Lung cancer surgery

[Martinet]

Just been diagnosed with cancer in upper left lobe. Awaiting surgery. Very anxious about op. Any advice for pre and post surgery. Many thanks

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Martinet

Welcome to the forum where am sure you will find support and encouragement.

Sorry to hear of your recent diagnosis and how difficult this must be for you and your family. Any surgery can be frightening and hopefully our lung surgery booklet will provide some reassuring answers that you are looking for. Our booklet provides information on what happens before and after surgery, including timelines of what to expect in your recovery: roycastle.org/app/uploads/2...

As you are awaiting your surgery, it may be advisable during this lockdown, to ensure that you continue to isolate at home and avoid going to the shops.

There is additional information for those with cancer, provided by a group of charities that have come together called 'One Cancer Voice' during this pandemic:

roycastle.org/covid-19/info...

If you wish to discuss anything you can either email us at [e-mail] or call our freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

[Guardamar]

Hello Martinet

I know how anxious you feel l had my op on the 12 march also has the left upper lobe removed. I was very scared, once l got to the hospital st georges l felt better after talking

to the doctors there.Its a major op but they do this every day.

When l was in the recovery room l did not have much pain beacuase of the medication.2 hours later l was sitting up having a lasagne. However sleeping is uncomfortable but you can press your morphine button.

It is 5 weeks since my op l am now walking every day in the park for at least 20minutes. I hope you have your operation soon to get it over with and you can then relax more. My thoughts are with you, hope all goes well let me know how you get on.

Guardamar

[Martinet in reply to Guardamar]

Hi guardamar

Thank you for replying. So good to hear of someone who has gone through the same. You sound as if you are doing very well. Hope your health continues to improve. Great to hear you are getting your walk in as well. Can I ask if you had keyhole surgery and how long you were in hospital for. Sending my best wishes to you

[Guardamar in reply to Martinet]

Hi there

I had vats surgery just three small incisions they have already healed. When you wake up you will have a drain in your side, this is not painful but akward, when you need to go to the toilet your medication drip and drain machine has to go with you so you need help. To difficult to do alone.

I had my drain removed on the 3rd day felt so much better after that.They were in a hurry to send me home as corona virus was in the hospital. I spent 4 nights in the hospital , on the 5th day my son a husband collected me. l was so happy to get home.

Are you having vats surgery?

Best wishes

Guardamar

[Martinet in reply to Guardamar]

Hi there

Thanks for getting back So quick. Any contact from anyone that has gone through the same is so helpful. So thank you so much. I am having vats hopefully. I’m going into Harefield Hospital to have it done. I’m just awaiting the call to go in. Had a telephone consultation yesterday with the consultant due to the virus situation which obviously adds to the anxiety 🤦🏻‍♀️ and of course no visitors either. I just want to get on with the operation now. Many thanks for replying, it means a lot. Sending best wishes to you.

[Denzie]

If you have a reclining chair plan to sleep in that for the first couple weeks. Tuck pillows in the side to support the rib cage and keep another at hand to hug if you need to cough or sneeze.

The vats is still trauma to your system and some intercostal nerves might be injured as they go through the ribs.

I wish you well. Do let us know how you tolerate surgery.

[Martinet in reply to Denzie]

Thank you for that advice. This helps to know what to expect. Wishing you well

[Daisysowner]

Hi MartinetI can give you my view “hot off the press” so to speak as I had a lobectomy on Wednesday this week and rather to my amazement came home yesterday! Like you, upper left lobe by VATS. Actually it was a huge relief as they thought it would have to be a pneumonectomy but discovered it hadn’t spread as far as feared. My biggest issue is that I can’t tolerate any opioids but actually paracetamol and ibuprofen - and a towel clutched under my arm like a security blanket - mean it’s manageable. Yesterday morning - so less than 3 days post surgery - I was walking unaided up a long corridor and doing stairs . It’s really helpful for me to read your other replies to give me an idea of how things will go from here. I slept in bed last night but with a pillow mountain! I live alone as my husband died of cancer 10 years ago but the hospital said I should not have anyone from another household to help because of Covid. But they were quite confident I could manage alone and so far they are right.

