Need advice on moving forward from getting CT scan re s ults where to get feedback advice and tips to de stress breathing exercises music

[Enair]

My wife diagnosed with lung cancer its in liver as well waiting for another CT scan and a bone scan after that a biopsy and consultation we are devasted and scared it's the not knowing she never smoked and Is 67 years old any advice?

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Enair

Welcome to the forum, and so sorry to hear about your wife's diagnosis and how difficult and stressful this must be for you both.

It is understandably a shock and a lot to take in. You may find that you both have intense emotions that come in waves, it does pass and once you have more information and start treatment this eases to a degree.

The waiting is the worst part, the worry and anxiety of not knowing the full results and what treatment plan will be offered.

Unfortunately, anyone with lungs can get lung cancer and thankfully lung cancer treatments have improved in the past 10 years, with new therapies of immunotherapies and targeted therapies.

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

We have many information booklets form diagnosis, the different treatment options and living with lung cancer: roycastle.org/help-and-supp...

You may find this link helpful from Macmillan support on how to cope with your emotions that a cancer diagnosis brings: macmillan.org.uk/cancer-inf...

You may find the link to this app for those with cancer on guided meditation: cancercaremap.org/care-prov...

The Cancer Care Map can provide information on local support in your area.

The Maggie's centres are a great place for those with cancer and their carers, to have an informal chat, and provide emotional support, you can find your nearest one through this link: maggies.org/

We have online support groups through zoom and if you are interested in registering for this you can do so through this link: roycastle.org/help-and-supp...

If you are looking anything up online, we would advise that you look at the following, accurate and up to date websites of:

roycastle.org

macmillan.org.uk

wwwcancerresearchuk.org

Please do not hesitate to contact us if you would like more information or to discuss anything, 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

You will find lots of support and encouragement from other members on the forum.

Kind regards

The Roy Castle Support Team

[Goldmoon]

Morning Enair,

So sorry to hear of your wife’s diagnosis, I was diagnosed April 2021 and I too am a non smoker and was really shocked at my diagnosis too.

I’ll keep it short but after many tests lung biopsy etc. I was told I could start target treatment therapy, a drug called Tagrisso, (it is a tablet you take daily),it does what it says and targets the cancer not other cells. I started this in July 2021, It does have side effects, I got horrible facial skin rash but I stopped tablets and was given cream and medicine, this cleared it and I restarted tablet.sorted it. I then continued with Tagrisso. It also affects nails and hair thins but I’ve not had terrible side effects.

I have had good scan results and cancer has shrunk but the main thing is it has restored my appetite and energy levels. Before being prescribed it I was quite poorly, fatigue, breathlessness and couldn’t eat, lost so much weight.

I know what you’re going through I think it’s the shock and fear of suddenly being in the Hospital system.

You are obviously a lovely caring husband and that will support your wife, I too have a good husband and family.

The early days were hard but keep going Enair and your lovely wife there are so many positive stories on here once you know a treatment plan you can research (on here) not google too scary.

I’ve been told my cancer is terminal but I mentally block that and just

appreciate each day while the treatment helps.

I listen to “Pure Rasa” on YouTube, she does many guided meditations,

she does healing ones too about 30 minutes long. I find her amazingly, I never fail to fall asleep when listening, no matter how stressed or ill I have felt I seem to wake up calmer too.

Did I say I was keeping it short! sorry but I so empathised with your post, I send you, your dear wife and family love and kind warm thoughts, one more thing I will say Enair is the word acceptance, it won’t come yet but as the shock subsided I thought I can’t change this I have to accept. I don’t mean give up by any means keep going but anger and stress won’t change things,

Really am going now! thinking of you,

Barbara

[Enair in reply to Goldmoon]

Best of luck to you Thanks for the kind words

[JanetteR57]

Always a shock and as you say, more so when never smoker as we're not aware that anyone can develop lung cancer - I was 52 at my diagnosis and a never smoker - that was 11 years ago. Things have changed so much since then in terms of research, knowledge and treatments but the many tests needed now (which all take time and can add anxiety whilst awaiting results) are very necessary to ensure the most appropriate type of treatment as treatments are personalised dependent on characteristics of the cancer that can often only be determined by biopsies as well as scans... I found distraction helped me - it was 2 months between turning up in A&E and the 'lesion' being found in my lung and treatment and over a month to even get a CT scan as the scanner had broken down and due to never smoking and misdiagnosis as uncontrolled asthma meant little urgency was put on this. Thankfully 11 years on, I'm still here so try not to panic.... Roy Castle lung cancer foundation has a lot of help and support via its website, phone line, online support groups, information to download, read, talk through and offers help to not only the patient but those affected (relatives/carers)... resist the urge to google as so much data on the internet is outdated and inaccurate so trusted sites (Roy castle is used by healthcare professionals as well as patients) are invaluable and offer help on all aspects - including mental health, breathing/breathlessness, eating, travelling, working, financial aspects, and explain every type/mode of treatment.... thinking of you both and hoping you find the answers and support you need whilst you're waiting for the treatment plan. Things do become easier once the results/answers are known and treatment starts as our imaginations can run riot thinking of the 'what if' rather than waiting for the 'what is'.... good luck.

