worried and anxious

[Sally789]

My lung cancer growth is small and operable. I just feel so worried and anxious it’s spread. As well as the operation to remove the growth with lower lung they are going to take lymph node sampling. I wondered if this is usual and would love to hear from anyone who has had this done. I’m planning to join the on line support group tomorrow

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Sally789

Sorry to hear you have lung cancer and an understandable worry and anxiety that you have with this.

It is encouraging that they are able to do surgery and sometimes they remove lymph nodes to ensure that there is nothing there that was not seen on the scan. Many recover well from their surgery and often get back to their normal activities.

You may find this link to our surgery booklet of use, it also provides timelines to recovery at home: roycastle.org/app/uploads/2...

Please let us know if you would prefer a postal copy on the contact details below.

Hope you hear from others about their experience and you are welcome to contact ask the nurse if you would like to discuss anything, our email is [e-mail], alternatively you can call us on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Wishing you all the very best.

The Roy Castle Support Team

[Hopeful51]

Hi - my husband was in a similar position earlier this year and I know how easy it is to worry. I think the lymph node sampling is fairly standard after surgery and they explained it to us that it was precautionary in case the scans hadn’t picked up anything small. It took a couple of weeks after surgery to get the results but my advice would be to focus on the surgery and your recovery for now. My husband (71) had an upper right lobectomy in April, he was out of hospital in less than a week and found the breathing exercises really helped so get on top of pain in early weeks and focus on these. In the end he didn’t need any additional treatment after surgery and is pretty much back to normal. Focus on the fact they have found this early and once you read some stories on here you’ll see that even if you do need some follow up treatment it’s not the end of the world and treatment options are much improved. Good luck with the surgery and stay positive.

[Sally789 in reply to Hopeful51]

Thank you, I feel better knowing the sampling is usual. This is a great place to be on, read so many heart warming replies makes me feels better. I’ve been told that clearing the chest before and after is so important so I will be concentrating on that as well as walking about - as much as I can

Eryl X

[Kazzacrazy]

Morning yes I had quite alot of lymph nodes tested luckily non were positive. My cancer was found early it had grown a bit by the time I had surgery but it was all removed and all margins were clear. I chose to have adjuvant chemo to mop up any rogue cells as my tumour was 4.2cm so they deemed it borderline just out of their safe zone. I was anxious too I still am to some extent I'm waiting for the first ct scan results which hopefully Will put my mind at rest. It's only natural to worry but try and take one day at a time concentrate on getting prepared for your surgery .I find mindfulness helps I have an app I listen to when I get a bit overwhelmed xx

[Pip444]

Hi Sally, I was in exactly the same situation as you this time four years ago. Whilst it’s only natural to worry as it’s all unknown territory for you, if your experience is anything like mine, the operation and recovery was far better than I’d thought. I was in hospital for a couple of nights and was back walking my dogs again within a month. I had lymph node sampling too which was clear so no further treatment was needed. I have had yearly checks since.

I found it, and still do, find it useful to be on this group and wish you all for your op and recovery.

[Sally789 in reply to Pip444]

Yes I believe the lympho node sampling is normal. I need to stop reading into things and just concentrate on keeping myself well so the op goes ahead. I’m so glad I found this group as everyone is so positive.

Thank you for your words.

Eryl X

[Rosegarden100]

Hello Sally

I had exactly the same diagnosis and exactly the same operation with removal of the lower left lung lobe and lymph nodes ( this is normal )that was 14 weeks ago . I can understand you worried, as I was just have to prepare for the operation buy some vests and or large fitting brallets as you won't be able to wear a conventional bra for quite a few months because it's a little bit painful where the chest drain well have come in and come back out. Also get a V pillow they are amazing because you won't be able to lie down properly in bed, but you can sleep quite comfortably. Do take the painkillers and the constipation relief drinks because a couple of weeks ago I had a urinary infection because I've not been able to pass water properly because of the constipation that was an interesting scenario, but quickly sorted out with a short course of antibiotics. If there's anything you need to ask, everybody is very helpful and extremely positive . Whereabouts are you having your operation?

hopefully we will see you online later x

Rachel

[Sally789 in reply to Rosegarden100]

Thank you for your reply really appreciated. I’m having the operation at Wythenshawe Manchester. I think I’d feel a lot better if I could have a good nights sleep, im going to see a herbalist today see if he can give me anything. Not sure why I’ve got myself in a state im normally very laid back ! I’m sure everyone is the same though imagination runs riot. I’m going to ring Ellen this morning make sure I get the link for tonight so yes should see you later.

