Early days and really scared - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Early days and really scared


I heard last week that CT scan showed a 4cm mass upper anterior lung, probably lining and I had my PET scan this morning. I have to say I am so scared and my mind is working overtime as I've had ringing in my ears for the last few weeks. I don't know if the ringing started when I first had the news there was something wrong but of course I am thinking the worst and thinking cancer of the brain. I'm finding that dealing with the terror is almost harder than dealing with the reality. How do others cope with this fear in these early times and has anyone else had a similar experience?

12 Replies

I was diagnosed with similar almost a year ago to the day. I had a 5 cm mass in my right lower lobe. It's horrible in the beginning but it does become the new norm in your life after a while and one day you'll realise you got through a few hours without it being the only thing on your mind. I've had surgery and chemo and went back to work in January and, to be honest, the distraction of doing something else really helps. I named my tumour frank and that helped me. We talked about evicting him and him being a squatter! It takes time to sink in but there will come a time where normal life takes over again. Try to do things to distract you and do some nice things too. It can be a good wake up call to enjoy each day. Best of luck with it all. I cannot believe how well I am a year on x

in reply to Jackie46

Thanks so much, you give me hope and some ideas of how to cope with the fear.

I am so pleased you are feeling well after one year and back to work.

In about a week I will know the results and what my 'Frank' is like and how to get rid of him.

Hi, I was diagnosed with the same at the beginning of December, 2 days before my daughter's wedding. It wasn't a huge surprise to me. I had a PET scan and a bronchoscopy in December. We got back from the wedding (in Cornwall) to find that my elderly Mum had been admitted to hospital with a bleed on the brain. My dog then developed a renal problem so we were up and down to the vets. Plus all the Christmas preparations happening! I told my husband when we got back from the wedding but kept it from everyone else until we had all the results. I carried on working (part-time) during this time. It was totally surreal, I had no idea how far the cancer had spread or what my outlook was but all the running around definitely helped at the time, I just felt a bit numb. There seemed to be a lot in the news about lung cancer, none of it good, such as AA Gill being diagnosed and dying within a few weeks. To me, every twinge was a sign that the cancer had spread and at 59 I get quite a few twinges. I tidied up my finances and also had a half-hearted junk clearout - didn't want my nearest and dearest to have to do it.

I saw the consultant again on 5th January and was told that there was no spread and they recommended surgery with curative intent, possibly followed by chemotherapy and I couldn't have been happier. He told me the surgery would happen quickly, probably within 2 weeks. By this time I'd lost the plot a bit at work so went off sick. Due to my referral letter getting lost I didn't see a surgeon until 30th January and had my op on 7th February. So, from 5th January onwards I was at home, dog had recovered on a hideously expensive low protein diet, Mum was tearing around like an 18 year old, so it was just me thinking about cancer. It's fair to say it preyed on my mind a bit. That was definitely the worse period. I think it was the thought of a potential cure but nobody seemed to be doing anything about it, there seemed to be a lack of urgency. I tried to concentrate on keeping well and exercising to be as fit as possibly for the op.

I recovered well from the operation. Had my first part of cycle 1 Gemcarbo last week, 2nd part tomorrow. I'll update on that elsewhere once I've completed a full cycle. I'm cautiously optimistic about the future, taking each day as it comes and trying not to sweat the small stuff. As Jackie said, distraction is good and try to do things you enjoy.

Best of luck with it all. Do keep us updated.

Hello Valpayne - Jules here (on behalf of my mum).

Your post hit a chord with me as my mum found out a few weeks ago she too has lung cancer -stage 4.

She is surrounded by loving family, but to me seems very alone with the cancer -

Mum seems to have gone through a couple of stages during this time - but mostly 2 things - anger and absolute sadness.

She (I think) is really focused on the welfare of her dogs (an mine) now.

Mine too has just discovered he needs to be on a low protein diet (like 'SAH1') - he has stones in the bladder.

