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.

Been thinking of you OP and so sorry to hear you had a rough time with the biopsy. I had a collapsed lung following my surgery and know how painful and frightening it was.

Sounds like you have really made some progress in terms of research. Will be really interesting to hear if the second opinion backs up your Consultant.

Hope you are feeling ok now and have some time to relax over the weekend?

I've been thinking of you OP. When you mentioned Sydney, it rang a bell. Had you been to the blue mountains at all when you were there?

I only ask as I know someone here that had been in the BM and picked up some kind of microorganism that had been dormant, but has now been growing in her lungs. She is at a mayo clinic and they have been unable to pinpoint what it is exactly, but she has had to have 2 ops to cut away part of her lungs, and is still being monitored. She seems to be doing well at the moment.

That I'd just mention it. I hope you find out what it is and are able to be treated successfully

shovetheholly - I will definitely enquire about your idea of getting a second opinion this way through my nice lung surgery nurse. She is so helpful and may know of someone I can talk to - in fact she might even have suggested this herself. I vaguely recall that one of the medical team at the hospital yesterday advised me to speak to the surgeon who would carry out the procedure but can't remember if it was her or the doctor looking after me.

I hope your older relative is okay.

HerRoyalNotness and Coper, sorry - for some reason I didn't see your posts. Sometimes I write a post, then get distracted and go off and do something else for a bit, then come back and press "Post message", so that's what must have happened.

HerRoyal, yes I did go to the Blue Mountains when I was in Sydney! However, I went there with two friends and they were fine - we all did the same walk - and they had no subsequent lung problems at all.

Coper - I thought I may as well wait till the biopsy results before getting a second opinion. I've started the ball rolling by getting a GP appointment for the referral, and will speak to the lung nurse on Monday about getting another specialist to review my case. I still have the option of going private, which I may well do - I've spent £300 on far more frivolous things than my lungs in the past. Sorry to hear you suffered a collapsed lung too - having a chest drain in is bloody painful isn't it?

Framey and everyone else who has posted - thanks so much for your your thoughts and good wishes. I'm still quite calm today - I'm sure that'll change though.

I lost 5lbs last week through being worried/upset, then being in hospital. I know I'm feeling better now as I'm eating choccie biscuits again!

Glad to hear your eating chocolate biscuits again

Glad you feel better OP, keep us updated

star, your consultant might be able to suggest someone, either in the same or a nearby hospital, without the need for an extra GP appointment, like shove suggests, so speaking to the specialist nurse tomorrow is a good (and cheaper!) first step. That's what we would do anyway.

The surgeon won't operate without having a chat with you anyway to discuss it all, so there will be some sort of second opinion there. Indeed, he was probably at the MDT and part of the decision making in the first place.

shove isn't quite talking out of her hat but there are normally quite a few of each discipline at each MDT.

There are normally lots of different people at the MDT because we all 'bring' our patients to discuss, so Dr A discusses her patients with everyone, Dr B discusses his, Dr C discusses hers.

At one MDT in my hospital, a tertiary referral centre, we discuss every case of a certain condition in the region (6 counties worth) with all the relevant medical and surgical consultants, the radiologists who report all of our specialist scans, and a histopathologist or two, with the hospitals on a conference call, so there are LOADS of us there!

Sorry Dinosnores, I've only just seen your post. I've been in a bit of a social and work whirl the last few days, and since then have been doing my own research about the surgery, which I'm coming round to the idea of.

I didn't get round to ringing the nurse back as I probably found the answers I was looking for online. And through discussing it with family and friends. I'm kind of less inclined to go for the second opinion privately now, too, and maybe just speak to someone through my own consultant and the lung surgery nurse, as you suggest. However, I've decided it's not worth doing that until I've had my results next Monday.

I've been reading some online health forums specifically for lung disease and lung operations and these have provided me with a great many answers - and reassurance that others cope, and so will I.

It's comforting to know that there are lots of professionals at the MDTs and I know that the surgeon who would perform the operation discussed my case at the MDT. My consultant told me last week - when delivering the news about my growing lung nodule - that this surgeon "thinks he will end up taking it out anyway". (My upper right lung lobe.) Sigh.... increasingly I feel as though it is inevitable.

A dear friend who I've known about 40 years came to see me yesterday and we discussed it at length. She, like my family members, wants me to have the operation "to be on the safe side". I guess if I don't have it I am rolling the dice.....

Then again, it all depends on the biopsy results and I will find that information out this coming Monday. Those results may change things. Who knows?

I am hoping that if I do have surgery, I will be back at work in six weeks or so as I am freelance, so don't get sick pay. I'm really hoping though, that the keyhole surgery option is viable, because if it "turns" into an open thoracotomy it will be more like 4 months off work, which will be very difficult financially.

Thanks for your thoughts, Dinosnores, Framey and CatsMeow.