I do hope you get your surgery soon as the waiting is so grim. Please let me know how you get on - I’m sure it will be good

[Martinet in reply to Daisysowner]

Hi Daisysowner

Thanks foryour reply. Wow you are doing really well. Thanks for replying to me. It’s good to hear from people who have gone through it to know how to prepare. Hope you continue to progress. Keep me posted.

[Martinet in reply to Daisysowner]

Hi everyone. Posted on here 8 weeks ago after being diagnosed with upper left adenocarcinoma. Very anxious but had fantastic responses regarding surgery and recovery. I had my op on Wednesday 6 th May and am going home today 8th May. Feeling a little sore but glad to get that bit done. Now need to recover. Any tips would be gratefully received. Many thanks best wishes to all

[Daisysowner in reply to Martinet]

Hi Martinet

I’m so pleased to hear that you have had your surgery. I am now just over three weeks post surgery. I have to say that nothing to date has been as bad as I had anticipated! After I had a lung biopsy a few weeks before the surgery, my lung collapsed which was really painful. I’d assumed that actually removing half the lung would be similarly painful but it really hasn't been. Being alone at home has been completely manageable. I do still feel like a Duracell bunny - I am an early bird so I tend to get up and dressed quite early but by lunchtime/early afternoon I go and lie on my bed and often sleep which is very unlike me. I had assumed the cough would go along with the tumour and that hasn’t been the case. I have had a dip in spirits this week which I am told is to be expected - I think it is partly as the euphoria at having had the surgery and nothing having been as bad as I had expected, has now been replaced by the realisation that it may take a while to get back to what passes for normality. Some of this is probably just the consequence of isolation with full lockdown on my own.

I did get the good news last week that the biopsy on the lymph nodes they removed when I had the surgery was completely clear though there is a discussion to be had about whether I should still have some chemo because of the size of the tumour. I am waiting for a telephone appointment with an Oncologist.

Do let me know how you get on. I’m happy to share my experience if that is any help.

[Martinet in reply to Daisysowner]

Hi Daisyowner

Glad you are coping well in these extremely strange times. I like to am an early riser. So up this morning at 6. Waiting to go home. I don’t know what the next steps will be. How big was your tumour? How long was it fir your follow up appointment or did they tell you when you left hospital? Thank you for sharing your experience. It’s very very helpful. I am still coughing and is quite sore but I think thats to be expected. Just had the consultant around and I can go home today. Yippee. I would love to hear how you are coping and any tips! Thank you for replying.

[Daisysowner in reply to Martinet]

They had thought it was nearly 6cm but it turned out to be around 5cm and the rest was inflammation. I was absolutely gobsmacked and terrified in equal measure when I was told I could go home. I have not yet received the date for the follow up which I was told when I left hospital would be 6 weeks post surgery - it will be a telephone appointment.

I am a slow healer but the wound has now healed well. I put on a bra for the first time today! After the first few days, the pain - such as it is - has been weird - across the left side of my chest and almost a burning sensation. Luckily for me it has never been unmanageable as I can only take paracetamol and ibuprofen but that has been enough pretty much all of the time. After about the first 10 days I ended up with 5 days of steroids as I had a really “asthmatic” cough which made me very short of breath. That did help things settle down a bit though I’m still coughing.

I am really happy to help as I too just wanted to know what I might expect. It’s not knowing whether your symptoms are absolutely typical and you need to just get on with it, or whether you should seek advice. I know they say you can ring any time but I am always diffident about doing so as I think naturally we prefer not to trouble anyone.

So, do keep in touch and enjoy being home. I have now reduced my pillow mountain!

[RLP49]

Hi there

I had a VATS Lobectomy in December (lower left); had the op on the Tuesday and was home on the Friday. Guardamar has described what to expect with the drain etc and sounds like she had her surgery at the same hospital as me and the surgical team were brilliant.

I found a V pillow gave me the support I needed after the op. Also, my advice would be to keep taking the painkillers as long as you need them - I found that continuing to take them before bed for a few weeks helped me have a decent sleep.

Stairs will be tough at first but they get easier each day and you will be given breathing exercises to do as well.

All the best with your surgery and your recovery. If you’ve any other questions, feel free to ask.

