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.

Cabin crew (so folk flying a lot) are allowed to work following a lobectomy (one lung lobe removed) or a pneumonectomy (whole lung removed) assuming that the rest of their tests are fine, so I'm guessing that minicooperlover's DM likely had other concerns to get that advice (perhaps something that emphysema/COPD). It certainly isn't a normal blanket rule for passengers.

www.caa.co.uk/Passengers/Before-you-fly/Am-I-fit-to-fly/Guidance-for-health-professionals/Respiratory-disease/

www.caa.co.uk/Aeromedical-Examiners/Medical-standards/Cabin-Crew/Cabin-Crew-Medical-Report/

Of course am happy for you to PM me OP.

A relative of mine had half a lung removed due to a growth of unknown aetiology. It turned out to be pre aligns so possibly it was unnecessary but he didn't seem to regret it. It was quite major surgery to recover from but he has some other quite serious medical problems and is also very overweight.

I can report that he has recently completed a world tour taking eight months and had no problems with flying at all. He does get a bit breathless at times but that could well be due to his other issues.

Good luck with your investigations and decisions. Hopefully good doctors will guide you and you will have all the support you need.

Pre malignant.

OP

I can appreciate your worries- you feel well and it must be scary to be potentially facing surgery when you feel fine and there is no definitive diagnosis.

However, I second what HicDraconis said. If you really aren't sure, then by all means ask for a second opinion. It can be hard to take in everything when you are given news like this, it is normal to be floored. If you have the nurses number, use it. Talk this through with her.

Even if it is not cancerous, there are many other serious lung diseases out there. Whatever "it" is, it's getting bigger and it is bleeding into your lungs, so even if it is not cancerous it is likely to be doing some damage. Your Dr won't be doing this for fun, this is their advice based on evidence and previous experience. Of course it is your decision at the end of the day.

Also, it may be worth bearing in mind one of the limitations of a biopsy is that it is exactly that- a small sample of tissue and it is possible that the lack of definitive diagnosis is reflective of this (particularly if the mass is heterogenous tissue). And this may be why even if the biopsy doesn't give a firm diagnosis your Dr has said they would advise a lobectomy.

Thanks to all those who've so kindly posted and given such considered and knowledgeable responses, and revealed sensitive information. I appreciate this deeply.

I've just got home from work. I poured a HUGE gin and tonic, thinking it would calm me down but I am sitting on my sofa sobbing.

I was useless at work tonight for the first two or three hours as I went there straight from the hospital. I'm sure people noticed. I'm normally quite cheerful and work swiftly. My poor colleague ended up doing much more work during this time, but somehow as the night wore on I managed to pull myself together and knuckle down.

I feel a mess. Helpless. Almost as though I've regressed to being about age 1 again and snuffling and shaking in that way kids do when they become hysterical after a tantrum or a shock, such as falling over and banging their heads.

I read that if I have this surgery I will have reduced lung function and will experience breathlessness. I am already asthmatic, although it's very well controlled and I've done sport all my life. I haven't had an asthma attack in years and really don't relish the prospect of feeling breathless again.

I go to the gym two or three times a week and go swimming and hiking, including hill walking, and I can't bear the thought of all that stopping. I was even hoping to take up squash again soon, as I used to play in a league years ago. I am also a frequent long-haul traveller, although it appears this might not be affected, from what PPs have said.

Incidentally, I have a holiday booked in March to see the northern lights with two friends who live in another European country. I am dreading telling them that I probably won't be able to go. They are good friends and great people and they will understand, but I really hate the thought of disappointing them.

I'll just carry on reading all I can. Maybe knowledge will make the fear go away.

Hi sorry this is so scary for you star. My father had organs removed before cancer was diagnosed as the growths were still dangerous and docs said could turn cancerous any time. Agree ask more questions and personally I'd have faith in your consultants. Good luck love

You may not be short of breath or have reduced lung function after the surgery - it's likely that whatever is growing there isn't contributing to your lung function in any case, so removing it may make little difference.

This is definitely something to discuss with your chest team.

Healthy lung often expands to fill the space available when part of a lung is removed. I anaesthetised someone recently who had had a lobectomy (TB) decades previously and I couldn't tell by listening to her chest at all. The scar did give it away mind you. She had recently completed a week's hiking in mountains, no issues at all.

Echo what Hic said. Because my lung was barely functioning, if anything the lobectomy improved lung function. I think the remaining lung has expanded over time in my case also.

YABU. My aunt passed away from lung cancer having never smoked, at 53. It had spread when they found it so they couldn't take her lung out. They thought hers was an infection too.

I understand you're scared but it makes much more sense to do a preventative surgery because it's so hard to treat!

