Waiting for results of Lung Biopsy - Scared!

[Savanna01]

I'm a newbie! Would love some reassurance or to hear from those who've been through similar.

I've been getting recurrent chest infections the last few years which always clear up with antibiotocs but after the last severe one a couple of months ago the GP referred me for a chest x-ray which was clear. As a precautionary measure I then had a CT scan. This showed up a white shadow on the left lung. I then had a PET scan which showed active cells on the shadow area (2.2 cm) but no other activity anywhere else. I had a CT guided needle biopsy yesterday and am now anxiously awaiting the results.

The consultant said his first thought when looking at the PET scan was might be inflammation and infection but the strange thing is the lesion has remained exactly the same size inbetween scans (around 4 weeks). If infection one would expect it to either reduce or increase in size.

By way of background I had a pneumothorax on the same lung as a result of the lung being punctured by a fractured rib following a car accident 20 years ago. Recurrent chest infections the last 10 years with a gap of around 5 years of no infections in between. Bad asthma as a child.

I'm so worried I have cancer? Could it be something else? Perhaps infection that hasn't cleared up? (my last chest infection was a couple of months ago). I've been feeling very run down and chesty ever since that infection but don't have a temperature etc. All other tests, bloods and lung function are completely normal.

The consultants/radiologists just don't know but it does looks suspicious and the fact that there are active cells in that area is a cause for concern.

I know I should be positive but this waiting is just awful!

[janeg4]

Hi Savanna

It’s is a nerve racking time waiting on test results and it is possible it’s not cancer ,which I hope is the result of your biopsy. However if it’s lung cancer by what you’ve said it appears to be a small area which can be surgically removed and results of PET scan show there is no spread hence possibly achieving a cure . This depends on the type of lung cancer it is but hopefully is treatable with surgery in your case .

Hang in there keep your nerve if it is lung cancer there are treatment options available to you with possibly curative outcome.

Best wishes

Jane

[Savanna01 in reply to janeg4]

Thanks for your reply Jane. Yes, the waiting is awful. The consultant did say if it is cancer then they will cut it out. I hope, though, I'm not one of those cases where the biopsy proves to be inconclusive and they recommend to chop it out anyway only to discover it's only inflammation!

[jckjanetrosalin]

I had shadow on left lung and had loads of test but it wouldnt go. In the end they thought it was early cancer and done a vats lobectomy on left lung. After it being sent to lab it turned out to be inflammation which would of gone eventually by itself.

Lost half lung but thankfully it wasnt cancer. Hope this is helpful for you.

[Savanna01 in reply to jckjanetrosalin]

Thanks for your reply. I'm sorry you lost half your lung. I've heard the same thing a lot recently and I just don't understand why they would go ahead with that surgery if they weren't entirely sure what it was. It's pretty drastic. Surely the biopsy would indicate whether cancer or not? Is there no other way of testing other than the surgery? Did they not try and treat the shadow in case it was infection/inflammation? Would a second opinion of made a difference do you think?

[jckjanetrosalin in reply to Savanna01]

I didnt have a needle biopsy as i had a bronchoscopy which told them nothing, it consisted of a lung wash which was sent away for testing. They said a needle biopsy may tell them nothing so the only sure way was to remove the lobe of lung where the shadow was. They did give me choice to wait and have more ct scans but they thought messing about any longer wasnt a good idea and if it was cancer it was best to get it sorted.

[Hidden in reply to jckjanetrosalin]

I am a novice here but surely the issue here is not one of over treatment but one of not being sure of the results. I am a pragmatic sort of person and if the surgeon thought it best to go the surgical route to remove the whole thing with removing a percentage of lung tissue, rather that follow what he thought might be an infection and the results of each outcome were the same - I would have the removal every time - belt and braces, then totally nothing to haunt me down the line - did it come back - has it changed etc etc.

At this present time my wife has had numerous tests after finding a dark patch on her left ling during a routine x-ray the very first one she has ever had at aged 69. Then a CT scan and nothing conclusive and a bronchoscopy last Thursday with nothing further, other than to say there appears to be a small pocket near the top of her left lung with a little hole in it where they had to wash the area to capture cells to biopsy. Could be an old or recent infection, the remains of a bad chest cold TB or Cancer. She had her letter the day after the bronchoscopy calling her back to clinic on 11th for the results.

We are just the same as anyone else with this damned wait which could lead to so many life changing events. Funny thing, this all began with a burning tingling sensation in soles of feet with the tops of the feet being really cold. Not circularity nor myopathy or diabetes, so the tests began. She is also planned to have an echo next week for everyone indicated a possible heart problem UNTIL the routine x-ray. I know we are no different to anyone else it's the thought of 46 years marriage and losing my best friend that really hurts. I know all about posativity and being there for her and never losing hope but find it so hard to put all that into place and move on!

The very last thing I need is sympathy ( a good friend of mine replied well if you ever do you will always find it in the OED (dictionary) where sympathy can be found between shit and syphilis! Sorry if I offend )) and would welcome any feedback regarding recent tests, prognosis, suggestions - and fully understand the limitations of anyone's answer - just looking for similarities, what ever the outcomes. Thank you all in anticipation.

