A bit Lost

Hi Beanyboo

Welcome to the group though really sorry you have had to find us. It such early days for you and yes you will be in a whirl wind its like its not real. We have all been where you are and no how you fill.

Every one here will help you the best they can and will support you.

Please do not goggle it can be a bit scary and its well out of date, stick with Roy Castle or Macmillan sites.

Once you have had your biopsy you will know which way you are going and get a plan, we all get a plan. Every one says when they have that they no the next step forward, its not always easier but we do it.

So many new treatments becoming available, your oncologist will work out what the best treatment is for you.

 When you have those answers we can then tell you and others here their experience, so many different chemo combo's if that is the way forward.

You fill free to ask anything here some one will always get back to you , you are not alone we will support you the best we can.

We all need an off and on switch for the minds and this is one of them the mind runs riot and does not help.

Take Care Ellie xx

"You Never Walk A Lone"

Hi beanie boo 

everyone on this page will know exactly what you’re going through. I was where you are I. November 2019. I knew I had lung cancer - asymptomatic - swimming and walking regularly, no breathlessness, mood cough - but only got a full diagnosis on 3 Dec 19 of Small cell lung cancer with liver and bone mets. Im a former smoker (I am 62 and stopped smoking 30 years ago) I was a little upset to discover that the tumour had been visible on a urinarytract CT I’d had in June,  but that no one had acted on it until November when it had grown from 2cm with no mets to 9cm with mets. I found it very hard to let go of that until I realised that the key to this situation is to live everyday. 

In November I came on this page and posted something very similar to your post. Lots of people told me that once I had a full diagnosis and a treatment plan I would feel better. I didn’t believe them. But they were right. I started chemo and immunotherapy on 6 December and my last scan showed that the lung tumour was now tiny following four out of 6 chemo cycles.   I’ve found the chemo fairly easy to tolerate - if I’m fatigued I sleep, and I shovel down as many anti nausea pills as they’ll let me.  

Like you I’m worried about my family - I am a carer for my mum who is 87 and has dementia I’m worried about my cats - but I really believe that where there’s life there’s hope. I also feel strongly that we should all live each day as if it’s our last whether we have cancer or not.   I don’t have children but I have four nephews who are massively important to me (two of whom have both parents with cancer - one, their dad like me is incurable, but has lived with metastatic renal cancer for 7 years their mum (my sister) had breast cancer last year and their uncle on their dads side had a brain tumour a couple of years ago. This is more cancer than any teenagers should have to deal with, but they spend so much time trying to buck me up, that I’m lost in admiration for them. 

the bit between finding out you have lung cancer and getting a definitive diagnosis takes time and in my experience was the worst period on this whole hellish ‘journey’ but things do improve.  You’ll adjust to the new normal. I’m hoping to go back to work soon. I’m a local councillor in London and am still doing that as well as continuing to care for my mum.  

im sorry this was a bit longer than I expected but I hope at least some of it helps. Good luck. Annaxxxx

Hi Beanyboo, sorry you find yourself here. Like you, I'm only 42, lung cancer in one lung with spread to lymph nodes and possible pelvic region. Im an ex smoker, stopped 6 or 7 years ago. I'm due to start treatment chemo tomorrow, fingers crossed! Like previously said, feel free to come on here anytime and let your thoughts or queries out. I've found the support of everyone on this site amazing, there are a lot of very wise people on here and they will walk this horrendous time with you. Take care and stay strong. Xx

Hi Beanyboo

I am sorry to read of your diagnosis and your worries. No wonder your head is all over the place. I assume you must have done a lot of the diagnostic tests already? Hopefully that will mean your treatment plan can't be that far off coming to you and maybe you have an appointment already to see your oncologist?

Unfortunately people are getting diagnosed younger and younger, yet no one really believes this, until it happens to them or someone close to them. I was 34 when I was diagnosed pretty much 2 years ago. It spread to my brain about a year ago too. 

