Concerned Newbie

[Froggy]

Hello everyone - I hope you are having a good day.

Last week I was sent to have chest X-ray by my GP - feeling weak, tired and generally not well. The X-ray showed a ‘mass’ on the top of my right lung and the next day I had a CT scan of my chest and abdomen. I haven’t had any feedback from that yet.

I have a consultation appointment this Wednesday (16th) at my local hospital’s Respiratory Medicine and have no clue as to what to expect. I am concerned about what will be said to be honest - if anyone can give me any advice on questions to ask and what to expect, I would be most grateful.

I have a 78 year old husband who has Lewy Body Dementia who is finding this difficult too, bless him.

Thank you for reading.

Froggy x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Froggy

Sorry to hear of the worry with your chest x-ray, this could mean many things including infection or inflammation, however, anything abnormal would warrant a CT scan which you had fairly quickly. It is appreciated that you have the additional worry of your husband.

At the consultation, they may ask your medical history, listen to your chest, take bloods and arrange for you to have a PET scan which is more detailed 3d imaging of the lungs, if there was anything suspicious there ,then they may offer a biopsy. They may be able to give you an indication what they think it might be from your CT scan, at the appointment, but the best diagnostic tool would be a biopsy if this is needed.

This link will take you to our information booklet on diagnosing lung cancer (this is not because we think you have lung cancer) but any abnormal imaging would require further investigations and the booklet details this here: roycastle.org/wp-content/up...

If you are looking anything up online, we would advise that you keep to the following websites that provide accurate and up to date information:

roycastle.org

cancerresearchuk.org

macmillan.org.uk

If it is lung cancer, treatments have improved greatly over the past decade and research is ongoing. I hope you have support for yourself especially as you are a carer for your husband.

If you can, have someone with you at the consultation, so they can support you and listen to what is being said, often at any medical appointments, we do not take everything in and sometimes come away with more questions than answers.

It is understandably a worrying and anxious time for you until you have some answers. Do reach out to others for both you and your husband during this waiting time for a diagnosis.

This link is to Carers UK and their helpline number is 0808 808 7777 Monday to Friday 0900 -1700 carersuk.org/help-and-advic...

This is the helpline for Dementia UK 0800 888 6678 and their website is :dementiauk.org/information-... apologies if you are already in contact with both of these links.

You are very welcome to contact us after your appointment if you would like to discuss anything, our ask the nurse helpline freephone number is 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email us at [e-mail]

Kind regards

Ask the nurse support team

The Roy Castle Lung Cancer Foundation

[Froggy in reply to RoyCastleHelpline]

I am so very glad that I found this forum - I feel a lot more informed and assured from your responses. The information links that you sent, in particular the information booklet are excellent - I really appreciate your help and feel better placed to as questions now. I will let you know how I get on. x

[Hopeful51]

Hi Froogy, as per previous reply there are many things it could be. My husband was in similar position 2 years ago and I literally worried myself sick at the outset. There are likely more tests to be done and hopefully the wait isn’t too long for these but please be reassured this is the worst phase and fearing the worst can drive you crazy if you let it. My husband had a mass in top right lung also and until they could do all of the tests including biopsy and PET it was a long wait. In the end it was lung cancer but he was able to have lobectomy surgery without need for follow up chemo etc. my point in posting is that it is understandably a worrying time but don’t fear the worst and if you read the many stories on here you will see that there are many positive stories for lung cancer now too. Good luck 🤞

[Froggy in reply to Hopeful51]

Hi Hopeful51 - thank you for your response, it helped me a lot. That was a fantastic result for you and your husband! It is worrying, yes and I am hoping for a good team to sort me out. I’ll let you know how I get on at my appointment which is late afternoon tomorrow x

[JanetteR57]

Hi Froggy, Can imagine how worried you and your husband are - as any disruption to his routine will be unsettling as well as him being concerned for you.

A chest x-ray is the most common image used for so many conditions - often referred for by a GP, taken in an A&E, urgent care or other hospital setting - even if in a road traffic accident, chest x-rays are taken to see what's going on internally before proceeding with other trauma treatments.

Even if things may appear abnormal in an image, it often still isn't enough to determine whether what is seen is infection, inflammation, scarring on the lungs from previous infection or something else. Many can be clearly interpreted and the majority do not turn out to be anything serious. Others are sent on, as you were, for a more detailed image by CT which shows much more detail and as yours was of the abdomen and chest, it will show more of the body too. The appointment booked with the respiratory/chest clinic is likely to explain your results to you. The consultant may then request further tests or imaging dependent on what has shown up on the images.

Try not to get ahead of yourselves - there are several things that can show on imaging that may not be 'sinister' as they describe it yet still need some treatment/intervention by a respiratory departments.

try not to worry. I had a chest x-ray in A&E in mid October and it showed a 'lesion' in my left lung - I'd gone there due to strange symptoms for me but I was sent home with steroids/antibiotics. The next day I was readmitted as I then had a swelling on the left side of my neck and kept in for a week, misdiagnosed as 'uncontrolled asthma' but it didn't feel like any asthma I'd had. I was booked in for a CT about 10 days later but the scanner broke down and had to wait weeks for my CT. That showed a 'large mass' and I was sent for a PET scan then saw a consultant (surgeon) who explained that it needed removing with half my left lung. I had surgery 16/12 and learnt on 13/1 that it had been lung cancer. I was told that chemotherapy didn't really work for my specific type so to get on with my life. I was back at work, swimming and active just a few months later and have been ever since. I got involved with lung cancer research in 2013 and met many survivors who had done well long before today's 'better' treatments despite everything I read at the time seeming like doom and gloom. Never give up and try not to google - so much on there is outdated, irrelevant or from other populations/countries/healthcare systems.

That was in 2011. Since then things have changed on every level for lung cancer with many new treatments available and more traditional treatments all having changed including lung surgery now being done mostly by keyhole.

At the moment, you are in a clinical pathway as they call it being followed up for the next stage - which happens in so many other conditions/symptoms - yet somehow how heads get ahead of themselves when it's our lungs and we seem to veer towards the worst scenario... hang on in there. Good luck with your consultation tomorrow. thinking of you both.

[Froggy]

Thank you Janette - sorry to hear that you have been through the mill - I love your positivity! I am feeling eager to find out what’s going on and what we can do about it now. The imminent tests are a concern for me - I had a bronchoscopy years ago and it left me quite traumatised for some reason and the thought of another one scares me. I know it will probably have to be done but the thought of it!

I hope that you are doing OK now. Are you having any further treatments for it? x