All set for the PCR on Monday and needle biopsy on Tuesday. I’ve just had a call to go to the hospital tomorrow 9.30 for a CT brain scan. I can only think they’ve found something else. My heart is beating like a drum right now and I need to talk to someone. I can’t call anyone right now as I’ve had to call my nurse to ask exactly where I have to go and have to wait for a return call.
Please could someone get back to me to help me get a little calmer?
Fran
Well, it’s me again. I rang the Roy Castle nurse line and talked to a lovely nurse who explained that they quite often do brain scans. I was concerned because my nurse contact had not mentioned this at all. My nurse returned my call and I explained the hospital had called to arrange this scan. Anyway, she called the other department and apparently they will be doing the brain scan at the same time as the needle biopsy. My nurse apologised for not telling me about this earlier. She did give me some good news as well after looking at the scans.
Apparently there is no evidence of any other active areas in either my body or my bones so I’m just waiting for next Tuesday and hopefully my brain will be clear as well. She seemed hopeful.
Sorry to bug everyone with my panics and hope you are all ok
Fran
Dear Kanafapot
Thank you for posting your encouraging news, it is good to have that reassurance from your specialist nurse.
Please feel free to contact us to have a chat or to discuss anything further. Hope it has eased your mind a little that there is not spread that they have seen.
It is good you are being thoroughly investigated clinically and hope it all goes well for you next week.
You can email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600.
All the very best
The Roy Castle Support Team
Hello Fran.You will be panicking like mad now. Try not to worry they've found something else, the may not have done.
Wait for the nurse to contact you, it will be soon I'm sure.
CT scan may not have found something else. And if it has it may not be your brain.
If it is they will treat it Fran. Lot of options, radiotherapy, chemo and immunotherapy.
Wish I could give you a big hug!
Let me know how things go Fran.
Love and best wishes
Pam
xxxx
Awww try not to worry! They do these scans most of the time as standard!!! My friend who had breast cancer had a brain MRI just to rule out anything. I had a brain MRI and yes they found 2 little tumours but they were treated easily!
If going through this has taught me anything it really is best to know. Plus it shows that they are being really tougher. Think of it like having an MOT!!
Look at what you have done already! You are doing amazing and being so strong!!
Try to enjoy your weekend in the sun. You have got this. 🥰💪
Thanks LocketI agree it’s best to know but it’s not knowing why they call at such short notice. I didn’t know the brain scan was normal procedure until I talked to the Roy Castle nurse. She was very helpful. I talked to my nurse later on. I think it would be better if they gave out some information during the first consult rather than leaving it to full diagnosis. I came across this site by accident and it’s already been so helpful. My nurse has also told me there is a small support group run by the hospital for later.
I think the initial shock is very difficult and info about support sites would be helpful at that point, at least I found it so.
Thank you for your support xxx
Thanks Pam, so nice to hear from you. I’ve calmed down somewhat. It’s just when they call out of the blue with no explanation. How are you doing?Love Fran xx
Hi Fran
Your comments are spot on! Anything unexpected generates so much anxiety. Until you go through a cancer diagnosis, you really don't have any idea of the constant anxiety and stress. So many of the hospital teams are brilliant but a tiny slip - forgetting to tell you a brain MRI is standard process - has such massive consequences.
My husband and I had an enormously stressful couple of hours when the hospital system informed him his appointment time had been doubled (an appointment to discuss scan results). It was an admin error!!!! I had been literally shaking for those hours as we travelled into London and I don't know how my husband kept himself together.
Locket39 writes some wise words... it really is best to know, so you always get the best possible treatment.
I know how hard it is but please keep focused on all the fantastic treatments and all the people doing really well on them for a long time.
Best wishes to you,Sarah xx
Thanks Sarah,I really appreciate your comments and so glad it’s not just me overreacting. I’m seriously thinking that it would be so useful to know the process of diagnosis on a single sheet of A4 right at the beginning. Plus this website for those with possible lung cancer. Knowing doesn’t take away the stress but could reduce some of the anxiety.
