At the moment still in shock. I’m an artist and I’m used to looking at other people and seeing them however I obviously haven’t seen myself. Outwardly I appear I think as I always have done but obviously I haven’t been looking closely enough at my health.
I have not had any symptoms and when I was referred to a lung specialist following on from a scan of my bladder and then upper abdomen I was shocked to discover I had lung cancer and liver metastasis. I have just had a pet scan and the bronchoscopy is scheduled for next week. I am really nervous about this as I am claustrophobic.
I have spent the last 2 years looking after my husband who has been desperately ill and is now in hospital suffering from the last stages of auto immune encephalitis. It has been an absolutely dreadful time devastating for our family and I suppose I just stopped looking after myself.
I am finding it very difficult seeing the woods from the trees.
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Artstars
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you have had a rough time but, there is so much support out there, a lot of knowledgeable people on this site to help you. Personally I felt better once I had a treatment plan.
Sorry to hear you've had such a hard time of it. You will find help and support here, I am sure.
I had a bronchoscopy in December. It's not something I'd take up as a hobby (!) but the fear of the procedure and the worry leading up to it was altogether worse than the actual event. I am also claustrophobic - I don't like the CT/MRI scans at all - but the bronchoscopy didn't trigger that for me. You will be sedated and I am told a lot of people barely remember the procedure. It's 20 minutes or so and I had no after-effects. I hope that helps a bit.
It is a very very tough and difficult time for you especially so with your husband being so unwell. Try to be kind to yourself. Lung cancer is so difficult to diagnose so most people aren’t diagnosed when it’s just in their lungs. Easier said than done but try to just take things one day at a time.
As said before having a treatment plan helped me too, hope that you get yours soon. It’s worth contacting the people who are doing the bronchoscopy prior to the appointment to explain about your claustrophobia as I know some people take sedatives in the days prior to it and a plan can be made in advance of the day that is right for your needs. They will be used to dealing with people who are claustrophobic.
I think it’s best not to google lung cancer as everyone’s situation is different and lots of the information out of date. The Roy Castle website has some good booklets, which you might want to read.
I like to write questions down before my appointment. Also useful to take someone with you to your appointments, as you will get support and also probably both remember different things afterwards.
I don’t know where you live but Maggies Centres are good for providing support. Also the Roy Castle helpline. It’s difficult enough dealing with your own health and you are dealing with your husbands too, so do reach out for support. People like to help xx
Shock is a natural reaction to such news and investigations as is looking for a reason or somebody/something to blame - but stop that if you can. Be kind to yourself. treat yourself as if you would a best friend..... as you say, it's been tough caring for your husband and most of us neglect our own health/needs when caring for others.
I've had 5 bronchoscopies over the years - the first when I was 13 when they suspected I had a collapsed lung due to the violent cough I'd had for around 6 weeks and had to have time off school. The others have been since my lung cancer diagnosis in January 2011 when I had strange symptoms for me (but not usual for lung cancer) and a 'lesion' showed on my left lung after a chest x-ray was taken when I went to A&E. It took weeks for me to get a scan at all - I'd been hospitalised and kept in a week and misdiagnosed as 'uncontrolled asthma' but didn't respond to any medications. I had to wait for the cough to subside (sudden onset cough) through inhaler/steroids then a CT was booked, but the scanner broke down and parts had to be ordered.... long story short, I eventually had CT then PET scan then saw a consultant who told me I need to have the large mass removed from my left lung with a portion of my left lung then determine what it was and any further treatment needed. it was removed and turned out to be a 7cm tumour (adenocarcinoma - a type of non small cell lung cancer). I didn't have any further treatment but a few years later when I had similar symptoms, I had a bronchoscopy under sedation, then another under general anaesthetic at a different hospital a few years later and a couple under sedation (spray at the back of the throat) to investigate what was going on in my lungs. Apart from 1 which was quite uncomfortable, all were tolerable especially as I knew they'd be finding clues/results from all the various tests that could help with any treatment.
I've been involved with lung cancer research since 2013 and the treatment landscape has changed beyond recognition with most surgeries now being keyhole rather than open, some now having treatment to shrink the tumour before any surgery with immunotherapy and/or chemotherapy, dependent on its location and whether spread or not. Others are offered a combination of treatments that can be from immunotherapy, targeted agents (to treat specific mutations within some non small cell lung tumours), chemotherapy, radiotherapy, ablation (SABR - a type of radiotherapy).
I'd say if you tolerated the PET scan (usually done in a CT scanner rather than the more claustrophic/noisy MRI scan), this is a different experience. You'll usually be sitting up on a clinical bed before lying down - and a spray is inserted into the back of the mouth to numb the area where the thin tube will be inserted. It's usually over and done with before you know it.... and all the results will be gathered, examined and discussed between a multi disciplinary team before you see a consultant to explain what is going on and which treatments may be best. They often use the bronchoscopy to do a biopsy or bronchial washings/brushings to learn more about the detail to determine the best treatment. Many hospitals have a patient information sheet/leaflet about the procedure but in case yours hasn't sent one, this information may help. patient.info/chest-lungs/ch...
Explain to the nurse on duty that you feel quite anxious about the procedure and that you have caring responsibilities so they understand your situation. Good luck.
So sorry to hear you are having a bad time, i lost my husband 11 years ago to the same disease auto immune encephalitis, it was so difficult, i neglected my health too and 3 years after i was diagnosed with carcinoma & sarcomatoid lung cancer. i had top lobe removed. I brought my i pod music with me to listen too when i had my scans, explain that you are claustrophobic and i am sure they will put you at ease. Hope all goes well for you .
I'm sorry you're here on this site Artstars and to hear about your husband's illness too. That's a lot for you to shoulder.
I hope you get some reassurance from everyone posting on this site. There are some brilliant treatments now which are transforming the outlook for lung cancer patients. My husband has just passed 4 years since diagnosis (stage 4 NSCLC) and, after the initial treatment, is living a very normal life.
Welcome to the forum. I am sorry to hear about your diagnosis, this will be a difficult time for you. Support is available and it is good that you have reached out. I can see from the other replies that you have already had some good advice and support.
I can understand your concerns about the bronchoscopy, especially as you feel claustrophobic, but as others have indicated if you let the staff know your concerns they can help you through the procedure and sedation can be provided.
Once you have a treatment plan, you will be allocated a lung cancer nurse specialist, they are a great source of advice, information and support. In addition you can call out nurse helpline (details below)
You could try this website from Cancer Care Map which provides services of support that are local for you: cancercaremap.org/
We have a range of support services, from one to one support to online support groups through zoom , if you are interested in any of these you can register through this link: roycastle.org/help-and-supp... Or by emailing Ellen.Knapp@roycastle.org
Our campaign section provides encouraging accounts from those living with lung cancer: roycastle.org/campaigns/
The Maggie’s centres are a great place to have a cuppa and a chat, they provide practical, financial and emotional support; maggies.org/
I hope some of this is helpful, but if there is anything else you would like to discuss you can email ask the nurse at lungcancerhelp@roycastle.org or why not call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600. Our nurses will be able to chat through your worries
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