Review meeting… scared

[mishamilo53]

Just received a call inviting me back into the chest clinic next week as my results are in …. This diagnosis period has been unbearable but I’m also so so scared of the outcome of all the tests ……is it normal to go back into chest clinic for these results ….. how did you all cope ? Should I be asking lots of questions? But then I don’t know what to ask until I get more info? …. As you can probably tell . I’m in a flap …..send advice and a bit of courage please x

[IanM1957]

Hi Elly,

I'm not sure there is a standard protocol setting out who you see once your scan results are in, I guess it varies from one NHS Trust to another but please don't read too much into the fact that you've been referred back to the chest clinic (in my case I was referred to a lung surgeon to discuss my results).

Do you have access to your medical records held by your GP (probably through a website or app called Systmonline)?

I found this very useful in the early stages of my diagnosis/treatment - the MDT regularly shared the notes of their meetings with my GP and I was able to view them.

As for questions to ask - as you say, until you have more information it's difficult to formulate a list. I would ask - what treatment plan do you recommend?; when will it start?; what follow-up care will I need?; what type of cancer do I have?; what is the short and long term prognosis?

I think I've said before that no two of us are alike in the way we process and deal with these issues - I'm fortunate that I'm able to let my mind go blank and not think about anything at all but I feel for your anxiety and can only say hang on in there.

Try to stay calm and make some "me time" doing things you enjoy

Ian

[mishamilo53 in reply to IanM1957]

thanks Ian for your reply , I appreciate you take the time to post a detailed response … I’m not sure I want to see the gp notes I’ll probably misinterpret them 😂 I don’t know what I’m more feared of , the outcome of the tests or my reaction to them …. But it’ll have to be faced regardless won’t it and worrying this weekend won’t help I guess ……. Someone is coming with me so if my brain leaves the room or I’m replaced with the incredible hulk , someone will at least make notes … I’m going to ask if I can record the meeting too x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Mishamilo53

It is understandable how scared you must be feeling and it is better to have a face to face for any results and to have the opportunity to ask questions, rather than over the telephone. You may wish to take someone with you, if they will allow it.

It is not unusual for the lung cancer nurse specialist to be in the room with you for any results.

Sometimes, when we attend appointments, it is quite common to only hear the first few words or sentences, some people find it helpful to write things down and it is good to have someone with you.

This link (on page 48 of the Booklet) provides some questions you may wish to ask: roycastle.org/app/uploads/2...

The waiting causes so much anxiety and worry for many and you have been on quite a journey already with your investigations.

You are welcome to contact us once you have your appointment, you can email ask the nurse at [e-mail] 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

[mishamilo53 in reply to RoyCastleHelpline]

thank you so much for your reply , I appreciate it x

[mishamilo53 in reply to RoyCastleHelpline]

I’m just read the linked document , that’s so helpful, thank you

[Nick_Ed]

I was referred back to the chest clinic, though the nurse was happy to give me my results over the phone once I asked. It wasn’t great news, but as good as it could possibly be when they say you have cancer. I knew really - this was just confirmation.

I think you will surprise yourself with your reaction if the diagnosis is cancer. We are stronger than we think we are. We are all different, but the waiting period was far worse for me, and the bit between diagnosis and surgery (planned for the 25th) is almost as hard.

Having someone with you is definitely the right thing to do, whatever the results. Support is every bit as important as treatment in my view.

Good luck with your appointment.

[mishamilo53 in reply to Nick_Ed]

thank you for your reply…. They’ve more or less been 99% sure it was cancer from the get go ( ct scan ) I just don’t know the stage , type etc and that’s the scary bit …. You’re having surgery ? That’s a curative option isn’t it ? Good luck on the 25th …. Such a long time to wait for you …..

[Nick_Ed in reply to mishamilo53]

Hopefully curative, yes. I have had to wait longer that’s usual as I also have myasthenia and they needed to reduce my steroid dose. I’m just hoping the wait hasn’t given it time to spread, but there was no alternative, so it is what it is.

