New to all this and scared: Hello... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation
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New to all this and scared

Nerja-123
Nerja-123

Hello everyone - new on this site, and new to everything!! Was diagnosed about three weeks ago with inoperable lung cancer (lower right lobe). Unfortunately has spread to lymph nodes especially in neck and stomach. Have had initial CAT scan and cone biopsies on the largest node in the neck.

I think me and my husband are both still in shock - I'm 72 but have never had a day's illness in my life, 'cept niggly things, so still reeling.

I have only been able to have a telephone consult up to now due to this dratted virus but will see him in his clinic this Wednesday. My GP has been supportive as has the lung nurse at his clinic but I feel so desperately alone, and frightened doesn't even begin to describe it.

My husband has been wonderful but every five minutes he says "you've got to be positive" ….. I know that but it's hard when you're so terrified.

Can anyone suggest things I should be asking the consultant on Wednesdday?? Don't know where to start!

Sorry this is such a long post but it's a relief to geet some of it off my chest.

Good luck all

15 Replies
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RoyCastleHelpline
RoyCastleHelplineAdministrator

Dear Nerja-123

Welcome to the forum and so sorry to hear of your recent diagnosis and how this must be a shock for you and your husband. It is totally understandable how frightened you must feel but please know that you are not alone. There are many on the forum who have been where you are just now and am sure you will find support and encouragement here.

We have provided a list of questions that you can ask at your appointment and you can find these on page 48-49 of our booklet' Managing your lung cancer diagnosis':

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

There are a number of booklets on our website from diagnosis, treatments and living with lung cancer. These can be found on this link: roycastle.org/help-and-supp...

We have a new service called 'Keep in touch' set up to support those who may be feeling isolated during this time of Covid-19, where one of our dedicated team members will call or email you once a week to provide support and advise where to source this if needed. If you would like to register for this you can do so through this link:

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

There are many inspirational stories on our website that may encourage you through this difficult time which can be found on this link: roycastle.org/campaigns/

If you would like to discuss anything or go over anything after your appointment you can either email us at lungcancerhelp@roycastle.org or call our freephone nurse led helpline number on 0800 358 7200

All the very best

The Roy Castle Support Team

Thank you, thank you!!! Your reply has made me feel not so alone. Will download the booklet and no doubt will have loads more questions after Wednesday.

Thanks again!

Eglingham
Eglingham
in reply to Nerja-123

Welcome Nerja, I'm only a few weeks new to this myself and I know it is scary but your husband is wright about the positive approach, you need to know If there is a plan and what it is, once you have that your positive fighting spirit will kick in, this is what gets me through and I see as my life my body and I'm taking control. Your not alone and you still have so much more to give ☺ stay strong and here if you need a chat x

Nerja-123
Nerja-123
in reply to Eglingham

Hello Eglingham and thanks for your response. Am trying my best to be brave and will probably be more gung-ho after tomorrow's consultation when (hopefully!) a treatment plan will be worked out and I can just 'get on with it'.

Trouble is, I've always been a bit of a wimp and this isn't helping!

Good luck to you Eglingham… we'll get thru this together!!!!!

Eglingham
Eglingham
in reply to Nerja-123

Hi,

Kind of always been a wimp myself, never been in hospital before never been ill so it is a blow to be hit with something like this. Good luck for tomorrow and stay strong we can do this. xx

Nerja-123
Nerja-123
in reply to Eglingham

Good to know there's someone else who's not necessarily hero material!

Yep, that was an unexpected curveball when like you I'd never been ill in my life.

Thanks for good wishes! xx

Welcome Nerja-123. You have just had one of the greatest shocks we can have, hearing you have lung cancer. Although your cancer is inoperable, there are many treatment options out there, many more than when I was diagnosed 5 years ago. I am still here in spite of the odds, so there is hope. I will pray for you as you start this journey. Jean

Nerja-123
Nerja-123
in reply to JeanE41

Oh Jean thank you for this comforting message, and thanks for the prayers.... I appreciate it, and your kindness.

