Denzie

Only a biopsy can confirm it’s cancer. They can be pretty certain but without a biopsy you don’t really know for sure.

Eorwyn in reply to Denzie

Thank you x

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Bow-19

I would think that you would need a bronchoscopy which will take a biopsy to say if it is lung cancer and to show what type of lung cancer it is as there are different types. In a biopsy cells are taken from the area and then there is a process in the laboratory which takes a certain amount of time to say what has been found. Please make sure that it is fully investigated so that you know what is causing what. I was actually missed by my local hospital as something showed up on the CT scan and a bronchoscopy biopsy was not performed. I then found out 11 months later that I had lung cancer. If I had known then what I know now I would have made sure that I had had a biopsy. Thinking of you both x

Eorwyn in reply to Bow-19

So sorry to hear that. Thank you so much for your advice. Wishing you all the very best xx

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Bow-19 in reply to Eorwyn

Hope that others can learn from it, so that’s why I am mentioning it. Due to successful treatment I am still hear 6.5 years later and on a targeted treatment. Wishing you and your partner all the best too xx

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janeg4

As said before cancer can only be fully diagnosed by a biopsy.

A CT scan discovered a mass in my right lung 2012, due to position biopsy was unable to be done . However it was thought to be lung cancer and I proceeded to surgery when the biopsy was done and a lobectomy carried out.

There are lots of treatment options available , good luck .

Jane

Eorwyn in reply to janeg4

Thank you Jane xx

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Alldiffer

I had a similar experience. A locum GP called me in about the CT scan and said he was very sorry (etc) but it looked like cancer with secondaries. He made me feel I would be dead within a few months. A week later we saw a respiratory consultant and his attitude was that we don't even know it's cancer until biopsy results are available. But when I said 'what else could it be if it isn't cancer', he didn't say much.

I told him how confused I felt about the mixed messages, but I was also surprised at how much better I felt after seeing him. It turned out to be inoperable cancer as the GP feared, but the targeted therapy I am on is working well and I feel nearly normal now, which is what the consultant had said might happen.

I hope things turn out well for you.

Eorwyn in reply to Alldiffer

Thank you for sharing your experience and I wish you all the very best xx

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magstherunner

Hi. My cancer was diagnosed following a ct scan and I was called into the hospital the very day after the scan and given the news. I didn't have a biopsy but as I had a litre of fluid taken from my chest (I was totally unaware it was there which surprised the doctors who felt I should be having extreme breathlessness!!) samples of this were sent off to discover the type of cells present so that the treatment could be tailored accordingly. I had to wait for this to be confirmed via a blood test, but started treatment within 4 weeks. It's a difficult time for you. Try to stay positive and appreciate every day and every small improvement. Take care of each other. M

Eorwyn in reply to magstherunner

thank you. Take care xx

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Babydolltina

Eorwyn, I'm so sorry you find yourself here regarding your Partner. My wife was a very similar case in January 2019. They had to do a CT scan and because of the look of the scan the Consultant said he was 90% certain it was Lung Cancer. My wife then went on to have 3 Biopsies. This just put everything into stone and was therefore treated for the strain of Cancer that it was. Sadly hers was advanced and a Very aggressive type but the treatment was working.

Please do not take everyone's case and think your Partner will be the same. Think Positive and it will Stay Positive. Good Luck Both, you will need strength to deal with the next part of the journey.

God Bless

John

Eorwyn in reply to Babydolltina

That's good advice. Everyone is different I guess. Best wishes xx

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RoyCastleHelplineAdministrator

Dear Eorwyn

Welcome to the forum where as you can see there is a lot of support and encouragement. Sorry to hear there has been some confusion from the comments made after your partners CT scan which is understandably a worrying and distressing time for you both.

CT scans will show any abnormality that needs further investigation, e.g, a PET scan which is a more detailed scan on how the lungs and tissues are working , a

bronchoscopy with biopsy to determine a diagnosis through tissue analysis.

We have lots of information on our website , one of our booklets details what investigations are done to either confirm or exclude a diagnosis of lung cancer. This link will take you directly to the booklet, which is titled 'managing your lung cancer diagnosis', please do not be put off by the title as obviously we do not know what your partner has, but it may help explain what happens next:

roycastle.org/help-and-supp...

If you wish to discuss anything after your partners consultation today, you can either email us at lungcancerhelp@roycastle.org or call our freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

Kalilou2

I was told after a CT scan that it wasn’t a clot. They more or less told me I said is it cancer and the Dr answered and they need to do further investigations. I asked had it spread he didn’t have to tell me anymore really.

I left the hospital with all the information.

It read

Pneumonia

T4 Tumour stage 4 and was inoperable due to an artery and vein

N3 or N2 is Nodes stage can’t remember. They though I was stage 4 but I was actual 3b

Ground glass and nodules that sort of stuff.

