Recently Diagnosed 😢: Hi 4 weeks ago I... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

5,080 members3,078 posts

Recently Diagnosed 😢

1968 profile image

Hi 4 weeks ago I had the flu, I went to my doctors and they said I had a left lung infection, I was sent for a chest xray.

Next day I was called to the hospital as they seen something on my right lung, I then had a CT scan which identified two nodules attached to the top right pelura.

I have had a PET scan and it has thankfully showed no spread or hot spots anywhere.

I do have bullous emphysema (2010) but it causes me no symptoms and I'm not on medication.

The 2 modules were not there in 2016 as I had a xray then and they wernt there, one is 3.5cm and 2cm.

I've been told if they try get biopsy's the lung will burst and we will lose it dye to the bullous emphysema.

They want to go streight to surgery and take out a third of the top right lung.

I have no symptoms of lung cancer and they recon they have caught this early.

And advise help and support would be much appreciated.

18 Replies

Hi, are you the David trying to contact me?? Bill

Hi David

I didn't have the same symptoms; mine was just a shadow, which turned out to be a large tumour. Because of it's location, it couldn't be operated on, and obviously, I wasn't in a position to argue.

I think if there are no signs of cancer, what the medics are suggesting is the right thing. Since it seems to have been detected early, what ever it is, can only be good. If they think the operation is best, I don't think they would do this, unless they reckoned the outcome would be good.

A close relative of mine was found to have lung cancer a couple of years ago, and a chunk of her lung was removed. She has never looked back.

We're all kind of different inside and what's good for some is not necessarily good for others. Personally, I found that my trust in the doctors was justified, and I don't think that they would suggest this operation unless they were very sure of a good outcome.

I wish you all the best, Bill

Many thanks for replying back, I just want it all done so I can move on.

I think I agree with 1968. Good luck with it. I have had a lobectomy and I think it was for the best as it was clear re-section.

Something like this happened to me only mine was a shadow. I had ct scans, pet scans and bronchoscopy none showed cancer but as the shadow kept on remaining they come to the conclusion it was early cancer and was right near an old tb scar. I had surgery 6 weeks ago and had half left lung removed. I went for results after coming out of hospital and it wasnt cancer. It was a infection that turned into inflammation and they term it granuloma. No treatment for it. It would of eventually disappeared on xrays.. So take heart in the fact that your pet scan shows no cancer hotspots...

1968 above

Many thanks for the replies, I guess cause this was caught at an early stage, once the top right lung is removed it won't 're ocure, im just awaiting a date for surgery.

Keep us informed when you are going into hospital and all the best. You will get lots of strong pain killers. I stopped having any at my 5th day after operation as it caused constipation and i have IBS

Dear David

Welcome to the forum where we hope you will find support and encouragement.

It sounds like the doctors are quite clear in their professional opinion of the recommendation of the partial removal of your lung. In this way, as you know, it allows a definitive diagnosis through the tissue being fully analysed in the lab. Given that biopsy is not an option , surgery may be the best way to achieve diagnosis and remove whatever nodules there are there.

It is encouraging that they have said , whatever is there has been caught early.

I have placed a link below about lung surgery from our website if you are interested:

roycastle.org/system/file_u...

There is a lot of useful information on our website roycastle.org

If you wish to discuss anything you can call our free nurse led helpline Monday to Friday on 0800 358 7200

All the very best

The Roy Castle Support Team

Morning, thank you for the reply.

I shall read through the links you have sent, I shall also call and have a chat with one of the nurse's of that's OK.

Davud1968

What are the 0800 phone line times.