Good luck with the staging.

[mishamilo53 in reply to Nick_Ed]

some of these medical names ( myasthenia ) , sound like exotic holidays don’t they - wish they were ! I wish you well with your op and going forward …. It’ll be both scary and a relief to get it done I imagine x

[Cosmic54]

Always take someone with you at the appointment’s I found that I lost my hearing or the ability to hear and understand what my consultant was saying..my hubby asked all the questions and took on board all that was said it was like I was there but watching from a distance. You will get there it all takes time..sending you strength for your appointment.

[mishamilo53 in reply to Cosmic54]

thank you for your reply , yes I was like that at the first meeting , it was like my brain upped and left the room … the drs mouth was moving but I couldn’t hear anything….. I’m taking someone with me for this one …. Also someone suggested asking if I could record it ? X

[Cosmic54]

Ask first 👍 whatever the outcome I wish you well and stay off the internet it’ll only make you anticipate more and you’ll be in a right fuddle more than you are now 🤞

[mishamilo53 in reply to Cosmic54]

thanks love , yes I’ve avoided dr Google ! I just don’t want to be passively sat there being spoken at rather than participate in the discussion , hope I don’t freeze this time x

[mishamilo53 in reply to Cosmic54]

how are you doing love , ? X

[Cosmic54]

I’m ok .. I’m in the “not a lot I can do about it” 🤷‍♀️🤷‍♀️🤷‍♀️ phase not going to waste my time on worrying about things I can’t change it takes energy and it’s energy I need to keep for myself so just getting on with each day as it comes, know what I mean 🤞👍

[mishamilo53 in reply to Cosmic54]

that’s a really good way to deal with it I guess … are you in your immunotherapy phase now or still chemo ? X

[Cosmic54]

back on immunotherapy had to have a break because I had a chest infection and I needed a CT scan to confirm that it’s not the treatment making me poorly … luckily it’s not so I restart on Tuesday I’m on steroids for the next 4 weeks to cover, steroids are like the magic pill I’m eating and put on a little weight which was needed coz I lost 3 stone in a matter of weeks….I now find I can tuck my tummy skin in my knickers to keep it in place and had to buy smaller bras because my breasts we rattling around my old bras … was a size 16 now 10/12 but hey in the grand scheme of things it’s nothing to get upset about 👍

[mishamilo53 in reply to Cosmic54]

that made me giggle . What caused all the initial weight loss ? ( stress?) I’ve actually put on weight during this waiting period… blumming comfort eating I guess x

[Cosmic54]

it was the radiotherapy I was upchucking any thing and everything…the radiotherapy has now shrunk Beryl (yes I’ve given it a name) 🤦‍♀️🤷‍♀️ If she plays up I just feed her a little morphine to shut her up that seems to do the trick 👍

[mishamilo53 in reply to Cosmic54]

I love your attitude , and I hate “beryl “too x

[Ianhick]

I was referred back to chest consultant, morning call for afternoon appointment, and he told me what the results were and would refer me to surgeon.

Definitely have someone with you, write down anything you think of between now and your appointment, see nurse specialist afterwards as they will give you more information on support and what happens next.

Ian is right, we are strong enough and knowledge is power, its the unknown that's scary.

Thinking of you for positive outcome.

[mishamilo53 in reply to Ianhick]

thank you Ian , someone is coming with me thankfully so if my brain exits the room someone will stay to listen . we both have a big day Monday then and you will be in my thoughts and prayers too …..

