To not want to lose half my lung when they don't even know if I have cancer?

[stargirl04]

I have abnormal tissue in one of my lungs for which I've been under observation for a decade. No cancer detected and after a biopsy last summer it was diagnosed as benign calcified tissue.

Now I have a new growth of abnormal tissue, which was found about 7 months ago and biopsied at the same time. No cancer detected. So they continued observation.

I went back today for the results of my six-monthly chest CT scan and they say this third abnormality has grown significantly and I have 2 options:

1. Another biopsy within the week, or
2. Straight to surgery for a f**ing Lobectomy!

They told me the tissue is not "behaving" like a malignancy but could develop into a worse problem if left unchecked, for example, by spreading into my other lung. They've detected that the tissue in my lung has been bleeding but I haven't coughed up any blood and feel absolutely fine, apart from a slight cough.

They said the best case scenario is that they get a diagnosis from the biopsy and that it's an infection that can be treated with the appropriate drugs. The worst case scenario is malignancy, in which case I'll have surgery, but the other possibility is that they achieve no diagnosis from the biopsy and if this is the outcome, they want to do the lobectomy anyway to achieve a definitive diagnosis.

I've gone for the biopsy option but feel I don't have a choice in this and that they've already decided on their course of action. The hospital is a new purpose-built cancer centre and a university hospital, which is why they presumably want to diagnose it.

I feel totally freaked out and terrified.

Stargirl, your problem is the one you have to deal with -whether other people have bigger/different problems doesn't matter

You are the person dealing wth your problem & it is massive to you

I'm glad the nurse has explained things and I hope it becomes easier to make decisions as time passes & information is provided

Good luck OP! I really hope you're alright

Well done, gaining more control over the information will ale you feel better whatever option you finally decide on. Good luck tomorrow!

Oh I'm so please to hear that you are feeling a little more reassured. Good luck with the biopsy, I hope it gives some answers so that you make a better informed choice. Take care of yourself.

Hope you're doing OK, stargirl

Oh stargirl I was clutching imaginary pearls as I read your posts! I hope that by now you've received reassuring news from your surgeon and are able to not be quite so anxious.

Purely out of curiosity, is histoplasmosis one of the things they're looking for? I grew up in a region of the US (Ohio River Valley) where just about everyone gets it, yet I was one of the lucky few that ended up with calcified scarring in my lungs. A biopsy revealed its origins, but until then not only me but my entire family and a pretty decent chunk of the pulmonary faculty in the hospital were bricking it. As it turns out, it interferes some with function, but otherwise it's just a "fascinoma" - something that senior doctors use to confuse the new juniors when they roll round.

Hi MN-ers, I'm back from hospital. I suffered a pneumothorax (collapsed lung) during the lung biopsy yesterday morning, which I knew would happen as it has happened during each of my two previous lung biopsies.

This time, it didn't resolve itself, but got worse and I had to have a second procedure to drain my collapsed lung of air. I was kept in overnight and discharged late this afternoon.

But I learned some interesting information from the doctor performing the biopsy - the same doctor who carried out my previous procedure six months ago.

She said was surprised that my consultant wanted to go straight for surgery when he didn't have a diagnosis. She said that, in my position, she would have made the same decision I did.

Then I lay on the CT scanner ready for the procedure, and she said she wanted to take some new pictures of the suspicious nodule first, and went off to do so with another doctor.

After some time she came out and said: "I'm in two minds whether to go ahead with the biopsy because it looks as though the lesion has improved. The blood has cleared up and the hazy, milky appearance around it has gone too. But it is still bigger."

I said, "I'm lying here, so if you want to go ahead I'm fine with that."

She said: "Yes, but we might just get the same result as before (no malignancy but scar tissue detected). Then said something like: "Well, if we do, it will confirm the previous findings."

Had I known then that I would have a full-on lung collapse that would need a chest drain I'd have said: "Yeah, you're right. Let's forget it." !!!!

So she pressed ahead.

So I got back home tonight and called my friend, a former A&E nurse and she was horrified that my consultant wanted to go straight for surgery when he didn't have a diagnosis, saying he was: "using a sledgehammer to crack a walnut".

Then she warned me about all the downsides, said it was major surgery that carried a lot of risks and that it would reduce my lung function and I am already asthmatic. She said I needed to seriously think about how that would affect my quality of life with reduced breathing capacity as an asthmatic. Which has made me think "No way!"

Hi, me again. Gosh, I feel as if I'm on a rollercoaster.

I've spent the last few hours reading stuff on the internet after Googling "growing lung lesion" and, finally, I understand why my consultant is pressing for surgery asap.

The information I've read, across different articles and websites, about the rates of growth for lung nodules puts mine within the highest risk percentage for malignancy. Finally, I'm realising not only why he wants to go straight for surgery but the urgency behind it too.

