Lobectomy With Emphysema

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I would like some opinions/ideas on this one....

Diagnosed with emphysema beginning of April this year, classified as ''moderate'', following coughing up a lot of blood.

Following a CT scan the hospital noted that I had a lesion/mass on my left lung about 3.35cms long, a CT guided biopsy was ordered and done and found only inflamed lung tissue.

Advised by hospital doctor to ignore the biopsy because without a doubt I had cancer and ''by now it will have spread to all parts of your body'', sent for abdominal and brain CT scans and also a bone scan..... Results of these scans completely negative and no lesions to be seen anywhere else.

Referred to surgeon who was not happy because he did not know what he was supposed to be operating on and then referred for a PET scan from neck to mid thigh.

Result of PET scan was that I had a solitary pulmonary node 2.5cms across (i.e.smaller that the original CT scan), plus possibly cancerous polyps in the colon, and some activity in the lymph nodes near the ''mass'' which could be due to the mass IF it was cancer, or an infection. The PET scan suggested that they should do a biopsy on the solitary pulmonary node (again in other words).

Another CT guided biopsy done and again it did not show cancer. 

The doctor is calling these biopsies ''non-diagnostic'' because it did not diagnose cancer. In other words he still thinks I have cancer even though they have not found a single cancer cell yet.

Six months after the original CT scan another CT scan which found the mass was now 2.7cms across, smaller than at first but the doctor says this was probably because it was inflamed on the first CT scan, and that it is a slow growing tumour which must be removed.

So far they have no evidence to say it is a malignant tumour, but the solution according to the surgeon is a lobectomy to remove the unknown mass and the lower lobe of the left lung.

To me this is rather like saying that ''we will remove the foot because the patient has an in-growing toenail''.

How can break this deadlock with the hospital as I have made it quite clear to them that a lobectomy is out of the question because of the COPD and the risks involved which would more than likely make my breathing worse, and yet they are unwilling to do a simple laparoscopy to do a proper biospy with a sensible amount of material.

Any opinions on whether the idea of a lobectomy when I already have breathing problems is really a good idea??

Any practical experience of this anybody?

 

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6 Replies

  • Posted

    By the way the polyps in the colon were just that, benign.
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  • Posted

    Firstly I'm afraid a 2.7cm nodule in the lungs is almost certainly lung cancer.

    Secondly lobectomy often improves emphysema, by reducing hyperinflation and increasing tidal volume. Indeed some people actually have lobectomies to treat emphysema.

    It is your body - your call. If it were me I would have this surgery as quickly as possible.

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    • Posted

      Thanks for your response Ben.... I have read of people having lung tissue removed to improve breathing particularly when the emphysema is present at the base of the lungs as this tissue is not usable and can therefore be removed to provide extra space for the rest of lung to inflate unhindered. In my case the emphysema is, apparently, at the top of the lungs so removing the lower left lobe would remove usable lung.

      The 2.7 cms is somewhat subjective according to another radiologist who has looked at the scan..... Whatever it is is at present uncertain!

      I am in a situation where to worsen or hasten the demise of my current breathing capacity would effectively mean the end of my life as I would have no life. I am regrettably one of those people who have no family and although I do have many friends it would not be fair of me to ''dump'' myself on them and expect them to look after me.

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  • Posted

    Hi, wow, so many conflicting diagnosis, I had a what showed as a mass on the lung and I am 3rd stage emphysema. Was sent to cancer clinic who left it for a year and re did the scan, found no movement in size so was left with it. Do you see a lung specialist? I had so much mucking around with G.Ps treating what they thought was going after umteen scans. Fed up, asked to see lung specialist and it all came together

    very quickly . A specialist will ease your mind and give an expert opinion. Hope this helps, very best to you, you do need a more substantial diagnosis, it's a bit airy fairy at present I am with you, too many conflicting views. Take care will be interested to hear how you go. Kindest thoughts, 

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  • Posted

    Just to let everyone know who is following this thread.... And I had hoped for responses from people with practical experience of this....

    A further CT scan has just revealed that the mass is now only 1.9cms across, the hospital still wants to take it out along with the LLL but if this is cancer then it will be the first malignant tumour that is getting smaller with time.

    In the meantime I have been treated for a lung infection....

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  • Posted

    Hi copdcrete i hope i can give you some answers i have just went though the same thing as you .My journey began in oct of 2016 i ended up in the ER with massive chest pain and some congestion x ray showed i had pneumonia was given antibiotics and sent home two days later my family doctor called told me to go back to the ER for CT SCAN of my chest two after that family gp calls tells me to come in  she shows me the x ray and you could see a little white nodule at the top of my left lung then she showed me CT scan well the mass that was there was the size of a lemon so it was massive was sent to thoracic surgeon on nov 21 2016 and was told he was 95% sure i had adenocarcinoma  lung cancer then everything moved very fast  see i am only 37yrs old at the time so they where very concerned because of my smoking history and my age but within a week i had PET SCAN and ct  needle biopsy   and i had broncalscope  and the had MRI OF CHEST BRAIN and had bone scan too now my pet scan came back and it was very high reading i believe it was around 7 so that means inflammation not cancer my first needle biopsy came back false positive so cancer or no cancer my other biopsy came back as necrotizing granuloma inflammation now it like WTF problem is with that cancer can hide in that so now after seeing the surgeon lung specialist and cancer doctor they decide the next option is to do open lung surgery so on march 29 2017 three days after my 38th birthday i was wheeled in to operating room and had the mass removed  my surgeon told me after that the top part of my lung  was jello and it was good thing they operated what they removed was i fungal ball yes thats right fungus growing on my lung  thing is 6 hrs later i had compilations and internal bleeding the had to rush my back in and they removed more lung all in all i had 2/3rds of my upper left lobe removed i was also diagnosed with emphysema from my smoking 30 yrs almost 2 packs a day but it wasn't till July 2017 i finely got the news it wasn't cancer it was NTM XENOPI which is non tuberculosis mycobacterium which is basically an environmental  contaminant that is found in water or soil so i will never know where i got this form ever. now if you do go though with surgery which you should see if there are options like VATS instead or open lung i wish i had VATS done instead of open lung it is less painfull and recovery time is much better .ps i was lucky they didn't have to remove any ribs 

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