Biopsy wait times

[Vhunter60]

Hi all, my dad was diagnosed with lung cancer last week and understandably we are all devastated. He has not been well since Oct. X-ray in Dec and CT scan on 3rd Jan. He now has to go for a biopsy and the GP informed him the appointment could take up to 4 weeks. He called the appointment line today and was told it will take 10 weeks for the biopsy. Surely that is not right? He lives in NI. He is going to call his GP on Monday but just checking if that is the current, normal wait times, which is absolutely ridiculous. If that is the case, has anyone gone privately for the biopsy, to speed things up? Is that even possible? Thank you.

[Elt79]

Gosh that seems a long time thinking back to my biopsy it took 4 weeks to carry out results were further 2 weeks. It is such a scary time for you all I hope this can be speeded up for you x

[Vhunter60 in reply to Elt79]

Thank you.

[Kazzacrazy]

The longest I had to wait was for the biopsy but it wasn't 10 weeks 😕 is it a biopsy through his back or a bronchoscopy? I was told there are limited specialists to do the back biopsy hence longer waiting times. I asked about private and they said it would probably be just as long, but if it's going to be 10 weeks you have nothing to loose by enquiring. The UK lung cancer group may be able to offer some advice I can send over the link if you'd like to take a look! The waiting is awful I really hope you can get some answers soon.

[Vhunter60 in reply to Kazzacrazy]

Thank you, I would really appreciate the link. I'm not sure what type of biopsy is required. I'll ask.

[Westie88]

Hi, I was told I had cancer on 27th December. I had an EBUS (brondoscopy) on 2nd January but the results were inconclusive. I have a needle lung biopsy next on 25th January. If we get no results from that I've been told its a 1 to 2 month wait for a referral to another hospital where I'll go under general anaesthetic. I think the wait times to be put under general anaesthetic for a procedure are longer and the procedure you can have depends on the locationof the cancer perhaps?. I would investigate going private if you can, in the hope it's quicker for your Dad. I live in Essex but know wait times vary here throughout the country. I hope you get some answers soon, it's awful waiting. Best wishes to you and your Dad x

[Vhunter60 in reply to Westie88]

Thank you, I hope you get some answers soon too.

[JanetteR57]

Sorry to hear of the long wait your dad is being subjected to - I do know that cancer services have taken quite a hit since the pandemic and that Northern Ireland in particular has struggled.

Biopsies are now very important for lung cancer diagnosis as dependent on the results there may be completely different treatments from the more standard chemotherapy/radiotherapy that used to be offered and with more personalised treatments come better results and outcomes usually.

I didn't have a biopsy at all. Back in the October I'd gone to A&E and a chest x-ray showed what they described as a 'lesion' in the top of my left lung but it was ignored. I was discharged but readmitted the next day and misdiagnosed as uncontrolled asthma and kept in for a week. As a younger patient and never smoker, I don't think they ever considered it might be serious and my cough had worsened whilst in hospital so couldn't lie still in a CT scanner. An appointment was booked for a couple of weeks later but then the scanner broke down and needed new parts so altogether I waited almost 5 weeks even for a CT scan, then another 10 days or so for the results then sent for a PET scan then an appointment came through to see a surgeon in a couple of weeks. however a few days after the PET scan I had a phone call from the surgeon who wanted to see me first thing the next day. I looked online and saw that a biopsy was needed so asked him about that and he said, whatever the large mass was in my left lung which clearly showed on all image types, it needed removing, sending away for biopsy to determine what it was and any follow on treatment. I had surgery 16/12 but didn't learn until 13/1 that it had been a 7cm adenocarcinoma - a type of non small cell lung cancer (there are several types and within each type, yet more sub-types and different mutations). I had my diagnosis on 13/1/2011.

Like you and no doubt your dad, my imagination was running riot thinking all these delays would make a worse outcome but consider myself fortunate that the triage doctor at A&E sent me for a chest x-ray (without which I wouldn't be alive) and that the surgeon successfully removed my lung cancer.

Since then the way lung biopsies are obtained has changed - as something called EBUS (electrobronchial ultrasound guided biopsy) is often used - like a bronchoscopy - a tiny camera on the end of a thin tube pushed into the airways/lungs to see if samples can be obtained. Other methods included a needle biopsy into the lung - biopsies carry some risks but the increased number of treatments for which biopsies are essential and increased number of suspected patients have put pressure on the system which already had a shortage of pathologists before the pandemic.

I'm guessing that at the moment, everything is going through his GP and he hasn't yet seen any consultant - that usually happens when they have all the results from the many tests and the multidisciplinary team have discussed the case - so chasing up the GP may help and checking with the hospital to speak to the head of/director of cancer services. hope he gets his tests soon and can get onto a treatment pathway. thinking of you all.

[Vhunter60 in reply to JanetteR57]

Thank you so much for your reply. Really insightful. So glad to hear how fortunate you were with the A&e doctor assessment

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello Vhunter60

So sorry to hear about your Dads lung cancer. This must be a very difficult time for you all. I see you have had good support from previous replies which I’m sure are helpful to you. It is only natural to have concern regarding a ten-week waiting time, as you will be eager to get a treatment plan in place for your father. Although the Health Service does have a priority pathway, waiting times and services do vary in different areas of the UK. Some areas have a pathway navigator who is responsible for tracking appointment timescales. You could consider a private option but as others have suggested, it may not be any quicker. I would discuss your concerns with your GP. If your Dad has been allocated a Lung Cancer Specialist Nurse, she will be able to support, if he hasn't been allocated a nurse yet then you could try this website for services local to you: cancercaremap.org/

The Lung Cancer Uk website may also be helpful in guiding expectation and information on services : Home page | UKLCC

All our information booklets can be found on this link: roycastle.org/help-and-supp...

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 [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

[Vhunter60 in reply to RoyCastleHelpline]

Thank you so much that is really helpful. My dad spoke with his GP this morning and they have organised a private appointment with a consultant next week. Hopefully we can find out more info or progress a biopsy a bit quicker through them. Sad state of affairs in Northern Ireland clearly.