Eryl X

[Kazzacrazy in reply to Sally789]

I had mine at wythenshawe to who's your surgeon? Xx

[Sally789 in reply to Kazzacrazy]

Mr Granato. Think there are 7 surgeons there.

X

[Daisybarnes]

I was just like you 18 months ago and understand your worries completely! The lymph node sampling is routine I believe and if clear could well mean you need no further treatment. That was the case for me. The op is managed so well by the amazing staff that I am sure you will feel in safe hands. Everyone says how lucky we are to be able to have surgery as it is the Gold standard treatment but it is difficult to feel very lucky at the stage you are at! Just focus on being without the cancer and at the other side of the op! Don't hesitate to ask any questions that crop up in your mind. Wishing you all the best.

[Sally789 in reply to Daisybarnes]

Thank you. I do feel slightly better today. Think my main problem is that I’m reading into things too much. Im suffering terrible anxiety which is affecting my sleep which in turn then makes you feel really low. I’m going to see a holistic therapist this afternoon to see if he can give me something to calm me down.

Again thank you so much for your words.

Eryl X

[arthurpops]

Hi, I had my upper left lobe removed 10 years ago and also had node sampling and it was fine and even though I had cancer in my right lung just over a year ago, I'm still doing great

[Sally789 in reply to arthurpops]

That’s very encouraging thank you for sharing.

Eryl X

[kri312]

It is totally normal and you will figure out how to live with it..will be good and bad days. I had 2 small stage 1 removed (r lobectomy and r upper wedge) 5 1/2 years ago (age 50).... no further treatment and after a few weeks was back at my full workout routine (hiked Machu Picchu and Patagonia this past year). You will be closely monitored and there will be anxiety around that each and every time....they just caught another very small one stage 1 a that developed within the scar tissue. I just had that removed via a segment removal on 10/18. I am back running - albeit slowly!! Because I am EGFR+ I am waiting to hear if I will be accepted into the current Adaura clinical trial for Stage 1 patients and the use of Osi - it has been a miracle drug for many with higher stages. Life will be different for sure - the mental aspect is the hardest (at least for me). I have learned to stop and smell the roses more and TRY really hard not to consume myself with the "what if it comes back again"! I try to remind myself that whatever time I have left I don't want that to be full of worry but with the people I love enjoying life! Keep us posted on your recovery!

[Sally789 in reply to kri312]

Well that’s a great update. Yes I need to think of plans for after to get back to normal.

I know I’m lucky that it’s been caught so early. My main problem is sleep but, I’m going to see a holistic man this after to see if he can give me something to help.

I will keep everyone posted

Thank you again

Eryl X

[kri312 in reply to Sally789]

Nights are the worse...too much time for the brain to think!!!! Good luck and get some rest!

[Sally789]

agree ! Just been to see a holistic therapist advised me to take vitamins C and D and also magnesium and most importantly start believing what you have been told and begin making plans of all the things you are going to do when this is over. Also gave me breathing exercises to calm me down when I wake in the night.

X

[Rosegarden100]

Hello

How are you feeling xx

[Sally789 in reply to Rosegarden100]

Since my message this morning I’ve had a chat with a lady who has been through what we have been through exactly a year ago. An ex nurse she is under same hospital as myself and, all of a sudden I feel a lot better. Feel like my mind is in a much better position !

XXX

[Sally789]

bit frightened. Think I will be ok once I get there as there will be lots going on, nurses around doing checks etc. I’ve been eating a lot this week trying to put a bit of weight on but because I’m a bit stressed and not sleeping well it’s not easy. Hope there are some nice people on the ward I can maybe chat to ? - operation Tuesday 5.

Last night I tried to think of all the things I want to do when I get home.

Seems most people recover quite well I wonder if a lot feel frightened like me.

I spoke to Ellen yesterday, she’s no nice and reassuring.

Thank you for messaging me

XXX

[Sally789]

By the way how is your pain now and what do you take, is it still where the drain was removed ?