[Enair]

So glad you are coming well my main fear is being told it went to the liver I have to stop checking google because it sounds awful once in liver Can I chat with them because I am in Canada and thought it is onl for UK

[Hidden]

Hello Enair

Sorry to hear about your wife, I have Stage 4 lung cancer that's spread to lymph nodes and liver. It very hard to stay positive I know, but so many options for treatment and if you look on here people living long lives after cancer.

Relaxation helps me a great deal from music to meditation (just closing my eyes and thinking of things that make me happy)

There's a free app called White Noise Lite, various sounds from crashing waves to Tibet bells.

Calm another free app

Very Well is a great site with breathing exercises.

Cancer Research have so much information about Relaxation and breathing.

Roy Castle Lung Foundation.

Be wary because some apps are not free and can end up costing a far bit.

One to ask on here is Jeanette she has quite a knowledge of treatments, trials etc.

Hope this helps

This is a great site glad you found it.

Best wishes

Pam

[Enair in reply to Hidden]

Thank you, so you are getting treatment now? My wife is awaiting another CT scan, an MRI, and a bone scan. Probably weeks away. Then biopsy, after that a consultation. It is the unknown and long waits that are making her more depressed, and scared. She is not eating well I will tell her about the apps you told me about Thanks again, and please stay intouch, I appreciate your help

[Hidden in reply to Enair]

Hello Enair

I was diagnosed with lung cancer stage 4 last August, found by accident from me seeing GP with bowel problems. Further tests revealed it had spread to lymph nodes and small area of vertebrae.

Then like your wife I had numerous tests, CT, MRI, PET scan and bone scan. Unfortunately PET scan showed small spot on brain which they assured me could be zapped! Which it was.

I've had 7 immunotherapy sessions which unfortunately didn't work, very upset. Now just started chemo, only 5 sessions.

It is like a roller coaster but things will move quickly, they don't mess around.

I've lost my appetite too, so just eat what I can like soup and smooth food, the lack of sleep for me is terrible.

Please stay in touch Enair and try to stay strong for each other, it's very difficult I know.

Ask as many questions on this forum, lovely supportive people.

Best wishes

Pam

[Enair in reply to Hidden]

She seems to like soups now, tea, but her usual love for chocolates, country music, she lost interest only thing that helps her depression is visiting the grandkids, the family is now seeing us on weekends, more regular than before the devasting news She keeps asking the family Doctor what here survival chances are, he says you have to wait for the cancer unit to advise. So you are continuing your treatment?

[Hidden in reply to Enair]

I quite enjoy soup, yoghurt with banana!

Denzie who posts frequently on this forum has some good advice, she messaged me and said 'think of beautiful things that make you smile' that's my grandkids like you.

I love country music are you in Canada, I'm in dull rainy Manchester UK!!

Denzie who I've mentioned has gone 11 years since cancer diagnosis and back then not as many treatments and drug trials. Nobody knows how long I've got and it makes me sad. I've a good supportive husband and two lovely strong boys.

I go in 4 weeks for next chemo, I'm at Christie's in Manchester.

Take care Enair and love to your wife.

Pam

[Enair in reply to Hidden]

Take care, all the best to you. Yes I am in Ontario, Canada, 1 hour from Toronto

[sassassas in reply to Enair]

Hi EnairI'm so sorry to hear about your wife and what you are all going through. My husband was diagnosed with stage 4 NSCLC a year ago.

I saw your comment about your wife asking about her prognosis and I can really relate to this. My husband desperately wanted to know his and asked every medic we saw (and we saw a lot of different specialists as they tried to work out where the primary was!). Every one of them said "I can't say until we know more" - until it was confirmed as lung and we met with his oncology team. We really respect our oncologist but this was one thing that I don't think he did very well - he told us the standard survival statistics (fair enough, my husband did ask!). It was devastating of course. The reality is that the statistics are out of date - they are at least five years old for starters. Five years ago, the targeted drugs and immunotherapies just weren't widely used (and new drugs have been licensed since). One of the "good" things about lung cancer is the amount of research done in the last decades that has successfully led to brilliant drugs. My husband is treated with immunotherapy, and data from the 5 year follow up has been published recently - for his sub-type of NSCLC, patients on the trial who had 2 years of the drug had a 5 year survival rate of 80%. Whenever we worry about his future, we hang onto this.

Our oncologist was totally honest with us, but what I now know is that they cannot predict an individual's prognosis as they can't predict who will respond to the treatments. I hope this is of help to you - some people want to know and some people don't, and clearly your wife wants to know, but I hope its helpful for you to be able to have that wider picture.

Best wishes to you both,

Sarah x

[Enair in reply to sassassas]

This is helpful, thank you, and best wishes

[Enair in reply to Hidden]

Monitoring her oxygen does not go higher than 95 and some mornings 93 family Doctor checked her lungs and said they seem clear, I do not understand if clear why oxygen not better another question for you, are you in any pain? She only complains of lower stomach pain the odd time