New here now facing pneumonectomy 15 years after lobectomy

Sorry to hear , iv had surgery twice in lung but it was lobectomy couple Yr ago then wedge resection. My oxygen levels where still same , I had keyhole with lobectomy 2nd tine was open  surgery so wee bit longer recovery. Tracy

Thanks Tracy,  My lobectomy was open but the two tumours they need to deal with now are quite a bit apart so I think it may have to be the whole of the remaining left lung.  My lung function now is v good. Techniques have improved quite a bit since 15 years ago so maybe they try some resections?? All a bit up in the air.  Thanks for your help, take care. Richard

Hi Richard ,I did not realise you were now facing more surgery ,there really is not much i can say to you to give advice to you like you have with me ,but just to let you know i will be here if you need to talk ,one good thing i do think things have improved in the 15 years since you had your lobectomy .It is totally understandable you feeling tearful and anxiouse as you have already faced this once already .keep in touch and let us all know how you get on  Christie

Yes, I had a bit of a cough a few months ago - my (locus) GP said he didn't want tp "waste NHS resources on an x-ray" so I paid for a private scan. It showed tow separate and apparently new small tumours.  Biopsy showed adenocarcinoma and my lung function turns out to be pretty good. So, they're doing one final mai head to check no small secondaries - then I talk with the surgeons and will accept whatever is offered. I think it might be a left pneumonectomy (I was a GP myself many years ago and have since run a team researching lung cancer. At least this was found v early 1-2cms in size each of them.  I'm a load better than the last time. I've discovered the trick is to get your head into a goodish place and then run with things. I have had a very good last 15 years though. I hope I didn't upset you mentioning this now.  Take care. Richard

Hi Richard ,you did not upset me ,a little worried maybe that it does not always stay away ,but at the moment i get stressed out everytime i go for a check up ,my nodule started at 9mm then increased to 18mm in a year so i know i took the right decision and so did my surgeon ,she also told me that only 20% of the nodule was cancerous and that it had not spread ,so 1-2 cm is still very small ,and your right the trick is to get your head around what is going to happen ,i just kept saying things will be better tomorrow ,tomorrow i take another step closer to getting better ,you to take care and let us all know how you get on

Hi Richard

hope you don’t mind me joining in but just wanted to say I’m appalled your GP wouldn’t refer you for an X-ray with your previous medical history. Thank goodness you were your own advocate and had a private scan. I have nsclc adenocarcinoma in rt lung. Was booked in for RATS surgery almost 2 years ago which was cancelled at the very last minute as the surgeon had run out of time. Think it was divine intervention as when I was called back almost 2 months later (Christmas got in the way) I was re scanned and told I’d probably lose the whole of my rt lung rather than the original plan to take the lower lobe. This totally freaked me out as I already had mild copd and could’ve been left with long term breathing problems and unable to fly long haul to see my beloved family in Australia. Radiotherapy was on offer as an alternative to surgery so I opted for 5 sessions of SABR and 15 sessions of radical radiotherapy. So glad I didn’t have surgery as radiotherapy shrunk the tumours leaving scar tissue but there’s always that niggling doubt if I made the right decision. Time will tell. Whatever you decide to do please let us all know how you get on and hope it all goes smoothly with a good recovery. 

Hi Dani and thanks for jumping in.  I have an MRI tthis coming monday then, assuming?? they don't find any secondaries there, I will sometime get an appointment to talk to surgeons about what's possible. Interesting to hear your experience of SABR.

It has been scary reading about some of the really gross mismanagement tales.  I used to be a GP (about 100 years ago) before going into research, including into small cell (oats) cancer. Delays in diagnosis and treatment made some patients get seen and treated so late their survival was down to weeks.

I think, at least in the this neck of the woods, primary care is dying and quite fast. Let's see what happens with getting seen and hopefully treated at the Bristol Royal Infirmary.

All the best, Richard

Hi Richard 

You have hit the nail on the head.

Exactly the head is the toughest part of a cancer diagnosis.

My bowel investigations caused me tremendous stress and anxiety, waiting for a treatment plan I imagined the cancer spreading all over the place  

I listened to apps which helped my anxiety and gave me head space 

It may be worth raising your concerns about the lack of care shown to you by your GP.

The fact you are a doctor should give you right of passage. You know what you’re talking about.

I wonder how many patients he’s refused investigations to? 

You were only asking for an x-ray which they’d give you for a broken finger  

Well done for getting the scan. I would have done the same if I were you

Take care 

Thanks Artsie, I'm not sure complaing would help. I really need to concentrate on getting to talk with and agree on the next step with surgeons at BRI. My head is in a far better place than it was when I first went through this 15 years ago.  I guess it's an age / experience thing. I've had a great 15 years and we'll see what ever comes, comes. Regards, Richard

I agree save your energy., and concentrate on the treatment plan. 
fifteen years cancer free is amazing.

I didn’t get a year and the Ghoul poped up on my lungs. 
I felt anger and still do. 
Two primaries in two years