XXX

[JanetteR57]

It's natural to be frightened - we all were in that state at some time or another. it is normal to sample lymph nodes to check it hasn't spread. It's good it's been found at a size/stage/location where surgery is possible. I had my upper left lobe and a 'large mass' removed in Dec and it took until mid January to find out it had been a 7cm adenocarcinoma - a type of non small cell lung cancer (I had no clue there were different types) . That was in 2011 - and I had open surgery whereas the majority now have keyhole (minimally invasive known as VATS or RATs). Wythenshawe has a good reputation and good follow up.

the booklet on Roy Castle lung foundation website is really helpful - packed with hints and tips from those of us who've been through it and updated regularly . it has suggested recovery milestones too but explains things in a way that is much clearer than often what medics explain when our minds are racing ten to the dozen.

Do the follow up breathing exercises/incentivising spirometer if you're given one - keep active - as much as you can - not running marathons but do keep moving - a few steps around the house/stairs/garden if you can - sitting/lying around is no good but moving even if it makes you cough/breathless is good as helps clear the lungs/redevelop the remaining lungs. It's perfectly natural to worry and that keep you awake - you will sleep when you need to.... herbal teas may help you.... camomile or 'twining sleep tea' which has apple and vanilla I think is nice. The fear of it returning is common but I found a couple of books really helped me - one is called 'anti-cancer a new way of life' by Dr Servan Schreiber and one is 'cancer is a word not a sentence' by Dr Rob Buckman - both helped me in different ways and I've reread them both and often recommend them to patients and relatives.

hopefully you'll soon be home and able to sleep in your own bed - I slept propped up with pillows but know some swear by v shaped pillows or recliners. I went to a lingerie shop and told to increase the band size by one size and wear a non wired bra which I've done ever since as the scar line was in line with the bra band for a wired one which were too uncomfortable. good luck with your recovery.

[Sally789 in reply to JanetteR57]

Thank you for your comments. I’m having VATS and feel lucky to be under Wythenshawe hospital. Funny the lady I spoke to yesterday suggested a V shaped pillow so that’s a thought. I slept better last night, woke at 5am but no where near as anxious. I found a good podcast about sleeping on BBC sounds, Michael Mosley, his voice helped me drift back off and he also gave some good breathing tips.

This HealthUnlocked site has been brilliant, so good to talk to people with the same condition.

I hope to give a really good update after my operation.

XXX

[excavator]

Great advice from all here. My experience was right lung removal in June 2014 following diagnosis of non small cell stage 2A at the time. Lymph node testing revealed trace in one adjacent node so I had adjuvant chemo. I'm very lucky to have been OK so far since. I second all comments regarding follow up exercises, walking etc. which doesn't feel easy at the time but really pays off in terms of long term recovery.

I wish you all the best.

[Sally789 in reply to excavator]

Thank you. I do love walking but recognise I’ll have to take it easy, moving a lot around the house sounds a good option. Do have stairs too which I think is a bonus.

XXX

[Rosegarden100]

Hello

how did your operation go and how are you feeling? Are you back home yet?

Rachel xxx

[Sally789 in reply to Rosegarden100]

Hi and yes operation done on Tuesday and I came home yesterday late afternoon. I’ve still got a drain attached as there is a very small air leak, district nurse coming tomorrow to change the dressing then next week it should be possible to remove it. Feel shattered but I’ve got my appetite back so I’ve really got to get going with the food. 8.30 am had a banana and porridge toast next. Going to get up and sit downstairs take it easy. The surgeon came round before I left and said very happy with how things had gone. So glad it’s over

Sarah - real name 🤣

[Rosegarden100]

well that’s all very good positive news. I’m so pleased you’re feeling alright. Let us know how you’re getting on next week and plenty of cake xxx

[Susie215]

glad you are home and doing ok. Which lobe did you have removed? Did the surgeon say your margins are clear? Squamous cell or adenocarcinoma

[Sally789 in reply to Susie215]

All the surgeon said was that everything had gone well. It was the right lower lobe. Apart from battling constipation I’m doing ok. Awoke the following morning after surgery and I was starving so, have been eating well. Only stopped in 2 nights so came home with the drain atta he’d, district nurse has been this morning and said wound looks nice and clean, looks like the amount of fluid coming out is decreasing so hopefully it will be removed on Thursday.

X

[Susie215]

sounds like you got lucky. So happy you are doing well. I had right upper lobe removed in February but margins weren’t totally clear so now they are trying to figure out how to treat cancer left at bronchial stump margin. Take your stool softeners regularly for the constipation

[Sally789]

it’s 6 days since my operation and I’m struggling a bit with appetite, not helped by being constipated. Has anyone ever taken any of the Ensure drinks ? I didn’t want to resort to them but maybe a good idea if I’m struggling to eat ?

Sally