I am sure I will find out the answer tomorrow when I receive a call from my oncologist but I am hoping someone will be able to help me tonight so I can pre-empt myself and prepare for what is said.
I have multifocal adenocarcinoma of the lung. There are sites in both lungs. I am confused because on learning my CT results yesterday the cancer is not in my lymph nodes or any surrounding fluid of the lungs, there are simply sites in both lungs.
Is this advanced NSCLC? On some places I have read that it is but on others I have read it is not. Should I expect to receive a stage IV diagnosis tomorrow?
Interested to know your thoughts.
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Nickyc1805
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I also feel like I should add that after CT scans and biopsies there is no primary tumour site and the other tumours in the lungs are not metastasis. From what I understand they all began to grow at the same time.
Multi focal may be an indicator of adenocarcinoma in situ with a lepidocrocite growth pattern. This cancer used to be called broncheoaveular carcinoma or BAC.
Alternatively, since they all began at the same time that might indicate an infection caused by mold.
Can I ask what .. metastisasis... means please , I also have stage 4 lung cancer also in my bowel ( operation to remove tumour from bowel next week ...
Metastasis is a new cancerous lesion that occurs because the cancer traveled through the lymphatic or blood systems or the cancer grew into another organ and invaded it. If a cancer travels from a lobe on the left lung to a lobe on the right it is also considered stage 5.
Ohh thank you for that information Denzie ..that’s something else that’s new to me as I thought stage 4 was highest /worse you could get , I never knew you could get stage 5 ... x
I don’t think I explained that very well. My apologies. A metastasis automatically makes any cancer a stage 4. Even in the case of moving from one side of the lung to the other. Stage 4 is as bad as it gets but my lung cancer has been stage 4 for more than 9.5 years.
Try not to pre-empt and imagine - unless you're a doctor or researcher specialising in thoracic malignancies it is an extremely complex field. I'm not trying to be patronising but even the clinicians I know - specialists in their own right (radiotherapy, chemotherapy, surgery) struggle to keep up with the various changes and issues dependent on the characteristics of tumours.
Staging is in accordance with the internationally accepted IASLC TNM8 standard - some of it relates to size but mostly to spread. Even with BAC (mine was mucinous BAC 7cm stage 2b t2), this has been reclassified twice under the international lung cancer community. It would now be invasive mucinous adenocarcinoma t3 stage iii whereas other stages of BAC are listed as minimally invasive adenocarcinoma or adenocarcinoma in situ dependent on the characteristics seen under the microscope of the tumour sample (biopsy).
Having discussed my situation with a renowned chest physician in Nottingham he explained that many cases like mine are a mixture of types not clear cut at all. I have also had sites in the other lung but these reduced and were believed to be inflammation - they appeared a couple of years after the first.
I'm unsure why you believe this is not the primary site - if you only have tumours in the lung, that would be considered the primary site but if you had breast or colorectal cancer already and also appeared in the lungs, that would be metastatic(secondary) cancer of the lung.
Much of the information on the internet is very out of date. Many breakthroughs and clinical trial results that are approved into standard care are published in specialist medical and scientific journals not accessible to the public generally. It takes time for data to be gathered when such treatments are given to new patients (years) which is one reason for the time lag in publishing data.
It is vital for you to talk to your own clinical team about your own situation as Denzie has said there can be different reasons for your results. Once your clinician has discussed your case with colleagues (multidisciplinary team), they will then suggest the optimum treatment which can vary from one patient to another dependent on many factors. The clinician will usually discuss with the patient and answer any questions.
It looks good that is is not in any lymph nodes (N0)
Much better to deal with the 'what is' rather than speculate on the 'what if' - the latter is a route to extreme anxiety in my view. good luck and try and keep your mind open rather than second guessing. hope the appointment goes well - please update us when you've been.
Thank you for replying. It’s definitely a primary lung cancer as the CT has shown no evidence of anything anywhere else. The tumors appear to have started growing at the same time.
I’m just getting really scared and anxious that no amount of treatment is going to control this.
The fact I feel well and healthy now is really playing with my mind because I don’t want to begin treatment which will make me feel more unwell than I do now!
And compounded with this I still can’t shake that prognosis of 18-24 months...
I was responding to your comment in your second post where you stated ' there is no primary site' - hope this didn't confuse. It's perfectly normal to be scared and anxious. Who has given you a prognosis of 18 months? Simply reading statistics and trying to self diagnose is fraught with difficulty as statistics include everyone no matter how sick and how long ago the data is from nor their ages or other conditions - it just lumps everyone together. Most of the data online is out of date regarding lung cancer and in no way a reflection of today's treatments. My diagnosis 9+ years ago I thought similarly based on the very limited information around at that time. That's no longer the case - but it's a case of knowing which sites to trust and where the more accurate data and information are.
Having been involved in lung cancer research since late 2013/early 2014 have now met many patients who their own clinician (not reading on the internet) gave them a suggested prognosis and they have way outlived it. I have also met patients who have survived 20+ years already and this was before today's new treatments and treatment combinations.
Please do not be so ready to write yourself into those who sadly don't make it as there are survivors in every stage of NSCLC and always have been. I'm also intrigued by your comment that 'no amount of treatment is going to control this'. What makes you sure of this? Hopefully by tomorrow you will have had the discussion with your oncologist with the facts around your personal situation. There are many different treatments - so ask about what might be possible and whether there are clinical trials that you'd be eligible for?