[Elt79]

Hi Elly I did go back to chest clinic for results and then discussed potential treatment prior to moving over to oncologist. I remember feeling exactly as you are feeling too. Try to stay positive and strong x

[mishamilo53 in reply to Elt79]

hi there thanks for the reply . I’ve got this habit of overthinking stuff …. Like the 3.30pm appointment being the bad news appmt time ???? What’s that about ? How are you doing love ? 💕

[Elt79]

Bless you - sure time has nothing to do with news ! I’m doing ok thanks not looking forward to colder weather! Spend a lot of time in garden, which is great so will miss that but signed myself up for Tai Chi and Zumba - pretty useless at both but gets me out 😂. Take care and positive thoughts! x

[mishamilo53 in reply to Elt79]

I love tai chi , so relaxing … couldn’t do Zumba at the mo , struggle to get upstairs with a cough to shake the timbers 😂 have you tried Pilates , loads on line … I’ll miss the outside too during cold weather …. Are you having treatment at the mo love ? …. I’m always up for a chat too anytime you want to 💕

[Elt79 in reply to mishamilo53]

Hi - I finished treatment of Pembrolizumab 2 years so next month - considered ‘stable’ for lung and adrenal cancer. Also have brain mets which have been treated twice with SRS - Feb 2019 and Feb 2021 when came back. I consider myself extremely fortunate-diagnosed October 2018 Stage IV NSCLC with adrenal and brain mets. Very poor prognosis- BUT, despite gloom and doom, am living fairly well, despite their expectations, and am doing ok!! Not even had any scans since February, which is really scary, not due still April 2023 - haven’t had any contact with hospital since May. Bit if a shock to not be monitored. So I try to just take each day as a blessing and it’s ok to have the odd bad day but stay positive as much as I can! Take care x

[mishamilo53 in reply to Elt79]

thanks for sharing your story . Can imagine it’s a bit scary not being monitored …. But well done you remaining positive …. 💕

[JanetteR57]

the waiting time at the start is one of the most anxiety filled times of the whole experience so I totally get where you're head is at.... try not to overthink it or read anything into the time of day, time it's taken (too soon/too long), many trusts are struggling to keep up with results and prefer to have a face to face meeting to give patients the results. as others have said often there will be a lung clinical nurse specialist in the room too but you can take somebody with you and usually recording the meeting is fine. there is good information available on Roy castle lung cancer foundation website - but stay away from google as a lot of the information at this stage may confuse and may well not be applicable in your case as lung cancer treatment is very much more personalised than when I had mine (back in Dec 2010/Jan 2011). I have always seen the consultant in our chest clinic in our district general hospital but I was phoned by the consultant's secretary who said having seen the PET scan results the consultant wanted to see me first thing the next morning at a specialist hospital (as he was a visiting consultant to our DGH) rather than my scheduled appointment a week or so later at the local place. however I still had no idea what he was going to say... my main questions were 'how do I prepare or get fit for the treatment?' 'what won't I be able to do after my treatment that I can do now?'another I often suggest is' if I have more questions when I leave here, who can I contact for more information?

my treatment was open surgery to remove half my left lung and the tumour but I was back at work and swimming by the end of March 2011 and gone on to swim much further than I did previously and I was already a regular distance swimmer. good luck for whatever happens.... as others have said, we are often far stronger than we imagine -

am grateful for every day and value life far more than before...

roycastle.org/about-lung-ca...

[mishamilo53 in reply to JanetteR57]

thank you Janette , great ideas for questions too 💕

[UdoUdo]

I was admitted to hospital for a week, a cough that sounded like I'd been mining asbestos all my life, had CT scan, xray etc. Was told I had collapsed right lung, shadow on it and enlarged lymph gland then had Ebus procedure and my brain was in no doubt that lung cancer was only outcome.

I didn't goggle too much when sent home to await results but found the Roy Castle site so helpful in reading other experiences. Was called to clinic week later for results, which amazingly showed negative for cancer, and they thought I had had pneumonia .

I had taken sister with me, had used the Roy Castle "things to ask consultants" and added my own questions, with gaps for replies, and given sister the same set so she could write them in.

Sounds weird, but I almost felt cheated when told I didn't have cancer as I had psyched myself up for it, arranged to show sister where all my valuables were, bank details etc.

