Newbie

I’m new here I have only jus been told today that I have lung cancer I’m awaiting to see an oncologist on Thursday, to say my head is all over he place is an under statement.

[janeg4]

Hi Confussed79

I'm sorry that you have received a lung cancer diagnosis and at this stage you might be in a state of shock . You've joined a great forum where you will find support, advice and answers on your cancer journey.

If I can give you some hope that this diagnosis is not a death sentence and that there are many treatment options available to you nowadays.

I personally was diagnosed with lung cancer September 2012 after almost one year of experiencing symptoms ,I had surgery and chemotherapy which was successful and I have been living a full cancer free life for almost eight years now.

I send you my best wishes ,take care and be kind to yourself as you travel along this road ,come here to share ,rant ,cry you will find respect and understanding .

Jane

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Confussed79

Welcome to the forum and sorry to hear you have been told you have lung cancer. It is completely understandable that your thoughts and emotions will be all over the place from the diagnosis to the unknown future. It is a very frightening time not knowing what will happen next, hopefully the information below will be helpful for you and as janeg4 has said, the forum is a great place of support and encouragement for whenever you need it.

I have placed this link below from our web site which explains each stage from investigations, diagnosis, staging of cancer ,what questions to ask at your appointment and what possible treatment options may be offered.

roycastle.org/app/uploads/2...

On page 48 of the booklet, you will find a list of questions you may wish to ask at your appointment.

You will be allocated a lung cancer nurse specialist, who will guide and support you through this, if you have not been appointed one, you can ask at your appointment on Thursday or through your GP.

This link directs you to our information on living with lung cancer: roycastle.org/help-and-supp...

We have a range of information booklets for each treatment options which can be found here:

roycastle.org/help-and-supp...

There are many inspiring stories of those living with lung cancer and their journey in this, this can be found under our campaign section which I have placed below, you may wish to read especially the one titled 'Like Me':

roycastle.org/campaigns/

If you are looking things up online, we would advise you to only view the sites that are accurate based on evidence based practice, research and information, such as:

roycastle.org

cancerresearchuk.org

macmillan.org.uk

The Maggie's centres are based in most cancer care settings, they can advise on practical, social, emotional and financial support, normally you could pop in for a chat, however due to Covid-19 this is not possible at the moment but they are still taking phone calls on 0300 123 1801 and there web site with your nearest centre and their information can be found on this link:

maggies.org/

We have set up a new service called 'Keep in touch' to provide support during the isolation of Covid-19, this is where one of our dedicated team members will telephone or email once a week to provide support or advise where to support this. If you are interested in this you can register from the details in this link:

roycastle.org/covid-19/info...

If you wish to discuss anything you can either email us at [e-mail] or call our freephone nurse led helpline number on 0800 358 7200

All the best for Thursday.

Kind regards

The Roy Castle Support Team

[JanetteR57 in reply to RoyCastleHelpline]

Support is also available through Macmillan who operate helplines and advice on many aspects as there are whole parts of the country (such as where I am - the British Midlands) where there are no Maggie's Centres. Roy Castle operates some patient support groups around the country so if you chatted to them or had a look on their website you may find there is one in your area that you could contact even during lockdown for telephone support. Services and treatment pathways have been disrupted as a result of covid 19 so some published guidelines or 'usual' processes may be quite different but your hospital/consultant will be able to advise you what the situation is locally. good luck.

[JanetteR57]

Welcome to the forum that most of us would not want to join but are pleased we do! It is frightening and scary but try and stay away from the internet - there is a lot of outdated and inaccurate information on there and no way of knowing what is fact and what isn't. I'd urge you to access trusted information websites such as Roy Castle as it's information is regularly updated, contributed to by clinicians and reviewed by a patient panel for readability and suggestions on issues that they found important when diagnosed/treated. My diagnosis was in Jan 2011 after having surgery to remove half my left lung. Thankfully I was back at work and swimming 3 months later. I had to seriously develop qualities such as patience, fortitude, resilience and gratitude. One thing I had to accept was the loss of control and a lot of waiting - waiting for results, waiting for appointments, waiting for explanations and decisions, waiting for tests.....for those of used to being independent and having some sort of 'control' in our lives, it can feel very uncomfortable. In recent years I've been heavily involved in lung cancer research and can only stress that these waits and tests have increased due to the many treatments now available but these depend on gathering the specific evidence from the patient from a whole series of tests. So hang on in there, be prepared for quite a roller coaster of emotions and find some distraction techniques for the inevitable waits and delays - made worse by the current situation. take care.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Confussed79

As JanetteR57 has said, the Roy Castle website has a list of support groups in the UK, this is the link:

roycastle.org/help-and-supp...

However this is our current information on the support groups:

'We know that many local lung cancer support groups will be suspended following the government advice that people who are immunocompromised should avoid social contact. This is the case for most people who are having or have had lung cancer treatment. We are also aware that many of the group facilitators are Lung Cancer Nurse specialist who will be prioritising essential NHS services. We are currently looking at whether we can provide phone and online groups, please monitor the website for further information. If you need information on your local services please check with your lung cancer team.'

Obviously due to the current lockdown the support groups are not active at present, meanwhile anyone can call our freephone nurse helpline on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600 or alternatively can email us at [e-mail]

Kind regards

The Roy Castle Support Team

[JanetteR57 in reply to RoyCastleHelpline]

Thanks for the update on the groups. I'm aware that some patient groups (not specifically lung cancer) are keeping in touch with one another by phone, Skype as individuals to support one another especially those more isolated than others for a bit of moral support rather than medical information. hope you can find some help for you...

[Doppydan]

Hi hidden I diagnosed with lung cancer last December 2020 just before Christmas had pet scan Christmas eave other test straight away after the holiday more scans ctscan then mri scan later met surgions at guy's operation February six months scan showing all at the well pleased so it not a death sentence best of luck