Scared newbie

[Rubyjean28]

I was poorly all over November and December with a terrible cough and flu like symptoms. Contacted the Dr's numerous times x rays show pneumonia. A and e visit as in agony on right side, 2nd xray was worse antibiotics not working. CT scan the following day to be told 28th Dec I have a large mass lung cancer. Well to say my world ended is probably an unbderstatment. I have had an mri, just waiting on pet which is next Friday, biopsy Monday praying for answers by the 19th. I'm obviously really struggling to sleep, 14 hours in 5 days, I can't switch off. I have an amazing amount of love and support and I am extremely lucky. But I'm absolutely devastated. I can't be alone as I'm a worrier and overthink everything. I honestly feel like I'm just living in a nightmare. I've come here as I am wanting to speak and gain advise from people in the same situation as me xxx

[JanetteR57]

Rubyjean, it's perfectly natural to feel scared or even terrified when the words 'lung cancer' are spoken. I felt the same when I turned up in A&E mid October and a lesion was found on my chest x-ray but I was discharged with antibiotics and steroids only to be readmitted the next day and kept in for a week, misdiagnosed as 'uncontrolled asthma' but didn't respond to any of the medication apart from steroids. the planned CT was cancelled as the scanner had broken down and parts had to be ordered so it took 5 weeks to organise a CT then get the results then sent for a PET scan then an appointment with a consultant. He told me the large mass had to be surgically removed then sent away (didn't have a biopsy) to determine what it was and any further treatment.

I'd had my 52nd birthday 2 weeks before I turned up in A&E and had been fit and well before that. I had surgery 16/12 and came home 22/12 but learnt on 13th January it had been a 7cm tumour, mucinous adenocarcinoma - a type of non small cell lung cancer. That was in 2011 and I was back at work and swimming by the end of March that year.

Since then the treatment landscape for lung cancer, the research undertaken and knowledge gained globally has changed beyond recognition. Every type of treatment has changed - even the surgery I had (open) is now mostly keyhole. The majority of UK patients are detected when surgery isn't an option however there are many other treatments including radiotherapy, chemotherapy, immunotherapy and targeted agents with many patients given a combination of treatments. I've been involved in research since 2013 and met many who have survived years, even decades before some of today's new treatments were around so don't give up. There are many different types and mutations hence so different treatments.

The stage you're in is one of the hardest to handle as your mind will be racing, your imagination running riot, you've likely googled and scared yourself to death and feeling more alone than any point in your life. You're not alone - forums like this exist, the major UK lung cancer charity, Roy Castle lung cancer foundation operates a nurse led helpline and has information on every aspect of lung cancer including investigation types. Macmillan charity also has a nurse led help Line and support materials online and in print like Roy Castle foundation. Specific types of lung cancer dominated by never smokers with specific mutations also offer information and support but until your biopsy results are known, this information won't be available.

There's little point at this stage reading everything as patients often get quite different treatment dependent the result of the biopsy and clinical need so some aspects may not apply. However just being aware there are resources there in plain English, many areas offer support groups for patients and patients should be allocated a clinical nurse specialist (lung CNS sometimes referred to as a Macmillan nurse if funded by them) to support the patient can be a comfort to access when you feel able.

Once they have all the results from the various imaging, biopsy and other tests that may have been done, they will be discussed by a multidisciplinary team and a lead consultant allocated to you and an appointment made to discuss results and treatment plan.

I have always found keeping myself busy, distracting myself, immersing myself in something else helps keep my mind off things but am not for one minute, making light of your justifiable concerns..... hang on in there - there is always hope.

there are many treatments even if public awareness including some GPs/family doctors lags the reality by several years if not decades. wishing you luck as you start out on this experience that so many of us have trodden before you....

roycastle.org/about-lung-ca...

[Rubyjean28 in reply to JanetteR57]

Thank you so much for all the information I really do appreciate it. Yes first instance was google which then led me down a rabbit hole in which I spiraled. I am trying to keep busy but it's the waiting which is agony atm. This forum is the only thing that is helping me at the minute and I am so truly grateful for every single person that has reached out to me. Thank you again xx

[Danni54]

Hi Ruby Jean. Just to say that you are not alone and this forum helped me sooo much and you will find care, support and understanding here . Jeanette is absolutely right in everything she says . I had been ill for a 15 month's, got pneumonia and a tumour was found on my upper right lobe . It had been on an Xray for 15 month's but the Pain Clinic omitted to tell anybody so it was a huge shock . Adenocarcinoma. I really feel for you and send you a hug. I had a Lobectomy and have been in remission for 5 year's. The Lobectomy was keyhole so wasn't as frightening or as painful as open and the scarring is minimal. When I was diagnosed I shut down and focused all of my energy on getting through the biopsies, scan's and the Lobectomy. Please keep telling yourself that you will get through this and any time you need support come here. The Roy Castle Nurses are wonderful as are Macmillan.

Take care and if you can please let us know how you get on. Thinking of you.

Love and hugs, Danni x

[Rubyjean28 in reply to Danni54]

Thank you so much. I am so grateful for this forum it is amazing how much it is helping me. I don't feel alone anymore, and when I do this is the first place I come xx