Scared about the outlook

[Mauver]

Hi I am new to this. I’m 56 years old and been told I have cancer in my lung the centre of my lung. It’s all very scary. Now I am waiting to have. PET scan to stage the cancer and then a biopsy. I have been telling my doctor since May that I’m not well with a cough, shortness of breath and chest discomfort when breathing in. Also have headaches still do which they thought temple arteritis but they were not sure so put on steroids which haven’t made much difference. It’s just all been overwhelming don’t know where I’m at my emotions are all over the place. It’s the waiting that is hard to know if there is anything they can do as they have said it’s incurable. Any positive words would be greatly appreciated. X

[Hidden]

Hi Mauver, the waiting stage is notoriously a very difficult time when fear and imagination take over. Once you know and have a plan in some way it is easier. Many of the lungs cancer are stated as incurable but in reality very treatable and you will find many people who were diagnosed of a stage 4 cancer 10 or 15 years ago and still doing well. Many new drugs, which although can be difficult to have at the time, are very effective. So do not despair there is hope and life. Chanie

[JackieP in reply to Hidden]

I had lung cancer 9 years ago had to have chemotherapy first to shrink the tumer as it was as lung was a adhered to my heart. My left lung was removed I’m pleased to say there have been restriction’s but lm still doing well.Plus drugs and treatments have improved a lot in 9 years.wishing you well

[VikingRoots]

Hi Mauver,

I'd echo Chanie's comments. I was diagnosed with stage 4 NSCLC nearly two years ago, and I'm doing really well, living a normal life with no evidence of disease.

It's a devastating diagnosis, but please don't be too horrified by the statistics e.g. for survivorship. In lung cancer in particular the field has been rapidly changing in the last few years; the statistics that are available are all based on old data that pre-date current treatments like targeted drugs and immunotherapy.

Also: be your own advocate, and don't be scared to politely push your medical professionals; you're part of your treatment team, not a bystander.

There really is good reason for hope.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Mauver

Welcome to the forum and so sorry to hear you have lung cancer, it is understandably a stressful and anxious time for you. It can be quite a rollercoaster of emotions that can overwhelm you, please know that there is plenty of support and information available.

Lung cancer treatments have improved greatly in the past ten years with new treatments of Immunotherapies and Targeted Therapies.

This link will take you directly to our booklet on 'Managing your lung cancer diagnosis' roycastle.org/app/uploads/2...

As others have said on the forum, many lung cancers can be treated although not always curable. The waiting has its own stresses, however some people find that gathering as much information during this time can be helpful.

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:

roycastle.org

cancerresearchuk.org

macmillan.org.uk

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/

If there is anything else you would like to discuss you can email ask the nurse at [e-mail] 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

[JanetteR57]

Welcome - the tests and waiting for results for the next tests are some of the scariest time so it's understandable that your emotions are all over the place. our imaginations run wild - I know mine did - I was 52 when diagnosed and had surgery to remove the 7cm tumour and half my left lung and was back at work and swimming a few months later. That was in January 2011 and all treatments have changed since then as well as research revealed much more about the many different types.At the moment it sounds as if you don't have a confirmed type or stage so treatment options will vary but will be based on the results and any other conditions you have. Try not to worry about the symptoms as anxiety can increase the breathlessness and give headaches and chest pains - slow deep breathing exercises may help you relax. distraction and keeping busy worked for me. I've had far worse symptoms with severe chest infections than I did with the lung cancer so try. not read anything into your symptoms as they are at the moment. I also did not respond to the medication they gave me as they misdiagnosed mine as uncontrolled asthma initially so was given inhalers, steroids, antibiotics and other meds but I did recover as others do.

Try not to google as information about lung cancer is often outdated, inaccurate and refers to other health systems like the US where a paid for medical system makes different decisions/options about treatments. There are personalised approaches in the UK based on clinical evidence so hang on in there, find something to distract yourself and focus on the 'what is' rather than fretting about the 'what if'.... good luck. roycastle.org/about-lung-ca...

[Nairnite]

Hi Mauver, I'm 51 and recently got diagnosed with lung cancer, I would agree that the first few weeks when testing, staging and treatment options are being discussed can be a rollercoaster of emotions, I certainly felt as if my life was in a spin but pleased be assured the future is never bleak, there is always hope and people that will support you through this time, I found this forum and the Roy Castle website helpful for information as well as Maggies and Macmillian for offering someone who was willing to listen and guide me through. trust it will be ok, take each step as it comes and remember that we're all here for you, wishing you well and offering support if you need it. Keep strong and take care. x

[Mauver]

hi thank you all for the replies. I now have my diagnosis I’m stage 4 squamous cell carcinoma non aggressive NSCLC. I have it in my lymph nodes in my lung and 3 ribs and a possibility in the spleen. Not the best news 😢but trying to stay positive. Anyone else have this? X

[sassassas]

Hi Mauver

I'm sorry to hear your news. I believe squamous type NSCLC is less common than non-squamous (my husband's is non-squamous). The RoyCastleHelpline will I'm sure have information about treatment options for this type.

There are plenty of people on this site with stage 4 disease and I hope you get some responses from people with the same type. It might be worth starting a new post with your new info?

Best, Sarah x