I’ve already mentioned earlier that I’m using sleep meditation (on my other thread). I’ve found that I’m sleeping through the night without waking to my brain going bananas. Initially, after the initial meeting at the thoracic clinic my breathing seemed so much worse and I had a constant ache running across my body, just underneath my ribs. I’ve discovered that I was tensing my diaphragm. That’s now much better possibility due to the nighttime relaxation.
I don’t know what your situation is right now but I’m wishing you both love on this challenging journey.
Best wishes Fran xx
So pleased you're feeling a little calmer - it's all so unknown and we can read things into all manner of events - whether somebody calls sooner rather than later, appointments moved (irrespective of the reason) and our imaginations run into overdrive.
There are many many tests to determine lung cancer and also to check if it's spread anywhere and many are done to eliminate (i.e. rule out) as well as consider whether to rule in... it's like a jigsaw puzzle and they do a lot of tests then pool all the results to determine what happens next.... if it is lung cancer there are now so many treatments and different ones for different reasons they have to do them all then bring all the results together in your consultation after discussion by the team.
I remember being bamboozled by the registrar who told me my CT results and saying the white blob I was looking at shouldn't be there and when asked what it was said 'cancer' so when I asked what of as I couldn't make out what I was looking at as I'd never seen a CT before she said 'the lung'. when I asked how that was possible as I'd never smoked and said 'she couldn't tell positively as she couldn't interpret the scan' and went onto tell me that my case would be discussed by an MDT a couple of days later. As I'd never heard of an MDT she might as well have been speaking Swahili!
A few days later (having had a PET scan on the Friday) a letter arrived on the Saturday with an appointment to see a cardiothoracic surgeon so as I hadn't a clue I googled that and frightened myself that somebody was going to cut my chest open.
The following week I had a call pulling my appointment forward by almost a week and saying I had to go miles away to another hospital to see the surgeon 'first thing in the morning'... I remember being so anxious - yes, I needed surgery and had lung cancer and no, they didn't cut my chest open.
That was in Dec 2010 and I've been involved in lung cancer research since 2014 and often comment on language/communications used for patients as clinicians assume that all these terms or processes are familiar which they aren't.... and explaining the anxiety they can cause not only to the person but their families too.
Glad you've had some reassurance - this may help explain further. good luck with your results and hope you have further support soon.
roycastle.org/about-lung-ca...
Hello Janette
They’ve already mentioned at the initial interview that they would probably do surgery and see what else would be advisable. Tbh this doesn’t bother me too much. It was just the out of the blue muddle created by an admin error at the hospital and my nurse not mentioning a brain scan as part of the diagnostics that scared me. Once it was sorted, I breathed a sigh of relief, surprisingly. It also had the extra bonus of knowing the PET scan hadn’t found anything else. Compared to some of the others on this site I count myself very lucky.
I’m very glad I happened to be in the right place to access the Lung Check pilot. I also found on Radio 4 - Inside Health a programme some while ago about the initial pilot in the Manchester area. I do hope it’s successful and will be rolled out quickly across the UK.
I hope all is going well with you. It’s just one step at a time
Best wishes Fran xx
That sounds hopeful and yes, good that you're in one of the lung health check areas - Liverpool, Manchester,Yorkshire and London all had schemes before NHS England announced their initial 10 sites. Since then a second wave to expand the scheme was announced and some areas were given funding by their local cancer alliances to set them up - a third wave was announced so the area where I am will have 2 schemes before too long - one in Birmingham and one in Sandwell....
I'm on several lung cancer related committees including national and regional ones for lung screening.
Those areas announced under the NHSE scheme follow the same parameters whereas the early ones may have different age profiles or selection criteria although all are targeted only at those who smoke or smoked in the past....
It's always good to know when people have benefitted from these schemes. Detecting any cancer earlier offers potentially better outcomes....
Good luck for whatever comes next.... most UK lung surgery in the UK is now keyhole rather than open surgery that I had - and many areas now have pre-habilitation and post surgery rehabilitation services or advice to help patients recover quicker.
If you are to have surgery, the ooklet on Roy Castle lung cancer website is really helpful to answer any questions you may have and those you hadn't yet thought of.... roycastle.org/app/uploads/2...
Thank you Jannette x
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