We are in Limbo

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My husband was diagnosed with Lung cancer 8 weeks ago. Also a cancer around the lymph gland which presses on his oesophagus and aorta.  A bit of an anomaly apparently as they both sit outside the Lung and GI.  So bounced from GI to Lung.  Biopsies done.  Lung don’t think the Lung cancer is primary and GI do t think it’s theirs.  So PET CT last week pulmonary function test this week and 3 weeks on a brain scan still outstanding. We feel like we’re in Limbo.  With the possibility of being bounced somewhere else. 
How long do people usually wait on average from diagnosis to prognosis/treatment plan.  

Not sure any of this makes sense but just need to reach out xx

  • Hi  and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    I'm sorry to read that you feel you're being pushed from pillar to post and it must be frustrating when you just want a treatment plan in place.

    I noticed that you're also a member of the lung cancer forum so thought I'd suggest that you also post your questions there as you'll then connect directly with others who will have had similar tests and biopsies to your husband and who will probably be able to give you an idea of the timescales involved.

    It would be great if you could put something about your husband's diagnosis and tests to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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  • Hi I am very sorry to read about your husband. My father is in a similar situation. It all began with a CT scan following an abnormal chest x-ray which picked up a pleural effusion mainly on left side around back. They have seen concerning tree branch like nodules in pleura on left lung and sample of fluid was inconclusive bloods all normal but just one swollen adrenal gland. He’s now got to have a VATS biopsy surgery but 2 weeks waiting already and not had even a pre op appointment yet. Losing weight just having 3 slices toast a day. Feels ill worried sick he’ll be too ill soon for op. They too not sure if primary or a secondary lung cancer come from elsewhere. Have you heard anything since about his biopsy surgery? Send my heart felt wishes to you all. It’s incredibly difficult know what you must all be going through 

  • Hi I am very sorry to read about your husband. My father is in a similar situation. It all began with a CT scan following an abnormal chest x-ray which picked up a pleural effusion mainly on left side around back. They have seen concerning tree branch like nodules in pleura on left lung and sample of fluid was inconclusive bloods all normal but just one swollen adrenal gland. He’s now got to have a VATS biopsy surgery for official diagnosis as at moment they have no answers it’s so frustrating, but 2 weeks waiting already and not had even a pre op appointment yet. Losing weight just having 3 slices toast a day. Feels ill worried sick he’ll be too ill soon for op. They too not sure if primary or a secondary lung cancer come from elsewhere. Have you heard anything since about his biopsy surgery? Send my heart felt wishes to you all. It’s incredibly difficult know what you must all be going through 

  • It’s hard to believe so many people are in such similar situations. I am so sorry you are going through this. 
    we've continued to be passed from pillar to post and now 10weeks since diagnosis still none the wiser as to where the Primary is.  Today we were told that after meeting the Cancer of Unknown Primary team, we are back with Lung.  The biopsies couldn’t identify the primary but are again being sent off today for further specialist  testing.  Pet ct show secondaries now in his spine buttock and ribs.  Stage 4 obviously not the news we wanted.   Meeting the Lung Oncologist hopefully next week but know it’s palliative care probably Chemo.
    We are also being supported to make a formal complaint.
    He has to keep active and make sure nutrition is good.  Lots of protein soft food and fortisip drinks.   
    Speak to The Patient Liaison team they will walk with you to try and find a way through the maze.  It’s the only way change can be achieved these days. 
    Take care and big hugs to you all x