So don't be too sure you are positive for cancer - I would have bet my house on it that I did. I have a follow up scan arranged for December to see if the infection in lung gone or if anything is different.

Agree waiting for results is worse time. When you get them, whatever they are, you will feel more in control.

All the very, very best and I will be thinking of you x

[mishamilo53 in reply to UdoUdo]

thank you for your kind reply and I’m so so happy for your outcome …. My respiratory consultant seems to have been 99% sure that I’m dealing with a tumour with lymph node activation since he gave me the results of the ct scan so I’m honestly expecting confirmation of that together with the staging etc tomorrow … I’m writing my questions today and will give the same to my accompanying person too , that’s a great idea so thank you for that . X

[UdoUdo]

If it helps at all, here are the questions I had ready, a mixture of the ones off this site and my own x

Questions for your doctor or lung cancer nurse

I have been asked to go for covid/flu jab now for 4th one – can I?

1.What type of lung cancer do I have? Small cell or non small cell.

2. What stage is my lung cancer? Has my lung cancer already spread, or is

it likely to spread in the future?

T

N

M

Enlarged Hilar node – what indicate?

1. What other tests am I likely to have and what are they for?

2. How long do the results of the tests take to come through?

3. Is there anything that could stop me having treatment?

4. How is my lung cancer likely to affect me? Will I have more symptoms?

5. Will I be able to continue to go to work?

6. What options are available if I can’t (or choose not to) have treatment?

9. Who will look after my care?

10. If I have treatment, what results can I expect?

11. Is there anything I can’t do during treatment?

12. As progresses – can my care be managed from home?

13. What other support is available?

14. What can I do to help myself?

15. What about clinical trials? Should I think about trying to get on one? Christies/Glenfield

Who are my main points of contact?

Name:

Job title:

Phone number:

Teeth – all upper jaw now have individually wired in teeth!!

I’ve had loads of blood tests over stay at Glenfield – do they show anything that needs to be discussed?

Outcome of CT scan and x-ray?

My case was going to be discussed at Last Friday’s meeting due to poss Adamantinoma metasising from Tibia ( although RNOH still not sure if I have that or Osteria Dysplasia as they present in similar way.

My antibiotics /steroids have run course - do I need to have new prescriptions – in myself since taking all meds I have actually improved some of other ailments in leg/hip etc. general stability

I know that a shadow in that area of lung and a collapse of it never occurs without something more sinister being present – can you already tell what they would be?

What would be the way forward now?

Trials?

Looked at trials on line that Leicester and The Christie are doing and the pros and cons of different pathways

Saw Dr Patel in Ward 16 and have appointment with Dr. Agrawal in respiratory clinic on Tues 4th Oct– is there someone that is taking the lead as named consultant that I need to filter things through or does each area of excellence lead their bit?

DO I have a contact for my Cancer nurse?

Read interesting article online about inappropriate use of Cortisol due to caution and that alternative trails taking place?

Lymph nodes enlargement /shadow would seem to indicate cancer – am I getting ahead of myself?

Can I exercise/go swimming – what can I do to improve outcomes

Is it poss to improve outcomes or is 5 years top - most likeliest with 3 years seeing to be the norm?

Prognosis always seems poor

What happens now

What should I do

Re-inflation of lung – if I had infection not cancer – would lung have magically re-inflated by now? Will it ever?

Obviously, some won't be right for you, but some may,

all the best,

Udo Udo xx

[mishamilo53 in reply to UdoUdo]

thank you so much , so helpful x

[Glitterpink_18]

I got a phone call 4 years ago telling me I had lung cancer, the same kind my oldest sister was being treated for. I began screaming. I was the only child out of 8 who never smoked! The fear was paralyzing. I feel lucky because I had a right upper lobectomy and didn't need any other treatment.

God be with you. You will be in my thoughts. Connie

[mishamilo53 in reply to Glitterpink_18]

thank you Connie for your kind words x