When a younger non smoker gets diagnosed they say 50% of them have a mutation called ALK... this will open up treatment options to you if you test positive for mutations. I know it sounds like I am talking in riddles at the moment, but once you have your full biopsy results we can explain a bit better.

The cancer research site and the roy castle sites are both good and more reliable sources to research if you want to.

I have no children, but I can understand why you are worried. Often people diagnosed at a younger age have different worries to contend with. There is a diagnosed at a young age on the site. Though sadly very quiet in there. The other place you may want to visit is Shine cancer support site too, which is aimed at 20 - 49 year olds diagnosed with cancer.

I am unsure how old your children are but Macmillan also has the following information on Talking to children and teenagers about cancer. They are also available on the phone to from 8am to 8pm on 0808 808 00 00 

I hope that is of a little help to you and keep posting when and if you want to.

Hi

Thank you for all of the kind messages of support, Lung cancer needs to be more on the radar and talked about more I never knew young adults or non smokers were a risk and it seems to be caught really late as well, really nasty and sneaky.

I have already had 1 Xray, 1 full body with dye CT Scan and a MRI with contrast ( sorry for the vague first rant) each time the news was worst than the previous so hopefully the Biopsy will come with some good news.

They dont seem at all worried about the liver mass more with the spaghetti hoop shaped mass in my frontal lobe they did mention surgery but I suppose thats further down the line.

I am being told via phone the results of the biopsy next week to save time so I can get an Oncology appointment ASAP. I have started to write my questions.

I dont do Facebook but a lovely Macmillan lady was in the hospital I was in and told me about the support on here, I am trying not to talk about it at home too much because it upsets them all so it will be good to talk to you all as you can all relate.

I am sure I will have lots of questions , thank you for the information regarding my children they are 19 and 15 but are Autistic so are struggling to comprehend so any help they can get will be wonderfull.

Hi,

Your situation seems similar to mine - it's hard to get your head round isn't it? I'm a 40 year old non smoker. They saw a mass in my lung in November during an x-ray for something else. I've had no symptoms. After CT scans and a needle biopsy I've had surgery to remove the affected lobe and the related lymph nodes. Just waiting now to find out whether there's a chance it has spread so I'll need chemo. 

My children are 18 and 16 and I'm just trying to be really matter of fact with them and remain positive. They seem to be handling it really well. 

If you do have to go for surgery, it hasn't been as bad as I feared. Although I am breathless after small amounts of activity, it's getting better every day. My surgery was just over 2 weeks ago and I feel pretty normal when sat down or just pottering around the house. Just have to remember to move slower!

Good luck.

Jo x

Hi

Glad to hear you doing well, the waiting is the worst part I found. Hopefully as it was small enough to remove it has not spread.

You would think as its the big C word you would feel unwell it still puzzles me, I just have an annoying cough, bloods are all okay and my chest sounds clear its the complete opposite to what I thought it would be like.

You have done the same as me with the children I think thats all you can do, though in our house my youngest cannot say the cancer word (it upsets him) so we have Brian in my Brain, Colin in my chest and Lilly in my liver and that helps him cope.

Hope the news is good

Jen

Thanks Jen, I hope you get some positive news and a plan in place soon.

Jo

Hi Beany

Yes, lots of people are completely unaware. It is why it lags behind all the other types, despite being one of the top diagnosed types.... it can be relatively symptom free until it's been there a while, hence it can get caught late and early diagnosis is usually by chance.

Never apologise, rant all you like, it does help. It is good they are talking about surgery. I think they will likely look at the brain first and then to the lungs (but I of course am not medical).

Good job on the questions, take a pen or paper or someone with you to write down the answers and ensure you get contact details of your allocated nurse, as often we think of so many things we would like to know after the appointment.

It is good that Macmillan pointed you this way, I find the forum helpful as local Macmillan was only open when I was at work, which wasn't helpful to me.

Best wishes for your biopsy.