I think that, very understandably, you are having trouble accepting the situation you are in. Can you go back to the hospital with a list of questions to help you clarify your options? Of course no one can make you have the surgery, your treatment (or no treatment) is your choice, but it does seem to me that your situation now is crucially different that it was all those years ago. Can you try and get the doctors to explain the implications of the fact that the lump is growing? It seems a crucial factor in their suggestion to operate. Also it might be worth getting the doctors to explain how long you have to make a decision, i.e. is it likely the lump will grow in a matter of hours, days, weeks or months?

My DH had half his lung removed 8 days ago. 33 years old, very fit, very healthy, keen cyclist (100 milers were a doddle), never smoked, but following a bout of unexpected and very severe pneumonia in November, he was diagnosed with lung cancer. The surgeon is hopeful that the surgery will be the end of it and that they got everything, we will know more next week.

He is upstairs now, recovering after being discharged just 4 days after the surgery. It is a major operation and he is adjusting to the pain and exhaustion. But hebis recovering and quickly, the doctors say that is entirely down to his age and fitness. The remaining lung is expanding nicely into the space and he should be relatively well again in 8-12 weeks. He can start cycling again after that time.

The point I am making is, that he was angry, upset, resentful towards anyone who smoked, and terrified, and he still is. YANBU to feel the way you do. It is utterly fucking horrible. The surgery is drastic, and life changing. If you can afford to pay to get a second opinion then you definitely should. But if that opinion confirms that of your current doctors, then do not give up hope. The pope only has lung (a million people have told us that as if it helps). You have youth and fitness on your side. It is just shit in the mean time.

Thanks so much for posting all your experiences and thoughts everyone - they are really helpful and I really appreciate people's concern.

Does anyone know how I get a second opinion swiftly? I understand that I'm supposed to go back to my GP for a new referral elsewhere but that could take forever!

Does anyone have any idea what it would cost me to get this second opinion privately? Presumably, my hospital could email all the scan results to them etc, so there would be no need for new scans.

Margot, I am really sorry to hear about your husband - that is really rough luck and no wonder he feels the way he does. I am a lifelong non-smoker but not young at 50. I'm not as fit either - I force myself to go to the gym, swim and walk partly to keep my weight under control (and even then I don't overdo it at the gym . I am within my healthy weight range (just).

Booboostwo has hit the nail on the head - I'm having difficulty accepting the situation and not convinced I need this surgery. Mainly because the doctor said the tissue was behaving like an infection - I'm having trouble accepting it can't be treated with drugs.

I also take the points made by thecatsmeow and throwingshade that an infection may turn cancerous, which I am weighing heavily.

Sorry if I am being ungrateful, stupid, dumb and totally unreasonable here but it is just me venting and in denial: the doctor (who is worryingly young) said he felt "compelled" to diagnose it. Well, that's just great! He and his 20 or so colleagues at the weekly MDT (meeting of doctors/medical professionals/medical students etc) can sit and discuss my case as a fascinating experiment but I am not a rat for dissection in a biology lab. This is my body and my life, and my lungs are the only ones I will ever get.

Sorry for this stupid, ungrateful rant. The doctor is my regular consultant and is lovely (sorry, lovely doctor ).

The problem is, I feel great! I have no symptoms, no pain, no shortness of breath and I have not coughed up any blood. I have had occasional nosebleeds all my life and remember having one around the time of my follow-up CT scan just before Christmas and am wondering if the blood detected in my lungs was as a result of that?

I read that you can cough up blood even just with bronchitis and in that case it is not serious and resolves itself. How do the doctors know that isn't the reason?

As I understand it, this suspicious tissue is about 1cm long, whereas six months ago it was about half a cm or just over. But after non-invasive treatment who's to say it won't shrink back again?

I'm wondering now, if the news had come from a grey-haired doctor clearly in his 50s or 60s, who said, "In my 30/odd years of experience, etc, these occurrences tend to develop into worse problems further down the line and there is a strong likelihood they expose you to an increased risk of cancer" etc. Maybe I would I have accepted it a bit better?

The consultation felt as though it passed in a blur. I am waiting for a date for a further biopsy now, which was presented to me as an alternative option.

titsalinabumsquash, thinking of you and your DS . I really hope it all goes well.

On the other hand, I take the point made by a PP about the comparison with the faulty breast cancer gene, and people such as Angelina Jolie choosing to take preventative action.

I realise that, with all factors taken into consideration - of which I'm not aware but the doctors are - that it may be the best course of action. It's just that I'm having a hard time coming to terms with it.

I'm just a great big, crybaby sissy. I slept about 3 hours last night. Then this morning I've had the opportunity to call the nurse but instead hid under the covers and tried to go back to sleep, so that I could ignore it.

I've at least started writing down my questions to ask the nurse, thanks to you folks on here.

stargirl - for you. It's huge, life-changing news. (And for margot too. I'm always amazed how many calm, brave women there are on this site).

