Newly diagnosed

[Crafty57]

Hi. This is my first post. I was diagnosed with non small cell lung cancer adenocarcinoma, just over a week ago from a CT scan. I then had an EBUS, the MDT team was supposed to talk about me on Tuesday but I have to go for another needle lung biopsy tomorrow. I’m so scared of this. Has anyone else experienced this. I don’t want to phone the cancer nurse up because I’m scared of the answer, hope this makes sense. Thanks in advance

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Crafty57

Welcome to the forum where you find support and encouragement. Sorry to hear you have been told you have lung cancer and the worry you have with waiting on test results.

A CT scan can show an abnormality, but on its own does not usually diagnose cancer. Any abnormal area that shows up would merit further investigations which are usually a PET scan where this produces images of the lung tissue, bronchoscopy with biopsy or if they are looking at the mediastinal area (centre of the chest between your lungs) they would do the EBUS (Endobronchial Ultrasound ).

From what you say it looks like they wanted to obtain a biopsy from the mediastinum area and the needle lung biopsy is to obtain tissue from the lung. Biopsy is the most accurate way to detect any cancer. From these results, the MDT will discuss with you the treatment options that will provide the best outcome for you.

Whilst you are undergoing these investigations you may wish to look at our informative booklet on 'managing a lung cancer diagnosis' which can be found directly on this link:

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

There have been many advances in the treatment of lung cancer and they can be found on this link: roycastle.org/help-and-supp...

There are many inspirational stories of those living with lung cancer and can be found under our campaign section: roycastle.org/campaigns/

You may or may not wish to read all of these, and if there is anything you would like to discuss you can either email us at [e-mail] or call our freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

[Crafty57 in reply to RoyCastleHelpline]

Thank you for your reply. So would thEy have not got enough from the EBUS then do you think.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to Crafty57]

The EBUS would be used for obtaining biopsy from the glands of the mediastinum, whereas the needle biopsy will be taking a biopsy from the lung tissue, hope that makes sense.

Let us know how it goes for you and feel free to contact us at anytime.

Kind regards

The Roy Castle Support Team

[L30KLH]

My husband has just been diagnosed and we had the MDT last week. He has been diagnosed with Stage 4 after being completely for and healthy only 2 months ago. Today he starts his journey of treatment.

Do you have any support from your family

[Vick78]

Hi crafty57

Sorry to hear about your diagnosis, I was diagnosed in August 2019 and had a ct lung biopsy in early August to confirm if my lump was cancer, I definitely couldn’t drive afterwards but I only needed to rest the following day and was back to normal. It wasn’t a pleasant experience but I just needed to lay on my front I kept my eyes closed and there was only a small amount of discomfort. The local anaesthetic removed most of the feeling.

I hope that helps.

Vickie

[GUI-19]

Hi there - sorry to hear of diagnosis. I had lung (needle) biopsy last October to pinpoint type of cancer. It was a bit painful but fairly quick and they also drained my pleural effusion. I was in hospital a couple of days.

It was worth it because they could type the adenocarcinoma and treat it with targeted therapy (tablets not chemo) which is working so far.

The first few weeks I was sure I wouldn’t have long to live and planned my funeral etc but then it all calmed down and seems almost normal these days - treatment is so much better now.

Good luck with biopsy

Alison x

[Sannyboop in reply to GUI-19]

I love your confidence and how you are not letting this take over your life ..I just wish I could feel positive but I seem to just be able to focus on the negatives ...if anything I feel more scared now than I did when first diagnosed yet I’ve had great reports on my last two scans and things are looking good ...please tell me how you cope ...😢

[RLP49]

Hi there

I was diagnosed last with NSCLC in November after a CT scan, PET scan then CT needle biopsy. As Vickie has said you lie on your front, this took me a bit by surprise as I’d assumed you’d lie on your back - make sure you are comfortable as you can’t move. They numb the area and you just feel the pressure and hear a few ‘clicks’ as they take the samples. Don’t be concerned if you cough up some blood afterwards as they told me that was normal.

I then had a lower left Lobectomy in December.

All the best for your treatment plan. Feel free to ask if you’ve any other questions.

Ruth

[Janey_H]

Hi

I had a CT, EBUS and lung biopsy - as the others have said it is a means to an end and helps the clinicians work out the right treatment path for you. You are on your front and may well cough up blood but they were with me throughout and talking me through it all. It isn’t pleasant but it doesn’t last too long either.

I ended up having a right upper lobectomy after some chemo and radiotherapy (having been staged as 3b).

Do let us all know how things go and don’t forget we are here and can support you if you need us xx

[Sannyboop]

Hi I was diagnosed with lung / bowel cancer in November last year ...I had a biopsy on my bowels but have never had biopsy of my lungs..is this something I should have got .treatment I’m on at moment has shrunk tumour in lung so well they have no decided to operate on my bowel and remove the very small tumour ( without the need for a stoma bag ) all going well ...

[Crafty57]

Hi all. Thank you so much for your replies. I had the lung biopsy yesterday, as you all said it wasn’t as bad as I thought it would be. I had to lay on my side though, but your right the worst part is that I had my arm above my head and couldn’t move.

I think the MDT are going to have a talk about me next Tuesday and see where we go from there.

I’m still in shock about it all.

I fell over a few weeks ago and hurt my shoulder, the next thing I know I had a swelling on my collarbone I thought I’d broke it, went off to the drs, he sent me for a shoulder and chest X-ray, then it came back with a shadow on my lung.

Thank god I fell over otherwise who knows what might have happened.

You are all so positive. Thank you 😊

[Sannyboop]

Hi this is what I’m confused about ..I have not had any biopsy done on my lungs ,so don’t understand why they could tell me I had stage 4 cancer ...or can a scan tell you that ..thank you x

[Crafty57]

Hi Sannyboop. I’m sorry but I’m not sure, hopefully someone with more knowledge will answer you.