[jckjanetrosalin in reply to Hidden]

I had shadow on lung that wouldnt go. I had ct scans, pet scan and brochoscopy. None gave any answers but they really thought i had early cancer so they operated and i had lobectomy by vats. When i got results back it came back as inflammation that was from an older chest infection... I was relieved it wasnt cancer but did loose half lung to find out. I can tell you I still do my exercises as i have done for years but i also have done couch to 5 k running. Which i have completed with the last week of it being half hour run with 10 mins of walking. Which i had to do 3 times in the last week. I never ran before in my life. Im 73 and done this 10 months after my surgery. So it doesnt affect your life .

[Hidden in reply to jckjanetrosalin]

Thank you so much for the kind and hopeful reply. I never quite realised how important the word HOPE is - thank you again and your experience is my hope since many of the answers could be interpreted, in general terms, the way you have described.

[JanetteR57]

Savanna, sorry to read your situation but try not to think of the worst. Many people have lesions/shadows on their lungs as a result of scarring/inflammation from repeat chest infections,TB etc - not everything is cancer. I went to A&E in Oct 2010 with strange symptoms for me - difficulty swallowing, excruciating pain in throat (like glass) , stress incontinence with a sudden onset violent cough that had come on a few days earlier but I really didn't feel 'right'. A chest x-ray was done and 'a lesion on the left upper lung' found. Radiographers mentioned whilst I was in the room it might be a clot'. After 7 hours I was discharged with steroids/antibiotics to be readmitted the next day with worse symptoms. I'd had childhood/early asthma (but not in many years), I was misdiagnosed as 'uncontrolled asthma' despite the chest xray and treated with asthma medication for 6 days in which time the cough worsened so I was unable to have a CT. Colleagues in respiratory medicine told me people like me who go years without any incidents can be at risk of fatal asthma and scarring on the lungs i.e. reassuring me it was unlikely to be sinister. A month later I had the CT and the lesion showed as a 'large mass'. A PET scan was 'variable' and an appointment made with a thoracic surgeon. He told me whatever it was, it had to be surgically removed due to its size together with half my left lung. I didn't have a biopsy as imaging was decisive and he decised they would remove it, send it to pathology for testing to determine follow on treatment. That was in Dec 2010 and in Jan 2011 I was told it was lung cancer. A 7cm tumour was removed and so far so good. Back at work within a few months, swimming and lead an active life (still get chest infections). If all your other tests are normal, (mine weren't), that's a good sign. Try and distract yourself if you can - waiting for test results can be agonising otherwise. Try and stay away from the internet as information is mostly out of date, doesn't differentiate between when cancer was detected, age of patients or other health conditions so can appear worse than reality. Some is very inaccurate. I'm now heavily involved in lung cancer research and LC committees that show thousands of people work in lung cancer research globally and many new treatments have come along in the last few years that are changing the situation in a positive way. Hoping it isn't cancer but if it is, there are treatments. Good luck whatever it is.

[Savanna01 in reply to JanetteR57]

Thanks for your reply Janette and I'm glad to hear that you've made a good recovery following your surgery. I spent a lot of time with Dr Google following my first scan which was 3 weeks ago but become quite depressed by what I was reading so stopped and have been keeping busy with other things. Unfortunately, I'm a bit of a pessimist by nature! It also doesn't help that my grandfather died of lung cancer but he was a heavy smoker.

[JanetteR57]

Like you, I also used Dr Google (Oct 2010) there were no patient support groups online. Thankfully a friend who'd survived stomach cancer (he was a year older) whose wife is a nurse warned me away from the internet. Back then there were even fewer treatments and I was convinced I wouldn't make it at times. However as they both reassured me, statistics are just that - I was only just 52, fit and active, a never smoker - yet those statistics include all ages (many lung cancer patients are older, with other conditions and long term smokers) and often lag the reality of what is happening now. Research data takes a long time to gather and for many statistics organisations only gather it annually and then publish it a year later - i.e. 2 years out of date as a minimum. Things are moving so rapidly in lung cancer treatment and research that even within months a study publishes somewhere in the world showing promising results from a new agent or combinations of treatments or less invasive surgery or giving treatment a after treatment b instead of before - or using different doses of radiotherapy or using less invasive surgery methods than before - you get the picture. Even as somebody who attends several conferences a year, the pace of change and hope is considerable . So many people including general practitioners and clinicians who are not involved in the world of lung cancer at the moment can also be somewhat pessimistic. Don't be - there is much to hope for. Wait until you have a definite diagnosis and then it is very important to work with your own clinical team as treatments now (if it is cancer at all) are very targeted dependent on the specific biological characteristics of the tumour and the patients' DNA as well as any other health conditions/medications that may impact on such treatments. Even 8 years ago, much less was spent on finding out what was causing it or finding new treatments - lack of investment and stigma left the biggest cancer killer of men and women in the UK as very much a cinderella. Thankfully massive investment, international interest and clever science/technology are improving that - unfortunately the public awareness hasn't yet caught up with the many developments. Good luck whatever it is - hope you'll soon be on the mend.