Lung cancer advice needed

Thanks for the info Violet. Sorry to hear your experience wasn't too good and hope you feel better soon. 

As you can imagine I was devastated by the last minute cancellation. Guess the waiting game starts all over again. Doesn't do much for your mental wellbeing but hey ho. 

Kind regards

Trish xx

Hi Trish

I can't begin to imagine what you went through with the cancellation - it must have been devastating! I know it's not easy waiting but it looks like yours, like mine, has been caught early. I held onto that thought when I had to wait the 5 weeks for my operation.

Sending best wishes and positive thoughts,

Paula

Thanks Paula. It was devastating as I had got myself mentally prepared for thr op. I' guess it was in my best interests as the surgeon wasn't happy to do it without an HDU bed being available. They had just been overwhelmed with the number having to be admitted through A&E.

Feeling a bit more positive now and I'm sure they will do it as soon as they safely can. Mine was caught at an early stage so hopefully a couple of weeks will not make that much difference - that's what I keep telling myself anyway. 

When did you have your op and did it go well?

Best wishes

Trish xx

Hi Trish

Hi Trish,

I agree, a couple of more weeks shouldn't make that much difference. That is what I told myself when the surgery appointment didn't materialise when they said it would. I didn't go through the harrowing experience of a cancelled op at the 11th hour like you did. I was just waiting, turns out 3 weeks, later than expected. I'm so, so sorry you had to go through that...

I had my op on 15th December. It went well except I have an extreme intolerance to most painkillers - codeine, morphine, any Nsaid like aspirin, ibruprofen etc. I don't what they gave me after my op but I was away with the fairies, seeing the nurses floating at the ceiling and nonsensical writing on the wall which moved and writhed. Of course I couldn't do any of the post-op exercises in that state so they reduced the dose which resulted with me being in a lot of pain. I eventually managed to exercise with the pain but on the day I was due home I caught an infection which meant I had to stay longer. Only just made it home on Christmas Eve - Phew! The worst was I had a 5 1/2 hour journey home (we live in the northwest Scottish highlands).

I had three nsclc nodules in my top right lobe so I was down for a lobectomy. The surgeon told me after the surgery that there were only 2 of the nodules in the top lobe and that he found that the third one hiding in the middle lobe; he removed the top lobe plus that nodule, which I am grateful for, but I don't know which method he used. So now I am a little worried that he might have left some behind given it was an unexpected find and he had to do it on the spur of the moment without planning.

I am recovering well with the help of Oxycodone. I am an artist, which is very sedentary, so I use a stepper constantly and do lots of stretching. Apart from the first couple of hours after I wake up, I am pain-free for the first time in years (I suffer from fibromyalgia) thanks to my new best friend Oxycodone - paracetamol never quite did the trick. I know Oxycodone is addictive so I am deliberately only taking half the dose I am allowed.

So now I am playing the post op waiting game. Were the lymph nodes clear? What about the rogue nodule? 

Good luck with your op Trish. Can't stress enough how important those exercises are.

Paula xx

Hi Trish

I noticed that I have repeated myself. Sorry about that. I do worry with all this talk about people having an MRI of the brain. I didn't have that. Over the last few months my short term memory has become really bad and I get confused very easily. I think I will ask for the MRI in the follow up appointment. 

Sorry again for the repetition - it is very embarrassing.

Paula xx

Hi Laura

I don't think you have repeated yourself so don't be embarrassed.  I didn't have a brain or bone MRI either and every ache and pain I get makes me think it could be the cancer spreading.

Sounds as though you had a bit of a time of it with the meds but glad they got you sorted in the end - I dread having hallucinations and not being in control but I also dread being in pain - hope they can find the right level of meds for me so I am able to do the post op exercises ASAP as I do know how important they are. At least my journey home is only about 30 mins - 5 1/2 hours sound horrendous. 

Hope you don't have to wait too long for your follow up results - the waiting game does nothing for your mental well being but I'm sure your artwork is a calming distraction for you. Did they tell you how long it would be before they get back to you?  Did you have a biopsy before your op as I haven't had one as that was to be part of the op so I don't know what I'm dealing with at the moment.

I'm just hoping that I don't have to go through all the pre op tests again and that I won't have to wait too long for another appointment date. Just want it done and over with now.

Take care and stay in touch.

Trish xx

Hi Trish

If you don't have a problem with regular painkillers like morphine and codeine then you'll be fine. I think hallucinating is very rare and I wasn't on the painkiller they normally give so please don't let my experience worry you. The idea is to control the pain so that you can exercise. They are very keen on making sure you are not in pain. Once they reduced the dose I pretended I wasn't in pain - I didn't want to be in hospital any longer than necessary. Then at some point they gave me Oxycodone which really helped, and is continuing to help. The staff were wonderful.

They told me I would get the results in 4 to 6 weeks. I'm kinda thinking that no news is good news. I am lucky - I'm very good at burying my head in the sand when there is nothing I can do to hurry things.

I did have a biopsy done before the op as my consultant physician suspected it was cancer and even primed me for the PET scan because she said I was probably going to have to have one. The needle biopsy was painless. I was pretty scared but apart from a slight sting where they put the local anaesthetic to deaden the area the needle was going in, it was, like I said, painless.

Oh I do hope you get your date soon. Despite the hiccups in my experience of the op, I would have it again and not be at all scared of it. The worst thing was having to ring for a nurse every time I wanted to go to the toilet especially at night because I was aware the staff would be resting and I would be disturbing them. At least I had the privacy of going in by myself and locking the door.

I doubt very much they will leave you waiting long given you had your op cancelled.

Take care and keep in touch,

Paula xx

I never had an MRI for my lung cancer.  I didn't even have a PET for my lung cancer until they were trying to determine whether I'd had a recurrence after SBRT and wanted to avoid a biopsy if possible.  

Like you, my surgery plan was to remove one lobe but they actually removed a bubble from my upper lobe as well - not because it was suspicious for cancer but because it could eventually lead to a pneumothorax.

It seems to me that different health authorities do things very differently. Or maybe they are just tailoring things to the individual. I didn't have SBRT. My consultant physician knew mine was cancer and also knew it was a very early catch. Within a fortnight of seeing her I had had a lung biopsy and a PET scan both of which confirmed the nodules were cancerous. I had to wait a further 5 weeks for the op but I will be forever grateful for the speed of the scans and biopsy.

How are you now, post op?

They definitely tailor things to the individual here.  I had a PET both before and after my lymphoma treatment, so my lung cancer doctors knew prior to the biopsy that my lung mass hadn't grown and that it was low grade. 

My haematologist is the one who referred me to the lung clinic and I saw them a week later.  I had the biopsy a few days later and got the results less than a week later (I asked them to phone me with them).

I was suitable for both surgery and SBRT.  I chose SBRT because I was severely immunocompromised from chemo and covid had appeared.  Even though SBRT didn't work for me, I'm glad I didn't need to have surgery while immunocompromised.

Recovery from surgery took longer than I would have liked.  I still get weird sensations around the site of the operation but my surgeon was pretty sure I would have no breathing problems and he was right.

Strange as it may sound, I genuinely forget most of the time that I've had half of my left lung removed.