Then I had a biopsy which will tell you the type of cancer, mine was Adenocarinoma and squamous cell

I went into have a pet scan to see if it had spread to anywhere else and it didn’t.

After 4big rounds of chemo and 6 weeks of radio it has been just over a year I’ve finished treatment and have checkups every three months

Stay positive and good luck there’s lots of different treatments today.

Eorwyn in reply to Kalilou2

Thanks for taking the time to reply. This is optimistic. I know my partner was made to feel like he had days to live by the consultants he saw, let alone that he had lung cancer. To hear people's stories has made us both feel a little more positive. Thanks for sharing.

All the best xx

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Sannyboop in reply to Eorwyn

Hi I’m the very same ,I left the hospital thinking ..this is it I’m going to die ,started the tablet (chemo ) went back 3 months later scan showed my tumour had shrunk by half ,my last scan ( at end of April showed another decrease in size of tumour so decided to operate on tumour in my bowel ) they at first said it was more or less not worth having surgery at beginning,I’m now booked in for my operation next Monday ..I haven’t seen my latest scan pics ( due to Covid 19 ) but hoping to see the difference when I go in next week .I haven’t been coping well at all ( the thought of leaving my kids etc ) but after reading your stories has given me some hope ...best wishes to all and thank you for giving me some hope 🙏🏻 X

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Eorwyn in reply to Sannyboop

Good luck xx Wishing you all the best xx

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Sannyboop in reply to Eorwyn

Thank you ..god bless

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JanetteR57

People's stories vary dependent on when they were treated/diagnosed as in the last few years a National optimum lung cancer pathway was instigated in the Uk to try and reduce the variations. I don't know which country you're from. I had a 'lesion' show up on a chest x-ray when I went to A&E in Oct 2010 but told it likely to be scarring/infection and a CT was booked for a couple of weeks after I'd been discharged after a week (told it was uncontrolled asthma) but then the scanner broke down. As a never smoker no urgency was put on the CT and it took a month to have that then another week or so for the results when I was told by a registrar that the 'mass/shadow' was cancer but when I queried it, she backtracked and told me she couldn't interpret the scan. My case went to a multi disciplinary meeting 2 days later and was discussed and I was sent for a PET scan. A day after the scan had a letter from a thoracic surgeon offering an appointment about 10 days later. I googled (not recommended) what a cardiothoracic surgeon did and thought somebody was going to cut my chest open. When I had a call from his secretary telling me to go in first thing in the morning (not the appointment about a week ahead), he told me 'this mass had to be removed with half my left lung'. Having googled I then asked if a biopsy was needed and he said, it was clear from all the images something was in my lung - large and needed to come out. They wouldn't waste time with a biopsy as when the surgery was underway a frozen section would be sent to the lab to determine what it was and what follow on treatment might be offered. I didn't get the results of the pathology until 13th Jan almost a month after surgery and it was mucinous adenocarcinoma (7cm tumour) . Nowadays the standard is to biopsy where possible (either bronchoscopy or EBUS or needle (rarer) but the whole approach is by a team of clinicians to determine the best treatment. The staging and sizes etc are usually only confirmed when a biopsy or pathology is done - imaging can give an indication but sometimes these are inflamed and go down on their own accord. You asked what else it might be on imaging - scarring, benign tumours, fibrosis - not everything is malignant.

Have a look at the information on Roy Castle website for more information on coping with a diagnosis and the different treatments. oh... and stay away from google - much of the information is inaccurate and very out of date. there are new treatments coming all the time but many of the details only get into academic scientific journals rather than generally accessible publications.

When I learnt and looked at the information around then, I thought I'd never return to work or do anything - I was at work 3 and swimming 3 months later and went onto swim much further than previously (and already swam 130 lengths 3-4 times a week)....

I'm now involved in lung cancer research nationally and internationally and wish for 2 things - more awareness of the myriad of treatments and that clinicians would learn to be more circumspect with their casual comments when they do not know things that are really important to patients and their loved ones.... good luck.

Eorwyn in reply to JanetteR57

We're in the UK Janette too. Thanks so much for this message and taking the time to give us this information. I've been on Google nearly every day and although usually, in other areas, I check the information I must admit I haven't done with the stuff I have seen on lung cancer, so I never thought that it might be out of date etc!

At the moment, I know we both feel that our lives are going to change enormously but seeing everyone's messages and yours around your recovery has given us some real hope.

Thank you thank you xx

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JanetteR57

Wow - you've probably frightened yourselves to death! I know I did 9 years ago and there was very little other information to counter the outdated stuff. In the last 5-6 years treatment and knowledge have increased exponentially - and there is global collaboration for lung cancer research and treatments. Ordinarily I attend lung cancer conferences and workshops in UK and Europe on a regular basis but of course they're going on virtually now.

