Diagnosed from bone mets, no obvious primary tumor

Hello Ilka,  its so confusing  but firstly a nodule  in the lung can be other  things not  always cancer especially if its not  lighting up on the pet scan.It sounds quite good news but I believe the new regulations say they cannot say cancer without a biopsy to confirm the type. So sit back and relax it may be good news  or I prefer to say better news after the biopsy. Remember a PET scan is electronic and machines like humans can go wrong in your case this is just causing you  stress you don't need . Cancer can be in a bone I believe without a lung source, but I am not a specialist, maybe someone as misintepreted the info. Did your mum have bone swellings or pain? does she have any lung symptoms like cough , sputum , chest pain. I do hope your mum and yourself do not have to endure this fiasco for too long as if the diagnosis is not upsetting enough  they end up with utterly confusing you. I go back to sort out the confusion in my case in January, so fully understand how you are feeling about your mum, my family are not pleased with my outcome I have actually become iller since visiting my local hospital. Every Best wish to you and your mum , you are not alone  with your confusion. 

Thank you so much katiec60!

They did a bone biopsy and say that the cancer cells in the bone came from the lung so now they are scheduling a lung biopsy. But PET didn't show anything lighting up on the lungs!

Bones definitely lit up though and that why I do t understand what's happening.. if it's lung cancer that's tiny/ slow growing in the lung to the point it didn't show up on pet how could it have spread so extensively? And not to any lymph nodes?? 

Hi i am sorry that you have so much uncertainty; no answers but just to share my lung nodules are less than 10mm and they said there is no point doing a PET as they are too small to light up, so am awaiting removal and biopsy over Xmas. No idea if that’s just my hospitals protocol or a general fact though!  Hope there are answers soon for your family

 katiec60 that’s so interesting re the regulations - i had a letter last month saying my diagnosis was lung mets or primary lung cancer but haven’t had a successful biopsy yet; I wasn’t happy they were so definitive (esp as latest CT scan since then has suggested a different cancer option entirely)

Thank you so much! That's consistent with what I read on the web but still not super consistent with the extensive bone mets.. do you mind me asking if you have mets elsewhere beside your lungs? If so did they elaborate on what kind of lung cancer this might be if it's a primary?

I'm really sorry you're in this position too.. we're waiting for a date for the lung biopsy and still hoping for this year. But we also got told that there might be very little genetic material so they are not sure if they will manage to do a full panel for biomarkers

Thank you for message Tangle 123. I am not pleased with my out come  either but accept treatments change  with new discoveries in research. Research drs will try anything if the patient is willing. I am not impressed with  treeatments that are not suitable for the individual patients case we are all unique and no patient with cancer  should be put at risk of further illness in the interest of reasearch in my opinion.  A definite diagnosis is first stop, before treatments can be considered . Patients with cancer should at least be fully informed with modern technology there should be no doubt and size, grading etc  should be standard information in this modern day unless some miraculous cure treatment pops up while being tested. (I wish) its a known factor delays & poor treatment  result in poor outcomes especially so with cancer. Hope your case gets sorted soon and you have more pleasant experience going forward. Every best wish

Thanks katiec60  - i have sort of gone along with it but as we come up to the four month mark and my symptoms worsen, i am starting to get concerned. I am still only pencilled in for the wedge resection on 31st -no pre op is booked as yet so am guessing there is a high chance i wont make the final list that week again. Will be the third time its been cancelled before or on the day.

Thank you for message hope all goes well for you I'll  have to wait till January.Try to enjoy Christmas. When I read peoples woes  it makes me feel more sad at the state our health service has reached. Take Care and best wishes