Look for the opportunities - yes, it's difficult but I was told keeping positive helps - so I've always tried to keep my mind open and do my best to stop it racing off to dark places.... good luck with your appointment tomorrow. Hope you've managed to distract yourself this weekend.
It was the oncologist who gave me that prognosis over the phone - due to Covid I haven’t even met her and she doesn’t even know how I’ll respond to treatment! That’s what I can’t shake from my mind.
Also the fact I am completely fit and well at the moment makes it so hard to believe why am I going to put my body through the stress of chemotherapy if it’s going to make me feel worse than I do at the moment?!
I just feel that no treatment will control it. Every test comes back negative and in my mind it just eliminates the options for treatment. I know it’s a dark thought but sometimes I get stuck in these ruts! Xx
Wow - not very professional in my opinion. How would she know? I understand your feelings much more now. It may not be chemotherapy you're offered - there are options. I had surgery to remove half my left lung and my tumour was 7cm - I was fit and well and was back at work and swimming 3 months later. I've not had chemotherapy. Many patients have radiotherapy alone or immunotherapy or targeted agents - some have combinations with/without chemotherapy. No treatment is easy - but the alternative for didn't bear thinking about and once you know what is possible, that will be a more informed discussion. As you describe, it's a downward spiral once you get into thinking like this - so please find a way to distract yourself. There's some good information with 'coping with a lung cancer diagnosis' on Roy Castle lung cancer foundation website along with regularly updated other information about treatment types. A good book is 'Cancer is a word not a sentence' by Dr Rob Buckman that helped me with context.
There's no reason why you wouldn't be fit and well after treatment - I remember reading the poor literature that existed at the time of my treatment Dec 2010 and reading I'd need help putting my shoes on and no mention of ever working again. I started contributing to the reader panel for Roy Castle at that time as I wanted to see more positive information - not Pollyanna but more realistic. there was only one test for targeted therapy when I was treated and that was EGFR and I was negative - now there are many more targets so don't give up if some come back negative. That's all useful information for your clinicians to know exactly how to select the most effective treatment as the wrong treatments can be positively harmful. This is why it takes so long to gather all the factual information from the various tests before suggesting the way forward. I've met patients who've been very fit and active and some, like me, fitter after treatment than before so hang onto hope - it can be very powerful. good luck.
Sorry to jump in but I’m same ..I’ve just turned 51 in February, they told me I had bowel ,lung cancer end of November last year ,I felt totally well ,no symptoms..nothing ..I got a CT scan then PET scan ,they said I had stage 4 cancer but I never got a biopsy done at any time so I don’t know how they could tell it was stage 4 ..I’m confused..I go in next week to remove tumour from bowel ( they said it was a very small tumour) and hopeful that I won’t need a stoma bag or any further treatment to that area ...any advice please ... thank you
no need to apologise for jumping in - that's the point of the forum. My dad had bowel cancer in his 50s when I was in my 20s and had part of his colon resected. 6 months later he had another op and told it had returned but from what I know now about cancer, they clearly didn't remove enough margins around it so he had a colostomy (but without the bag) under a surgical trial called irrigation method. He returned to work and is now my mum's carer (Alzheimer's). We didn't think he'd reach 60 but he was 90 in February. He had another bowel cancer 4 years ago and another major operation. he hasn't had chemo or radiotherapy but 3 major ops throughout his life. They told him the most recent was unrelated as it was 27 years since his first op. Don't fear the worst - there are so many more options now. there are various patient organisations for bowel cancer so they may well be able to offer more advise but do ask your clinical team to answer your questions. good luck with the surgery.
I really love reading stories like this ,when people are still here years down the line ,it really does give you some sort of hope for the future ,and as I said I’m going to really try and think positive..thanks again for your kind words x
My oncologist told me i might live 10-15 months with aggressive treatment. That was in October of 2010. So I joke now which 10-15 months that might be.
Seriously though, Katharine is right, no one should tell you how long you may live. The numbers your doctor gave you are seriously outdated because they do not reflect advancements in precision medicine (targeted medications, immunotherapies and radiation).
Your general health is an important indicator in your recovery. As you are in good health this will work in your favor.
That second lesion should be biopsied. If you ever feel that a doctor is writing you off, fire them and get another.
My doctor, like yours, was all matter of fact when I first saw him the first 2 times. I changed that tone though. Between the 2 appointments I planned and paid for my memorial service and cremation. I established my durable powers of medical and financial attorneys.
When my doctor came into the room and saw me and my cousin laughing he got very stern and said he didn’t think we were taking this seriously. I looked him in the eye, informed him of the steps I had taken. I told him I put the dying stuff behind and planned to focus on living my best possible life. His whole demeanor changed. He became far more cordial after that.
I was told 6 months but as people have said and proved you can’t really put a time on this ,, I’m hoping to be here a good few years yet , I have way to much to look forward to.. good luck and best wishes x
You have been given a detailed explanation and good advice from JanetteR57. Always discuss concerns or specific questions with your oncologist or lung cancer nurse specialist at your clinic appointment. Each individuals management is tailored specifically to them and is influenced by a variety of factors and results of various investigations,for example, XRays,scans,tissue sampling,blood tests and response to previous treatments.
It is a good idea to write down any questions you have for your appointment on Tuesday.
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Nothing new to add because the EGFR test is still incomplete so I am still none the wiser!! Going to just try and enjoy the weekend as I have an appointment on Tuesday.
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