Worries

[Burnster17]

Some months ago my wife was diagnosed with a brain tumor and stage 4 lung cancer. What now, what does the future hold. Be positive, we have been together since we left school, so 30+ yrs. She got through breast cancer 13 yrs ago, and now this!. 😢. Its manageable they say, but what time do we have left, I try to be normal for her, for us both but it's tough, perhaps I need to talk.

[jacic64]

So sorry, cancer is tough on the carers as well as the person with it. There's a really good lung cancer support UK group on Facebook which is brilliant for helping with positivity & hearing how others cope with everything. I have lung cancer & find the group so helpful.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello Burnster17

So sorry to hear about your wife's cancer. This must be very difficult for you both. Support is available, so it's good that you have reached out,

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... Or by emailing [e-mail]

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/

Or why not call our helpline for a chat with one of our nurses.

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. This link takes you to the new diagnosis information P48 has suggestions on what to ask your medical team. ManagingYourLCDiagnosis_2019Booklet.indd (roycastle.org)

You might find this leaflet helpful: roycastle.org/app/uploads/2...

Other websites you might find helpful include: braintumoursupport.co.uk/

cancerresearchuk.org

macmillan.org.uk

For carers' - cancersupportscotland.org/

I hope some of this is helpful, but 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

Wishing you both all the best in your journey

The Roy Castle Support Team

[JanetteR57]

Sorry to hear about your wife's diagnosis - does she have a primary brain tumour or has her lung cancer spread to her brain (metastasis)? Treatments may differ dependent on which situation.

Having got through one cancer together, I'd say that's evidence of your love and support for her. If it's manageable as they say, that suggests treatable and there are many more treatments now for lung cancer even if it has spread than when I was diagnosed in January 2011. I was fortunate to have surgery to remove mine and half my lung and I became involved in cancer research and met several patients who had survived or were living with lung cancer before many of today's more effective treatments. Never give up.... You're right in saying it would be good to talk - Macmillan and Roy Castle lung cancer foundation both offer nurse led helplines and as others have said there are closed Facebook pages for lung cancer patients in the UK. It's really important you have somewhere to talk or have a respite for yourself in order to support her.... many areas have independent cancer support centres - where I live does not have any Maggie's Centres (West Midlands) but some areas do have other centres. These can be a welcome source of support. Many hospitals also have a cancer support area with information or access to volunteers or nurses who may help you both.

Nobody can predict how long somebody might have as patients react differently to the very different treatments they're given and many are in different states of health to start with.... I was surprised when I first became involved in research to meet patients who were 15, 18 years out and one is now 34 yrs out also involved in supporting others. In recent years and increased involvement, I've met more living with stage iv lung cancer and even if their tumour has become resistant to treatment, another treatment has come along that they can try or a combination of treatments....

having lost 2 sisters and a niece suddenly and unexpectedly (none from cancer), I'd say make the most of every day anyway - none of us has a life expectancy guarantee - even if we think we do - and be there for one another.... sounds as if you're soulmates if together since school. thinking of you both.... and wishing you luck on what can be quite a roller coaster.... for which it's better to be prepared for the ups and downs together if you can x

[Burnster17 in reply to JanetteR57]

Hi thanks for replying, she had lung cancer that spread to the brain that caused a tumor. She has since had the radio therapy to reduce the tumour, however prior to the op to remove the tumors from her lungs she had a second pet scan and it showed it had spread to her right lung and ribs but only small. So now a further biopsy is to be done and then alternative therapy to try and keep it under control. Fingers crossed. X

[JanetteR57 in reply to Burnster17]

Fingers crossed for another treatment to help her - for many there are often different treatment types and agents even if spread beyond the lung. for now enjoy your xmas and new year festivities and share your time together until you know what is, rather than wasting precious time being anxious fearing the 'what if'.... good luck to you both.

[Denzie]

When I was diagnosed with Lung cancer and told I only had a few months to live even with the most aggressive treatment I was devastated. Through patient to patient webpages I met a man who was in his 12th year surviving stage 4 lung cancer. I cried because I didn't know that it was even a possibility.

His lung cancer was found because his brain metastases caused cognitive issues. He was in a clinical trial for stereotactic radiation to the brain and chemotherapy. Two years later they discovered more brain mets and radiated again. Altogether he survived 17 years.

This doesn't have to be an automatic death sentence. That said plan for the worst and hope for the best. Do talk, she probably shares the same fears. You both need to express them. The Maggie's Centers others mentioned is a great place to start if there's one convenient to you.

[ConnectRoyCastle Administrator Roy Castle]

Hi jaqcic64

I am so sorry to hear of your wifes diagnosis, it is so hard. Roy Castle have a Carers support group which is on tomorrow morning at 10am if that is something you'd beinterested in? If so I can send you the link. We have other groups too but this might help you.. Just send me an email.

[e-mail]

[Cockailschemocancer]

I’m sorry to learn about your wife getting cancer twice is shit … there are so many positive stories of people thriving with lung cancer head to Roy castle lung cancer foundation and you’ll find loads. Also statistics are outdated so putting a time on things now is probably dated. Find the positive stories of people who are 5+ years.

Also the important part has she been checked for mutations as this can drive alternative treatment options.

There are also loads of positive thriving people on Instagram to follow - have a look at me and who I follow and you’ll find loads of incredible ladies! Xx

@CocktailsChemoandCancer @4theloveoflungs