I was diagnosed with adenocarcinoma in my right lung in June 2019 and had a thoracotomy to remove it ( a 10cm tumour) and the right lower lobe in July. Things only got complicated after the surgery.
First I had a post-op pneumonia then a “collection of infection “ in the pleural space and an air leak from the bronchial stump on to that space.
For this I had a drain inserted under CT guidance in September....... I still have the drain and the air leak ..
Due to these complications I have not been able to have the chemo that was highly recommended as I have gone well beyond the window of best benefit.
So far all other tests were clear and latest scans show no return of the cancer.
As and when the drain is removed, apparently I am then monitored by the respiratory physicians for the next few years. I guess my main worry is how likely am I to have a recurrence and where will it go - I don’t trust this beast - it won’t be stupid enough to show up in the same place twice surely....... when the chemo was first discussed it was a “ must have due to the likelihood of a recurrence “
I guess I’m feeling a tad confused.
The team that have looked after me from the surgical side have been absolutely fantastic- it’s when they have finished with me that worries me.
Written by
Jestermoment
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Welcome to the forum and so sorry to hear you have had some complications from your surgery. It sounds like you have had excellent care and it is understandable that you are concerned on the wait you have had to start your chemotherapy.
Chemotherapy can be started 2- 6 weeks post surgery, however it is well recognised that for some it may be longer due to potential complications.
It is encouraging that your latest scan has been good. You may wish to discuss with either the lung cancer nurse specialist or Oncologist what the likely plan will be after the drain is removed.
Priority for yourself at the moment is perhaps recovering from everything that has happened to you including your surgery; for some people it can take up to 12 weeks to fully recover from lung surgery.
If you have not read our booklet on surgery and after care you may find this of interest in this link: roycastle.org/app/uploads/2...
You may find our booklet 'Living with lung cancer' useful in your recovery and assist you in getting fitter for your chemotherapy, this is the link: roycastle.org/app/uploads/2...
If you wish to discuss anything you can either email us at lungcancerhelp@roycastle.org or call the Freephone nurse led helpline number on 0800 358 7200
Sorry to read of your difficulties after your surgery. I had a left upper lobectomy in Dec 2010 (also thoracotomy as keyhole surgery was in its infancy) to remove a 7cm tumour diagnosed as mucinous BAC (adenocarcinoma) in Jan 2011. I was told that for my specific type of cancer there was no evidence that chemotherapy had any effect so my follow on treatment was 'observation/vigilance/watchful waiting' with regular (quickly went into annual check ups). I've had several respiratory 'flares' in the years since including pneumonia, healthcare acquired infection pseudomonas and last year isolated with a respiratory virus. Currently recovering from a chest infection (thankfully not hospitalised with it) but just wanted to make the point that if we had chest infections beforehand, we may well still be susceptible to them afterwards and if we didn't, then removing part of the major respiratory organs may make us take longer to recover. I've met many patients who've survived much longer than me - surgery usually means it's been found whilst it has not spread so I feel lucky to have had my treatment. Keeping active and trying to develop the lungs (when you're feeling better) will be key to improving your overall health. I continued to see the surgeon (or registrars) in my follow ups but when I had a flare up was referred to respiratory consultant but my overall care relating to the cancer follow up was with my initial team. Not everyone's spreads - many people have local or regional disease that can be contained and treated successfully and systemic anti cancer treatments like chemotherapy and more conventional radiotherapy bombard the entire body with their 'agents' often causing side or late effects of the treatment to live with afterwards as well. . Personally I found a couple of books 'anti cancer a new way of life by Dr Servan Schreiber and 'cancer is a word not a sentence' by Dr Rob Buckman helped me reduce anxiety and take actions to lead a more balanced life in terms of diet, activity, sleep, work/life balance etc. I appreciate anxiety of recurrence is always there but have to learn to not have it front of mind. It was 9 years ago last week since my diagnosis and if I'd spent those years constantly anxious, think it a waste of a 'second opportunity at life'. Congratulations on your surgery in the first place, great news that no evidence of development, and take results one step at a time - as you progress to 3 monthly, 6 monthly and then annual checks. My respiratory physician works closely with the surgical team (which in my case is in another hospital so it is a visiting surgeon who comes to the district general hospital) but over the years, I've learnt to trust that they are all specialists in their own right working together to look after patients with different specialisms dipping in at different times (as with oncology/radiotherapists/immunologists). If you're interested in learning more about the types, treatments and living with... aspects, there's good information on Roy Castle lung cancer foundation website that can help inform and also highlights questions to ask your medical team. good luck..
Hi janette R57 and Thank you so much for such a comprehensive reply! It is the reassurance from people like you that is priceless - it is wonderful to read your story and it gives clear indication that a positive attitude and trust in the team is key. As I said, the surgical team have been fantastic way beyond their normal time frame for the surgery. The day will come when the drain is removed and then I can concentrate on a full recovery.
I will follow up your suggestions as well - would love to return to a good relationship with food and eating being a priority.
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