Perhaps this biopsy will shed some light on the matter as the biopsy doctor told me she'd got all the samples she needed, in plenty of time, and got right into the centre of the lesion. (Good to know my lung collapse and chest drain weren't in vain, lol)

So now I'm starting to believe it might be malignant. However, the consultant said its characteristics and behaviour weren't typical of a malignant mass. So the mystery continues......

I guess I'll find out soon enough.

Sorry Proginoskas, meant to answer earlier - that particular infection/whatever has not been mentioned at all but it's an interesting idea and, I guess, possible as I suffered pneumonia a year ago and all this flared up right after that.

Thanks for your thoughts Shovetheholly, Mycatstrying, Booboos, TheCatsMeow, Katymac, Margot and everyone else. Also thanks to the medical folk who've given me very good advice - Jacks, HicDragonis and others.

oh star, in the kindest possible way, I think your friend may have given some pretty loaded advice which was not necessarily helpful or especially accurate.

Lung function can deteriorate after lobectomy, but it is not definitely the case. There are no guarantees either way. I understand that as a former A&E nurse, she will have lots of experience, but don't think she has it right on this one.
I would probably go with the advice of someone who is a specialist in this case.

Especially when your consultant has taken your case to the MDT- your case will have been discussed by several respiratory specialists, radiologist, surgeons (and sometimes oncologists) at this MDT. They will have looked at your scans and any other test results. Together, the team will have used their combined knowledge and experience to come to a conclusion and suggest the best way forward for you. This is what we do at our MDTs. Nobody suggests major surgery lightly or on a whim.

I think the biopsy was a reasonable choice. Sorry you've had such a terrible time of it though.

At the end of the day, if you don't agree with the treatment recommended by your consultant your are entitled to seek a second opinion.

Thanks jacks. I understand your point about my friend's advice. And yes, I will speak to the experts about my concerns regarding asthma and other things.

I am coming round to my consultant's way of thinking, I think - just terrified at the prospect of radical surgery and the possible long-term side effects. If only someone could wave a magic wand and the lobectomy was done, with no nasty side-effects!

I'll see what happens at the next clinic appointment when I get the results of the biopsy, and take it from there, I think. And I have someone in mind for the second opinion, too. Thanks for your help.

Ñothing medically useful to add but wanted to mention my grandad. He was a coal miner who had half a lung removed. He actually went back to the coalface afterwards. The union did sort out a compromise of early retirement eventually and he lived past 75. But it was something he lived well with!

Your granddad did well, Giddy, and good to know!

OP, I was you one year ago. I remember being absolutely terrified I was going to die - - and coming to terms with treatment I did not want and going through it.

Do you have to attend work at the moment - people get signed off for much less serious things.i kept going to work until shortly before my treatment and looking back now I think I was silly to do that as I was under huge stress and very emotional - trying to hold back tears as I sat at my desk.

I would definitely listen to your consultant and follow his advice rather than basing your decision in what your friend has said or based on what you read yourself on the internet. I would follow his recommendations too although I know it sounds daunting

OP I know it's scary but I think you're doing the right thing.

Oh star - how frustrating and confusing for you to have been given such different advice! You must feel pulled in all directions at the moment.

For what it's worth, I think you're dealing with this the right way. I know that uncertainty can be the hardest thing to deal with - but sometimes it takes just a little time to come to a decision, as you speak to different people, hear different perspectives, and weigh them up in your own mind. It is a big decision, and it really took guts for you not just to go along with what the doctor said, but to pull back and say 'Hey, it's my body and my decision, and I want to know a bit more before I decide!. I also really admire the way you're doing your research to find out more while keeping a weather eye on the fact that the clock is ticking and you need to reach a decision soon. Everything you're saying makes perfect sense. You're being so brave and so sensible!

I'm so sorry you suffered the collapsed lung - it must have been painful and scary. I hope you're in less discomfort today. You must be very tired, so please be gentle to yourself.

Fingers crossed for good results from the biopsy. I think you are doing the right thing finding out more information and it might be worth writing down a list of questions you want to ask at your next appointment that might help you make a decision regarding surgery if it comes to that. I hope it does come to that though.

Really glad that you are feeling a little better about things and hope (in the best way) that the biopsy result shows something that can be treated rather than no answers. Sorry about the pneumothorax though!

I do think your A&E nurse friend is speaking out of turn. None of us, without being specialists without full access to you, your medical history, scans, histology, can make any sort of decent opinion. Do ask about her concerns, they are reasonable and should be considered, but it is impossible without all that information to dismiss things out of hand.

Before paying for a second opinion, do just ask about one on the NHS though. Depending on where you are, there are likely other NHS consultants in the same or a nearby hospital who would be able to go through everything with fresh eyes.

Thanks for your kind words and support, guys. I woke up this morning with the words of a doctor on a US internet forum ringing in my ears "A growing lung lesion really needs to come out".