It's always a shock - but there are many treatment options now - and combinations of different types of treatment. However it takes time to obtain all the information to find the best ways to treat lung cancer so one thing I had to learn was patience. I'd not been ill when I was admitted to hospital in Oct 2010 and then in December told I had to lose half my left lung and the 'large mass' and confirmed in January 2011 it was non small cell lung cancer. There were no online forums, the online data was terrifying and I didn't really feel very positive. I was back at work and swimming 3 months later and started raising funds for Roy Castle after we lost a dear friend, to regain my fitness and give me a focus. I attended their conference and having met a patient advocate (nurse) who suggested I could get more involved. Since then I've joined many committees and groups and attend lung cancer conferences each year. I'm fortunate to hear those researching new treatments as well as clinicians who administer them. Things have come a long way but since my involvement in 2014, I've met patients who survived over 20 years (before some of the new treatments) and many who are doing well on new treatments. There's some really clear well explained information on Roy Castle's website and some good books if you're able to read about it - (not everyone wants to). One I'd recommend is 'cancer is a word not a sentence' by Dr Rob Buckman and another is 'what can I do to help?' by Deborah Hutton. Write down any questions before your meeting - Roy Castle information on their website suggests some questions you may like to ask (see the information on 'having a lung cancer diagnosis' - no point reading about all the different types of treatments until you're aware what may be possible from your consultant as it's a very personalised approach these days. I had an appointment on Friday at our local hospital and the nurse there said even with covid 19 situation, they are still allowing somebody in with the patient when they are explaining the diagnosis so hopefully that will be the case for you... it's usually easier for the other person to hear/listen to it all as a lot of us go into a 'brain fog' when in the consultation room. good luck.

Thank you Janette for this really helpful response. I've read and noted the questions in the booklet but have tried to steer clear of the more technical bits as they sound a bit scary!

Thanks again,!

Nerja-123, I hope this message doesn't get to you too late and you have already seen the Oncologist. Firstly find out what type of Lung Cancer it is. Small Cell or Non-small cell. It may be in-operable but it may be treatable with Chemotherapy and Radiotherapy etc. Take everything in that he says and don't be frightened about asking other things. He will probably have a Macmillan Nurse with him, this is normal. Be brave and dont let the jargon baffle you.

I am so sorry you are another person finding yourself afraid and having to come to a forum about Lung Cancer for answers and help. We will all try our best to help both yourself and your hubby with any advice we can. I went through it with my Wonderful Wife Tina, and have been in the same position to your Husband. It will be a fight but as you haven't seen the Oncologist yet you haven't got the answers as to how hard it will be.

I will Pray for you both today for the outcome to have some positivity for you both.

God Bless and Be Strong.

John x

Many thanks John, both for the useful advice and for the prayers. Will be setting off shortly and am shaking! Thank you again - so good to know I'm not on my own! x

Just to let you know, that things went reasonably well yesterday. Not that we seem to be much further on.... they still have to do more lab tests on the biopsies (something to do withgo markers) so they can tailor the chemo.

But it was good to meet with the lung nurse and chest consultant and they all seemed very positive - no-one seemed very bothered about my lymph nodes which are my main worry.

So - tele consult with oncologist (due to this dratted virus) at the Christie in Manchester next week and we'll see what transpires then.

Thanks again so much for all your support and prayers and good wishes. They meant and do mean a lot!

God bless you all!!

I have been living with ALK+ lung cancer for 3 and a half years now. I was 43 when I was diagnosed but I was lucky enough to have a gene mutation which meant I could be treated with a specific targeted therapy. My first tumour was removed by surgery but after a course of chemotherapy returned as multiple tumours in both lungs. Thankfully my medication is still working and my lungs are currently clear.

I have been through the ups and downs from diagnosis to now as we all have but the most important thing I have learnt and give as my advice to you is this.

Be your own advocate, do not be afraid to question or challenge your oncologist or members of their team. You know you’re own body and listening to it Is your best weapon.

I have had many occasions when I’ve had to wave my hands, stamp my feet and put my head above the parapet.

I’ve heard great things about the Christie so you are lucky to be able to be treated there.

Talking is also essential and counselling is always an option. I gained a lot from talking to a Macmillan counsellor who listened and helped me put things into perspective.

Wishing you all the best. Bella x

Thank you Bella for this.... I'm hoping that now I'm actually in the system and know more about what is, or might be, going on I'll feel more feisty even combative when necessary! Up to now, just worst case scenario has gone through my mind all the time but the medical staff I've met up to now been supportive which has been a comfort.

Thanks again for your kind words and helpful comments - much appreciated!

Caroline x

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