diagnosed with adinocarcinoma two weeks ago, and waiting for biopsy results from mediastenoscopy. I first went to my GP last December with symptoms, and although I have had X-ray and scans I’m quite angry it has taken this long to begin to get a diagnosis - approx 9 months.
I also found out that the patch on my lung was noted 5 years ago during scans for breast cancer but was not followed up!
Now awaiting results to stage and get treatment plan.
Has anyone had similar experiences?
How awful! It's truly dreadful that they missed it so long ago & then are taking very long to diagnose & determine treatment. Sending warm & encouraging thoughts for a swift diagnose & best treatment with best outcome possible!
oh my gosh, sorry to hear this! It’s all been very quick in my experience for my dad but he is st 4 advanced. Hope it progresses ASAP for you now x
Dear Bluyonder
Welcome to the forum and so sorry to hear you have lung cancer and the journey you have had so far with this. Understandably, this must be quite frustrating and difficult for you and your loved ones.
Lung cancer treatments have improved in the past 10 years with new treatments of Immunotherapies and targeted therapies, which are dependent on specific cell mutations/proteins that may be present from your biopsy.
You should have a lung cancer nurse specialist allocated to you, they are a great source of advice, information and support. If you do not have one this can be requested either through your GP or consultant.
All our information booklets can be found on this link: roycastle.org/help-and-supp...
These range from diagnosis, staging of lung cancer, treatments and living with lung cancer.
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:
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...
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/
Please do not hesitate to contact is if there is anything else you would like to discuss, you can email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600
Kind regards
The Roy Castle Support Team
Sorry to read of your situation -sadly it is quite common.
My diagnosis/treatment was delayed months and I'd been to my GPs in the preceding years many times and sent home with inhalers, steroids and antibiotics. I took myself to A&E in the Oct where the 'lesion' clearly showed on a chest x-ray. the ER doctor wanted to discharge me after I'd finally been seen (I was there over 7 hours on a Friday night) with steroids/antibiotics (again) but I insisted on having the chest x-ray results before I would leave which is how I learnt about it.
The next day I was readmitted by ambulance and kept in for a week - treated as 'uncontrolled asthma' but didn't respond to asthma meds (I'd had childhood/early adult asthma but not in years and it felt different). As a never smoker, 52 at the time, suspicion that the x-ray was probably inflammation or scar tissue sent home for a later CT scan (when chest infection had cleared up) then phoned the day before appointment to say the scanner had broken down and they needed to order parts so took over a month to even get a CT scan. Eventually sent for a PET scan then saw a consultant who said the 'large mass' in my lung needed removing surgically with half my lung. I had open surgery in the December and in January diagnosed as mucinous adenocarcinoma. He said it had likely taken a long time to get to its 7cm size. I was back at work and swimming 3 months later.
That was in 2011. I've been involved in lung cancer research since 2013 and know others where delays in diagnosis have happened due symptoms overlapping many other conditions - including pneumonia and covid but equally know people who have gone through investigations 'suspicious for lung cancer' where it turned out to be something else. Treatments have changed beyond recognition for lung cancer including the surgery I had now being mostly keyhole.
The pandemic's impact on getting to see GPs has meant symptoms that may have been picked up by physically seeing patients hasn't happened and the pressure on hospitals has resulted in delays for tests.
There are now many treatments for lung cancer - it's much more personalised but determining the best one relies on a whole series of tests including imaging, biopsies - unlike other cancer types, precision and targeted therapies and immunotherapy are being used effectively but giving the wrong one or a generic blitz of harsh chemotherapy/radiotherapy is not the pathway anymore for many. The various departments responsible for their results are also under pressure due to staff shortages.
I know it doesn't help you but sadly trained staff shortages exist across the country for the areas (pathology, radiography) many rely on for cancer tests.
hopefully you will find a way to channel that anger into energy to help you get your treatment and for your recovery. In the meantime welcome to the forum and if you need more information really recommend Roy Castle lung cancer foundation online information - googling is full of outdated and inaccurate information but the charity keeps its information regularly updated . good luck.
Good News for Hoggy
Sharing good news!
Final diagnosis uncertain - either cured or stage 4
10 months down the line