It's not only out of date but the statistics include everyone - of all ages with all sorts of comorbidities that make them almost meaningless.... many studies don't publish for several years and then only in specific conferences or journals even when they change standard of care....

Trusted sites are Roy Castle (the only UK charity dedicated to lung cancer) as some treatments are available differently in different healthcare systems so better to work at what's available in the UK (NICE guidelines were updated last year) and if latest treatments are discovered/publicised/evidenced to exceed standard of care these are usually discussed by an expert panel to determine whether NICE endorses them then guidelines are updated.

For information on nodules the latest details are part of the Screening advisory group protocols (British Thoracic Society guidelines) and all this information is also on Roy Castle's website. The other group I'm on is the British Thoracic Oncology Group (BTOG) to raise awareness of the thoracic cancers amongst healthcare professionals. BTOG has video clips of different treatments in bite sized sizes - usually from various conferences but best to look at these when treatment has been decided as there are so many types that most will be completely irrelevant. BTOG compare best practice and share knowledge for improvement of services. These are also considered by NHS England Clinical Expert Group for which Roy Castle charity offers the secretariat so details on their website.

I'd also recommend this from European Lung foundation (I'm on the group that helped compile this information but isn't updated as regularly as Roy Castle's) . Other charity sites include all cancers so I'd always recommend looking at any charity dedicated to a specific type of cancer as there can be so much variation in outcome, experience and treatment.

europeanlunginfo.org/lung-c...

JanetteR57

maybe to give you more hope - I've met many patients who have survived 20+ years and that was before some of the latest treatments - I had no idea from what I'd read or seen that this was possible..... keep the faith and hope.....it's certainly improved a lot and often medics less involved with it are unaware of the breakthroughs made....

Eorwyn in reply to JanetteR57

I can't thank you enough for all that information. I have just messaged my partner (who is at work) to say that once he sees your messages I think he will feel more hopeful (as I know I do). Keep up the fantastic work you are obviously doing.

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JanetteR57

Glad it's of use - and hang onto hope - it's crucial.

The first lung conference I attended as a patient advocate in Jan 2014 (BTOG annual meeting in Dublin) I heard so many fantastic trials going on and in the years since, have been privileged to hear trial results that have gone onto change treatments for everyone. I also barely understood a word they were saying given the scientific terminology as I'm neither a medic nor a scientist....so I've had to learn a lot....

When I was diagnosed it was much more hit and miss whether you could have a treatment allowed on the cancer drugs fund, compassionate grounds or something but trials like CRUK's Lung Matrix trial for non small cell lung cancer have changed the way trials are designed and they have different pharmaceutical partners enter with new treatments introduced as they're developed and the genomic testing done at the start from the tissue from NHS biopsies means not having lots of additional tests.

Each treatment mode has changed since my diagnosis - for example the open surgery I had (thoracotomy which incidentally did not involve cutting my chest at all - so much for Dr Google!) has been overtaken in the Uk by keyhole surgery for lung tumours, radiotherapy has changed in terms of types delivered, frequency, duration, chemotherapy is more often delivered alongside something else like a targeted agent aimed at specific characteristics of the tumour determined from pathology, and many are treated in a multi-modality way using combinations of radiotherapy, chemotherapy, surgery. Then immunotherapy came along a few years ago. Initially it was saved until the other treatments had stopped working but nowadays the optimum treatments are given up front to get the body to get its own immune system to respond... nowadays most clinical trials are about reducing the doses of various treatments or the frequency to reduce the damage done to other cells in the body to still be efficient but not so debilitating....

So wait and see, if it is confirmed as cancer, there are different ways to attack it especially if non small cell.

Eorwyn

Thank you very much. You really are lovely to share all this. Showed it to my partner when he came back last night and it made him feel better too. He is having a PET scan next week hopefully and a lung biopsy the following week. When we spoke to the private consultant last night that my partner gets through work, he said we were on the right path. So we feel a bit better knowing that and seeing the information you sent

Kayben21

Hello. Sorry to hear about your partner. My partner has been recently diagnosed and this forum has been wonderful support. My partner was hospitalised late Feb with liver issues and whilst there had pneumonia and was in critical care. Thankfully he pulled through. While in hospital he had many scans, and one of these showed a shadow/ mass on his chest. The doctors said it could potentially be cancer and would need to be investigated. He went on to have an MRI, a PET scan, broncoscopy and two chest needle biopsies. It was confirmed as lung cancer with spread to an adrenal gland and the results of all the tests lead the team to recommend Immunotherapy as treatment. This starts in 2 weeks time. It has seemed like a very long journey, but understand the importance of all the tests to get the most appropriate treatment. We are taking it one day at a time and whilst it is a terrible situation to be in, the NHS team have been amazing and supportive. Wishing you both the best.

Eorwyn in reply to Kayben21

All the best xx

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