hi, I had a mediastenoscopy about 4 weeks ago where they biopsied lymph nodes. These came out clear which was a big relief. Other people have referred to EBUS or variations of this - but these were not discussed in my case so was not offered an alternative. I obviously would have preferred a less invasive procedure or at least a reason why these may not be appropriate in my case. Is it usual to have options discussed in your experience?
I’ve just had consultation where it was confirmed I’d have a lobectomy (right side upper). This is fine and pleased I can have surgery but no explanation given on why this rather than segment- 3.3cm tumor. Again meeting was with trainee - not seen the consultant yet. no overall treatment plan discussed and was told not possible to stage the cancer until after surgery. I’ve worked it out roughly and understand that things can change once they get inside. Find lack of information and explanation really frustrating. Told date for surgery “could be 4 weeks or could be longer” . That will be 8 weeks from lymph node biopsy- is this common and how do I speed things up? Now been 9 months from GP visit!
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Hi there, that does seem like a very long time they do have a protocol on times and if you are only seeing a trainee too, I would request a follow up (it’s great for trainees but I thought that they normally shadow) or you can contact your Patient Liason Service at the hospital to help. Best of luck to you. X
Hi, From having a chest x-ray which showed a mass in my chest to having a lobectomy, lower left lobe, was 11 weeks to the day. For some reason I raced through the system at diagnosis my tumour was stage 2A size 4.1cm but when removed it had grown to 6cm. Now having adjuvant chemo as the cancer has all been taken away and it had not spread to the lymph nodes or anywhere else in my body, so this chemo is just "belt and braces" in case there are any microscopic cells floating around. Hope that you get sorted soon.
Sorry to read of your frustration and delays - the type of biopsy method is usually based on the location of the tumour. Removing a whole lobe is the gold standard in line with BTS guidelines and NICE guidelines. segments/wedge resections are sometimes used (occasionally) if somebody's lung function is severely impaired already (e.g. COPD or similar) and removing a whole lobe would mean their breathing function would be too limited.... it's good news that you're eligible for surgery - and the majority of UK patients are now operated on using VATS (minimally invasive/keyhole) rather than the open thoracotomy I had to remove my 7cm tumour in Dec 2010 when VATS was not around.
I was told that whatever mine was it had to come out with the upper lobe - in the left lung which has only 2 lobes compared to the right lung's3, this meant half my lung removed and sent away to pathology to determine what it was and any follow on treatment. It turned out to be a type of non small cell lung cancer - mucinous adenocarcinoma but told the specific type I had didn't respond to chemotherapy so wasn't offered it - my follow on treatment was active surveillance (watch and wait). I was back at work and swimming by the end of March 2011. It took almost a month after my surgery to be given the results on 13/1/11. It took just over 2 months from having had my 'large mass' detected on chest x-ray in A&E to having treatment and with covid and backlog, things are worse in some areas than others due to staff/resource/pathology/ theatre pressures
thanks for responding, this is very encouraging. Pleased to hear that you are doing well and back to fitness as I was concerned about how long I would be out of action as well as the longer term effects of the surgery/any follow up treatment.
Sorry to hear you have lung cancer and it is understandable your frustration at the process and length of time. There is not much to add to what JanetteR57 has answered so well, and I have placed some links below that provide both information and support.
It is encouraging that you have been offered surgery and hope this goes well for you, this is a direct link to our booklet on lung surgery: roycastle.org/app/uploads/2...
You may wish to consider calling the hospital switchboard and ask to speak to the oncologist /surgeons secretary for a date for your lung surgery.
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: roycastle.org/help-and-supp...
We offer a one off grant of up to £150 for anyone with lung cancer and you can apply for this through this link: roycastle.org/patient-grant...
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
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