specialist nurses had tried several times to chase my referral, following my surgery, without success. So I contacted PALS and within a week, I'd got an appointment with a consultant and had a camera inspection of my vocal cords. Thankfully everything was clear. But the point I'm making is that contacting PALS expedited my appointment, which is what you need.

[Bibicata]

Hello Domino,

I had the same problem (1.2cm nodule in lower lobe right lung). The nodule was found by accident in January 22 and the biopsy did not work and the pet scan was negative/ very faint. They also found that this nodule was already showing 3 years earlier in a CT scan but it had been missed.

The risk of it being cancerous on the herder score was below 15%.

They were going to make me wait until the end of May and maybe longer as I was not a priority as I was not yet diagnosed with cancer and the nodule was small. I complained to PALS and used NICE rules to make them hurry up. The operation was finally done earlier at the end of April. It was a cancer and I am glad I had not waited longer. It was an adenocarcinoma stage 1 and any delay just increase the risk of it affecting the lymph nodes or getting into the pleura (if near it).

I hope that in your case it won’t be a cancer but it worth insisting in writing that you should not have to wait so long when waiting for a diagnosis of suspected cancer.

They had also omitted to tell me that I had another small nodule in another lobe but it didn’t not look that bad and they thought it could be benign so they just ignored it . In my last scan 6 months after my lobectomy it had grown a bit but it too small to be biopsied and for a PET scan so I will have to wait until the next scan to see….

It is so difficult not to know and having to wait. I hope you get your operation soon and I wish you all the best.