Ruth

[Martinet in reply to RLP49]

Hi Ruth

Thanks for replying. Always good to get advice from someone that has gone through the same. Just very anxious with the waiting! Especially with the current situation. Your advice is very welcome. Thank you. Sending best wishes

[Mak216]

Hi Martinet,

I had lower RHS VATS surgery just over a year ago, and the advice above is very good. It's different for everyone, but the better prepared you are both physically and mentally the better your chances of an easier and fuller recovery. In addition to the above, I found yoga really helpful, even if it's only practising the full breathing and focussing the mind. You will have good days and bad days but a year later there are many more good ones than bad, so stay focussed on the end state.

Hoping all goes well for you.

Mike

[Martinet]

Thank you so much for your reply. So helpful.

[Vapcq]

Hi there. I had a right lower lobectomy in 2017. It was fine, yes it was sore, mainly because of the drain they put in but morphine was on tap at the touch of a button so really not too bad. Breathing and oxygen soon got pretty much back to normal, I still get breathless but that's only because I'm overweight and not an active person.

After a 'belt and braces' treatment of chemo and radiotherapy I've been clear of lung cancer since then. But of course you should always do the follow up scans to check all ok.

Good luck and don't be scared. The surgeons do this all the time.

[Martinet in reply to Vapcq]

Hi Vapcq

Thanks for your reply. Glad you hear you are doing well after chemo and radiotherapy. All these comments make me feel much less anxious. And just have to let the doctors take charge and go with it. Thank you

[VerdeAzul]

Hi Martinet,

I had my upper right lobe removed last July. Originally, the surgeons had planned for a VATS procedure, but when they got in, saw some scar tissue, so I ended up having a thoracotomy. Recovery took a little longer, but I progressed steadily.

Best advice I got before the surgery was to get a recliner. I slept on it for about 2 weeks, and then transitioned to a wedge pillow on my bed.

Initially, it was actually the two small incisions for the drain tubes that were most painful. Later, the discomfort from the large incision and the severed muscles and nerves was the most bothersome. Make sure to stay in touch with your doctors and support team. I was put on Gabapentin for that and it really helped.

Everyone is different, but as long as you stay ahead of the pain, and walk, walk, walk you will recuperate quite quickly.

When are you scheduled for your surgery? I had to wait about a month, and emotionally that was the hardest part. You will do great!

[Martinet]

Hi verde Azul

Thanks for your reply. I am lucky to have a recliner so will definitely use that. The consultant rang me last Thursday and said I would be called for the op in the next 1-2 weeks! This waiting is just the worst. How do people deal with this anxious wait? Glad you are doing well. Keep well

[JanetteR57]

Good idea for you to find out how to get fit/prepare for surgery. I had a thoracotomy for upper left lobe in Dec 2010 and asked my surgeon the same question. he asked what I usually did and I explained I swam 3 times a week. he told me to go swimming and was quite vexed when I said the hospital where I'd turned up in A&e almost 2 months earlier had told me to stay away from the humidity, chlorine and swimming so hadn't been. Anyway I went the night before surgery and the day of surgery. I was in hospital for 6 days and couldn't tolerate the morphine. I had a quite Xmas propped up with pillows. It's important to keep active (as much as possible before and post surgery) - appreciating that's more tricky due to lockdown. My surgeon told me that moving about whether indoors or out, would help redevelop what was left of the lung like a balloon inflating with a thinner surface but could almost replace what had been removed. I can vouch that happened. I was back at work after 3 months and swimming which although difficult resulted in me swimming much further (considerably so) than I'd ever done before. I used to swim 130 lengths each visit but within 18 months had managed a swim of 360 lengths (5 hours) and 980 miles throughout the year and 989 the following year. I read a book I found really useful called '`anticancer a new way of life' by Dr Servan Schreiber that made a lot of sense about lifestyle balance and 'cancer is a word not a sentence' by Dr Rob Buckman. Pain management is important - I came off meds too soon but it was also an era when little information was given and I also had few visitors - as it was the December we had all the snow so only had my partner and a couple of friends who lived locally visited once. In truth, I was glad of not having visitors but did find my mind going all over the place (and that was without morphine!). the lung surgery booklet on Roy Castle site is really useful (compiled with help from my local tertiary surgical centre and reviewed by patient panel (which I'm on). Good luck with your surgery and recovery.