Mine showed as a lesion on the left lung on emergency presentation in Oct 2010. A month later CT clearly showed something concerning so sent for a PET scan. A couple of days later called to see a cardiothoracic surgeon (despite having an appointment for a week later) who told me there was a 'mass' in the top of my left lung that had to be removed along with the upper left lobe. I asked why they weren't going to do a biopsy (I'd been on google!) he explained, that whatever it was, it needed to come out as it was blocking the top of my left lung and they'd do the surgery then send it away to pathology to determine what treatment was needed. That was Dec 2010 and I had open surgery and diagnosis jan 2011 of adenocarcinoma (mucinous broncheoalveolar carcinoma) 7cm x 2.9cm x 2cm. I did not have chemo or radiotherapy and did not have the only biomarker tested for at the time (EGFR). So much has changed in recent years in terms of treatments but as the tumour was removed completely, it had not spread to lymph (nodes were removed) and chemo was unproven with the specific type I had, I've just got on with life. I was back at work within a couple of months, flew to Scotland for work within 3 months and returned to swimming, working, travelling. The only symptoms that made me go to A&E was that I felt as if when breathing in, it wasn't going anywhere and that everything was shutting down, a sudden onset sore throat (felt like broken glass and as I had tonsils out aged 4, this was very unusual ), difficulty swallowing, sudden onset violent cough that caused stress incontinence and a swelling on the left side of my neck. I was sent for chest xray where it was found although then misdiagnosed and mistreated as asthma for a week, hence the delay in getting the CT scan (and broken scanner). not many patients are able to have surgery due to position of tumours, too advanced etc so I'm eternally grateful for the opportunity and treatment I had.

Interesting that they didn't do a biopsy before surgery...it added a couple of weeks into the 58 days it took for my treatment following referral and I wonder now why it was necessary given the CAT scan result, the 3 x-rays showing a growing mass and then a PET scan as well. I know the latter is v expensive so perhaps the biopsy was needed to justify the expense of a PET scan. I sense at my hospital there is a fixed process you have to go through even if it upstages your cancer (mine went from a T2A to a T2B in the 58 days). Every test result had to be considered at a weekly hospital team meeting before the next test could be ordered (Papworth Hospital). I think some short cuts are needed - as I wrote on the CQC questionnaire I was sent last week.

Since my diagnosis/treatment, things have moved on considerably in lung cancer care even in the last 4-5 years. I am now on a number of lung cancer research committees/clinical expert committees (I'm not a clinical expert but a patient voice) and there is now a national optimum lung cancer pathway in place (adopted by NHSE in 2017), there have been new international standards for the TNM staging agreed, the national lung cancer audit in the UK has provided evidence where centres/patients had less favourable outcomes than other centres so standards have been introduced and a protocol for lung health checks/screening pilot schemes has just been adopted in readiness for extending the pilot schemes so far operating in manchester so that there will be a common approach. There are still variances in the ways patients are treated but there is much greater harmonisation of procedures than 8 years ago. However obtaining the pathological result took from 16/12 to 13/1 before I had the diagnosis (due to Xmas/new year holiday period affecting pathology results) and as I'd actually been admitted and then discharged on 15th October, it was deemed clinically urgent and sufficient evidence to operate and remove the 'mass' whatever it was.

Thanks for reply Janette..interesting. I guess I am looking for ways to shave off time post referral when the real issue for me was the two months wasted on anti-bios by a GP who wasn't alert and being a never - smoker nor was I. I am so pleased to know that you are going strong after 8 years; its a great reassurance.

There is so much work to do to raise awareness amongst the general public and GPs about the increase in never smokers who develop lung cancer as it can mean delays whilst we're put on antibiotics (several courses) then often steroids and as I feel I'm still here after an A&E visit where I was given a chest x-ray (cost to the NHS less than £50) and a 7cm tumour removed with half my left lung, there needs to be much more coverage especially in lung cancer awareness month to increase and improve awareness of this. I've met survivors of 20+ years and I'm still amazed to say that it's almost 8 years since my surgery - as based on all the stuff I read at the time, I wouldn't make this point. Just goes to show - somebody has to be in the survival statistics! Also learnt to make life count! good luck.

Absolutely. I am interested in the availability of CT scans and GP/patient awareness and as you say, differential treatment and perception by GPs of risk to non-smokers. I found 20 years ago likewise with my breast tumour which was initially missed by a Harley St Consultant who didn't see past the fact that I was low risk age wise and that I had a clear mammogram (the mammo missed the tumour hiding behind a cyst) and dismissed the other symptoms. Presenting with the cough this year, I found there was no reluctance to x-ray but unfortunately x-rays don't distinguish between infection and cancer - and in my case both were present on all 3 x-rays but assumed to be all infection on the first two occasions. I await info on lung cancer awareness month...I think its Nov. Am ready to assist if Roy Castle has any plans.

Yep he to, sounds the same I've got a 3.5cm and a 2cm attached to the pleura, not spread anywhere. Hopefully surgery within 2 weeks.

You may also like...