So worried and scared :-(

[Daisy_Chain_12345]

My mum has recently been diagnosed with nsclc in her left lung. We get the results of her pet and markers tomorrow. I’m so worried and scared. We are all praying that they can operate and remove the tumour even though we already know it’s been graded at T4

shes been in really good health and the diagnosis was totally unexpected but today she has started with a really bad dry cough. I’m panicking like mad that it means the tumour is growing or getting worse. I feel so tearful and scared and I know she is petrified

The fear and the panic we are all experiencing is unbearable. Cancer sucks

[Manninmaid]

It certainly does. Hope you get better news today than you are anticipating and treatment can progress asap. Glad your Mum has such great support. It makes a big difference.

Good luck and very best wishes. x

[Kimidge]

I was diagnosed Dec 2017 same diagnosis still living life to the full lots of walking at present in France try and stay positive yes and Cancer sucks x

[Daisy_Chain_12345 in reply to Kimidge]

Positive outcomes make me so happy. I’m thrilled for you and wish you continued good health xx

[rottenrunner]

hi Daisy_Chain_12345, sorry to hear of your mums diagnosis, be thinking of you both wishing you all the best, I had a similar diagnosis in Oct 18, and the scan in March this year showed my cancer is dormant, you can beat this, I'm not there yet but getting there, believe you will beat it, keep active, I went vegan and take cbd oil, and I'm winning, take care and hope it went well today.

good luck

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear daisy chain,

it is understandable that you are worried about your mum's results tomorrow.Firstly she is fortunate to have such a supportive family.If you or your mum have any questions

you want to ask the doctor at the clinic write them down. Often because you are stressed you may forget to talk about what specific concerns you have. After you get the results,if you need to talk to someone don't hesitate to contact the nurse led helpline Freephone 0800 358 7200.

Kind regards,

All the team at the Roy Castle Helpline

[Daisy_Chain_12345]

Hi everyone

I just wanted to update you on today. It wasn’t the news we wanted. My mums results are T4, n2 and M1c and the cancer has spread. We are distraught. We are still waiting for marker results too but I don’t really know what they are for.

We were hoping the lung tumour was localised (nsclc) and that they could do surgery. That’s now not possible and we are looking at chemo. If anyone has any positive outcomes from a similar diagnosis i’d Love to hear them.

Thanks x

[Tcam]

I can honestly feel your pain.

Try and stay positive. Whilst your mums well and before treatment try and get away. Once your mum starts Chemo she might not feel like doing much for a while.

Sending massive positive hugs.

X

[Daisy_Chain_12345 in reply to Tcam]

Thank you for your kind words x

[JanetteR57]

Sorry to read about your mum's diagnosis. Having had my own diagnosis in jan 2011, I went onto raise funds for Roy castle and attended a conference of theirs in Nov 2012 where I met a patient advocate and CNS, Lyn Barrington. At the time, she had been told she had stage IV lung cancer (after 15 months of tests) and given less than 6 months to live. She managed to have different targeted treatments - then in their infancy and only available through clinical trials (now they are standard treatments) and lived 4 years 4 months after diagnosis. I have met others with just as 'poor prognoses' who also lived many years beyond prediction. Now there are new treatments and new combinations of treatments so there is always hope (unless you give up) - we're all different and cope in different ways. It's important to speak to her clinicians about her specific biology/pathology as the treatments offered vary hugely dependent on the status of the cancer biology as well as the patient's own characteristics and health. It's taught me that life is much more precious than I'd ever appreciated and spending time making memories or just being with somebody is more important than any amount of material things. Just be there for her - it will be valuable. There's a good book called 'what can I do to help?' by Deborah Hutton that may help. good luck to you and your family at this difficult time. x

[Daisy_Chain_12345 in reply to JanetteR57]

Hi JanetteR57

Thank you for all of your advice. It’s really appreciated and I admire your dedication to lung cancer research. I hope that I can do similar to you in terms of educating myself and raising awareness / funds at some point in the future. I just first need to focus on my mum’s treatment path and ensure that we can manage / cure her as best as possible.

I don’t understand about the cancer biology yet but will go and do some research now. Thank you again for all of your advice. You are a wonderful lady x

[JanetteR57 in reply to Daisy_Chain_12345]

Thank you - I didn't get involved in research for a number of years after my own diagnosis. I almost wanted to believe it hadn't happened - even when Lyn said to me 'this happened to you and you're involved with the NHS, you could do so much more to help others'. I still hear her voice on my shoulder now. I was working with adults with cerebral palsy at the time of my diagnosis and remember thinking, if I was unable to find my way around information and the convaluted system that patients have to navigate when treated at district general hospitals and sent to other centres for treatment, what do those less able to understand or less mobile have to cope with? My respiratory consultant suggested I get involved with a local group but as I didn't hear back, I applied for a role with the NCRI clinical studies group (a national role) where I completed 4 years in December so the baton now handed to another 'consumer' to take on. In the last 4-5 years I've been fortunate to attend so many groups and conferences and had no clue about cancer biology nor genomics beforehand and found I couldn't understand what they were talking about. Managed to get on a couple of short courses that helped immensely. I don't think we have to understand everything but a bit like taking a car into a garage and being bamboozled with technical terms, understanding some of the basics can help. Asking questions when we don't understand is probably better to help clinicians appreciate that the way they speak isn't always helpful. The information on Roy Castle website is regularly updated by clinicians and reviewed by a patient panel (of which I am a member) so it can be trusted. Clinical Trials come along all the time so it's hard for printed literature to be up to date but best to speak to clinicians about these as different Trusts are involved with different ones. Good luck.

[Daisy_Chain_12345 in reply to JanetteR57]

What a lovely story - thank you for sharing it with me. Thanks also for all of your advice. I really appreciate it x