[Martinet]

Hi janette

Thank you for replying. Wow. Your swimming is amazing. Well done you. All these comments on here are so helpful in easing the anxiety of what to expect. Wising you well

[Martinet in reply to Martinet]

Janette

Thank you for telling me about the books. Have just ordered them

[SAH1]

Hi, good luck with your surgery. I had removal of the right upper lobe by open surgery a little over three years ago, followed by adjuvent chemo. Still here, still kicking! I found the pain manageable, the worst pain was at night after I'd been sleeping for a few hours. Once home I spaced out the daytime meds so that I could take a dose in the wee small hours when I needed it. I had the operation on a Tuesday, was discharged on the Saturday. I was astonished how quickly I recovered once at home. I still lead a fairly active life (well, I usually do). I promise you there will be a time when lung cancer isn't the first thing you think about when you wake up in the morning.

[Martinet in reply to SAH1]

Hi SAH1

Thank you for your response So lovely that people bother to post on here. It really helps and your response is so positive. Wishing you well

[SAH1]

I found this site such a help when I was first diagnosed and reading posts from people who were thriving years after surgery, so I'm glad to do the same for others.

[Martinet]

That is so true. I’m sure I will do the same. It’s just this waiting fir surgery which is challenging also wondering how you will cope afterwards too. So lovely to hear positive things. So thank you

[Daisysowner]

Hi Martinet

I do hope you are doing ok now you are home.

[Martinet in reply to Daisysowner]

Hi Daisyowner

Thank you for enquiring how I’m doing. Yes doing ok thanks. Doing daily walks and pottering around. Actually much better than I feared. I wasn’t really told of any breathing exercises or how much walking I should be expected to do. Perhaps you can give me any advice on that please. Hope you are keeping well. Any advice is gratefully received. Many thanks

[Daisysowner]

Hi Martinet

The breathing exercise I was given couldn’t be simpler - there was only one which is to breathe in as deeply as you can through your nose - then sniff a couple of times which gets a little more air in- then hold it for a few seconds and breathe out. The physio in the hospital suggested doing that a few times a day regularly, each time for 5 breaths or so and then taking in as big a breath as you can and “huffing” as if you are trying to steam up a mirror. That helps you to cough up any grot. The exercise was sufficiently simple that I didn’t need to write it down!

I’ve been categorised as shielded vulnerable so going out for a walk isn’t an option. I really wish it was possible as I’d love some sort of measurable target. I am doing step ups on my stairs at home - today I managed 60 - as well as pottering in my house and garden. I started with ridiculously few and have been working up to that. The advice I received from the thoracic nurse on the phone a few days after the surgery was to try and do sufficient exercise of whatever sort to make me a little bit short of breath. I do hope that is of some help.

I do feel remarkably well to be honest. I think that has been mainly as I really have suffered very little pain - there is discomfort but nothing like I had feared. I do hope that it is the same for you

Best wishes and let me know if I can help with any thing else

[Martinet in reply to Daisysowner]

Sorry meant to ask you. Have you heard from your oncologist yet? Take care

[Martinet]

Thank you so much for replying. That was really helpful. You are doing really well. Well done for that. I will start doing those breathing exercises. Feel that I wasn’t given much advice on that which is a shame. I have my follow up appointment on the 2nd June so slightly anxious about that. I like you feel well and surprised how I feel although still taking painkillers. You take care of yourself and I really appreciate your help.

[Daisysowner]

Not as yet. I thought I might ring tomorrow to check the position. I have yet to receive the date of the follow up appointment with the surgeon either. Will yours be a face to face meeting or on the telephone?

[Martinet]

Oh goodness. It’s all a waiting game isn’t it. Oh I didn’t realise you hadn’t had your follow up yet. How long is it since your surgery now?

At the moment it says I have an appointment at the hospital but I expect that will change to telephone as it did before surgery. Hope you hear soon. Please keep in touch. Take care

[Daisysowner]

I wondered how you are doing? I decided to go for the adjuvant chemo that was offered. It isn’t a game changer but in my view anything which might stave off the return of this disease even by a small margin seemed to me to be a good thing. I started chemo last Friday - pretty poleaxed but just coming out the other side in time for tomorrow’s return match!

I hope your follow up was positive

[Martinet in reply to Daisysowner]

Hi Daisyowner

Thanks for replying. Sounds like your first session has gone ok. Wishing you all the best for those ahead of you. Have they said how many sessions you need. I am now 5 weeks post surgery and next appointment will be 3 month scan. Sending my best wishes. Keep in touch with your progress