So I revisited the page and clicked on the doctor's profile, curious about his credentials. He studied, qualified and did further research at Princeton, Cambridge and Harvard universities, and is now director of lung cancer at a US health facility and is an internationally renowned expert blah-di-blah. So, good PR aside, seemingly not your average guy - I so wanted him to be! Because then I could say, "Well, that's just his opinion, who's he?" Lol!

Incidentally, and sorry to drip feed, but I am under the care of doctors at the UCLH in London, specifically in the Macmillan Cancer Centre wing - so not exactly slouches themselves, lol. A purpose-built facility that's only a few years old, sited right opposite the national institute for cancer research, and my lovely doctor (he is SOOOO nice, but young nevertheless) is director of just about everything there and has so many qualifications he would need three houses to display them in.

I know at this point you are all going to roll your eyes and go "Oh FFS OP...." I know, I know. I've just been in such a panic-stricken fog of denial and despair that I managed to forget I was being treated in a place that's, er, rather good.

Hi DinoSnores, I would prefer to get a second opinion on the NHS but you're playing a waiting game. Whereas with the guy at the Royal Brompton I could pay privately and be seen within days.

In fact, I've just rung my GP to get the ball rolling and they tell me they can't fit me in till next Tuesday. I've explained the situation and they understand it is time-critical but say they're sorry and haven't anything before then. That's good old NHS GP surgeries for you ;-)

They said I could try ringing Monday morning for a cancellation. They also said they could get an on-call doctor to ring me as an emergency today
but I declined because I am not at present a medical emergency and, morally, I might be taking that time away from somebody who is. So I've accepted the Tuesday appointment.

I also spoke about the second opinion option with one of the doctors looking after me on the ward yesterday and he said the Royal Brompton was among the best in the UK for heart and lung treatment but not necessarily for lung cancer.

It sounds like you're very close to a decision, stargirl !

UCLH are really, really good. You're in excellent hands. And your doctor may not be quite as young as you think either - in fact, he almost certainly isn't if he's studied in all those places! Even the brightest take some time to get a PhD. Don't forget that as a specialist he'll have seen thousands of patients already. Some people these days just look ten or fifteen years younger than they are (my DH is like this, it's annoying!!).

I'm not saying 'Don't get a second opinion' - but don't forget that the opinion you've already got isn't just one person's. It's the result of an MDT discussion between all the staff. I realise this is a really stupid question so feel free to give me a slap, but have you tried phoning the specialist nurses at UCLH and asking them how long it would take to get another doctor to look at your notes? It might just be a question of someone being able to call you back quite quickly.

Hi shovetheholly, sorry if I gave the wrong impression, which clearly I did. No, my lovely UCLH doctor didn't go to Harvard and Cambridge - they were the credentials of an American doctor on a US internet forum talking about lung nodules.

My nice, young-looking, doctor is nevertheless very well qualified and trained at various hospitals, including Harefields and the Royal Brompton, but is clearly very senior in his field, I've discovered - a couple of years ago he was interviewed by Robert Peston, who was making a documentary about lung cancer.

I think he's actually around my age but looks much younger - I'm 50.

And no, I hadn't thought about what you suggest - which is not a silly question at all!! I'd just assumed that a doctor at the same hospital would be of the same or similar opinion, given that they're probably all in the same MDT each week, where they arrive at a consensus, as I understand it.

Stargirl, just read your thread. I think you're doing the right thing by reading and researching for yourself.

Hi PagesOfABook - I'm feeling a bit more stable right now. I don't know why. Maybe it's the calm before the storm. Maybe it's because I know I can't really do much until I go back to the clinic on Feb 1, so I have a bit of thinking time.

Right now, I'm okay, but if I sink again, which I will, I'll bear it in mind. Thanks xxx

Oh, oh, ohhhh, I read back your post and it's really clear that you're talking about an American doctor! I'm just being dim . It's been a long week - that's my excuse, and I'm sticking to it!!

And yeah, with regard to your doctor (now I've sorted out the difference) I think you probably have to be pretty good to get an interview like that!

I don't know if every lung specialist at the hospital will be at the one MDT - I am no expert on this (so very, very possibly wrong - maybe someone with some actual knowledge can help), but I thought the emphasis was more on 'multi' than 'disciplinary' - so that rather than it being a lot of people with the same expertise in one room, it's a lot of people with different expertises IYSWIM. So, for example, instead of all the lung doctors being in one room, you get, for example, a surgeon, a histopathologist, a specialist nurse, an oncologist etc. all together. If I'm not talking out of my hat (and I'm far from sure about this) - then it should be relatively easy to find a lung specialist who wasn't in attendance to ask.

Anecdotally, having seen someone in my family much older than you are go through severe lung issues, I definitely think with any lung abnormality, they want to move quickly and for good reason. There is a difference, though, between quick and rushed that is really, really important - and it's not a matter of time but psychological wellbeing.

Sorry, that should be 'it should be relatively easy to find a lung specialist at UCLH who wasn't in attendance to ask'.