Today she has used lots of energy researching my dogs problems and possible treatments.

Every night she goes to bed really early - i know that this is because she is SO tired nowadays - but i do also think, she retreats to her room to 'shut out' the cancer. I think this is how she is dealing with it.

Sorry for ramblings - wanted to say hello, and i hope you get some good advice from some of the lovely people on this forum.

Kindest regards


I'm also retreating early to bed. I've not had diagnosis yet as such early days, only hearing last week following CT scan. I take to my bed about 5/5.30pm. I've been having a large glass of wine too which helps.

I find being in bed comforting and I watch some TV or play with my iPad, sleep then wake and do same again. I guess its whatever gets you through the terror. I hope that once I know results/plan, I can get down to sone positive actions rather than just comfort actions.

I can feel it growing, I feel twinges, I feel tingles in my face and think brain cancer, I feel twinges in my liver and think the same. I know this may be my imagination but at the moment I don't know and this is what is hard.

Just want to say huge thank you for your replies. You are helping me enormously and I dont feel so alone x

I meant to say that my daughters who are in their early 30's are trying to deal with the news as you are Jules. As a mother, you want to protect your children from bad things but actually I think it binds you even closer. All you can do is be there and that is a huge comfort x

Hi valpayne

I am writing in relation to my mother. She was diagnosed 22/3 failed biopsy and a month later we've just had the ebos scan for the lymph nodes. My mum was up and down. Appetite has returned but feeling exhausted and early to bed too. So still waiting on prognosis and treatment plan. The waiting is torture and we are all anxious. Just praying for everyone on this journey.

It hits us all when we are told we have lung cancer, I spend most of my time crying, just any little thing said we start me off, must have cried near constantly for about a month. I could not sleep, and as others have said went to bed early, watching tv, slept a few hours then put the tv back on whilst having a coffee - watching something, especially in the middle of the night did help it seemed to take my mind off things, and with tv on low and timer slowly drifted off again. I am sure that all of use find the first month at least, very difficult and we ask 'why me'. I have now had wedge surgery to remove my lump, it was on top left lung, but scan showed that it had affected my lymph nodes, so trying to get that under control is going to be hard. I do now look to do more at home that takes my mind off the cancer, I've been doing the spring cleaning of cupboards and things. We also try to book a couple of days away when I've a good week, it gives my partner and me something to look forward to that is a nice experience. I hope you stay strong (after the initial down moods) just try to live the happiest you can and make good memories. Take care.

I was initially given some diazepam by my GP to help me through the initial shock etc. She said to take it as and when I needed it. I did work my way through a packet by just taking it when I felt very anxious and needed to chill. The GP who prescribed them for me said that she had taken them this way at a difficult time in her life. I found them to be good, especially when I met with a relative who was very stressed about my diagnosis.

I have also done things like in other people's posts. We go away for a few days when I am well, I look after my health as much as I can. I pace myself. I try to avoid stressful situations and do nice things to balance out hospital visits etc

Livvyloot my mum cried initially too I think it's the shock. Try listen to deepak chopra or Devi prayer on you tube clips. Try visualisation and imagine it shrinking. My mum has been doing this and also tapping someone said about eft emotional freedoms technique again google plus there is stuff on you tube. These are all helping my mum relax a bit until we get the prognosis.

Hi Val

There have been some great responses above and useful tips to help you get through this wait. Waiting is the hardest part, not knowing what the next part will be, but thankfully there are lots of encouraging stories from all the inspiring people that have replied to you.

Let us know how you go. If you wish to discuss anything you can call us on our free nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

Hi, I to have recently been diagnosed with lung cancer, now waiting to see surgeon regarding my options, as they found another spot on lower aspect of same lung. I know how you are feeling, it is horrible, it's all I can think about just now. Also what my quality of life will be after op. Its really hard to speak to family and friends about it, so I tend to keep it to myself which isn't helpful. Hope you get the answers you need soon, but u are not alone in this journey, take care x

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