I'm not a medical expert. What screams out to me from your posts is that firstly, you're in shock; and secondly, you need a little bit more time to decide where to go from here; and thirdly, part of the difficulty you're having processing this is that right this second you don't feel sick, so that makes it really hard to accept that something might be going 'wrong' with your body.

Anyone in your shoes might well feel the same. I don't think you should apologise or in any way feel bad for being angry, frustrated, upset, confused or any other emotion! I also think that you sound like the kind of person who needs to know information to make a decision - it's not that you don't trust the doctors, but you could use some additional data to help you to come to terms with this.

I think it might be helpful for you to discuss this all with another medical professional, maybe that nurse, preferably with a big cup of builders' tea to hand. It might help you to hear from a medical professional:

1. why they are rushing you into surgery before they've got a definite diagnosis from a biopsy (the answer they give, and there are several very legitimate ones such as the speed at which a worst case scenario might take hold, may help you as you decide what it's best to do next)

1. what the after-effects of the surgery are likely to be, i.e. not the endless risk factors and one in ten thousand chances that they have to reel off before any operation, but the likely impact on your health and respiration and sports activities based on similar operations on similar people.

The fact that it has been discussed, likely at great length, with a number of respiratory consultants (some of whom will be grey-haired and in their 50s and 60s ), along with radiologists, pathologists, cancer specialists at the MDT is reassuring. Your case will have been gone over and over in an attempt to diagnose you or to be reassured that nothing untoward is happening.

Just to explain, that meeting is just to get all the relevant specialists in the same room and to get everyone's opinions before moving forward, to save lots of separate chats. When we do an MDT, the pathologist shows slides, other pathologists contribute their experience in similar cases and disagrees if they think it might be something different. The radiologists do similar, the surgeons agree or disagree about the surgical plan, the physicians discuss the best treatment. It isn't just you being a lab rat, but people really trying to find the best treatment for you, very specifically.

Seeking a second opinion from one of other consultants in the same hospital might be helpful to you to reassure yourself that everything has been thought of.

It is going to be impossible to completely say what your after effects are likely to be, as shovetheholly suggests, because it is impossible to tell. Some people do better post-operatively because the healthy lung expands into that space, some people don't.

Do ask lots of questions though, even if the answer from the doctors might be, "I don't know."

Also, if you have a holiday booked for March, ask if things can be postponed until after that, giving a bit of time for non invasive treatment, wait and see. [NOT medical advice as I don't know anything about your particular case!] Sometimes it can, sometimes it can't, but worth asking about it.

Thanks shovetheholly and Dinosnores.

I just rang the nurse, only to find out that they have booked me in for a biopsy tomorrow morning, but nobody has rung me yet about this.

I just rang the Royal Brompton in London and they charge £300 for a consultation with the most senior lung specialist there. That's only for an initial consultation but if I had my scan result already he could probably give his opinion in that one consultation. They said that if I went ahead with it I'd need to get my scan results from my current hospital on a CD.

I am under the Brompton and highly rate the care I received, and I know this echos what other posters have said. How big a deal would the £300 for you, and did you note which Lung Specialist you would see?

Hi CoperCabana, I've got the money for the private consultation, but wouldn't be able to afford to continue the care privately for thousands of pounds.

I haven't PM'd you yet. I will do so right now.

Gosh, that's a surprise about the biopsy. How do you feel about it OP? And how are you doing more generally?

(And thanks for clearing up that second question I had dinosnores. I love your advice - it's reassuring and knowledgeable all at once)

OP have a look at this link on the BRAIN acronym - it's a way of deciding on your care that is often told to pregnant women, but I really think it's worth working through for you too:

anthrodoula.blogspot.co.uk/2011/06/informed-choice-and-brain-acronym.html?m=1

Briefly:

Benefits - What are the benefits of this procedure? How will this help me?

Risks - What are the risks of this procedure? How might this negatively affect me?

Alternatives - Are there alternatives to this procedure? Are there other options?

Intuition - What is my gut feeling about this?
Need Time, or Nothing - Can I delay this procedure and take some time to think about it/Discuss it with family? What will happen if I choose to do nothing for now?

Asking those questions and writing the answers down might help clarify it for you?

Best of luck

My mum had one lung out over 25 years ago, it's not stopped her doing anything she wanted to do she walks at least 5 miles normally more every day. The only thing she's not been able to do is go mountain climbing (not something she would do !!)

Her lung didn't expand into the space, something about a muscle/nerve they cut by mistake (was a long time ago) and other than it being a bugger to shift if she gets a chest infection she's fine.

I may be completely wrong but the impression I get is that you have not been fully informed about the situation and your options. This is not a criticism of anyone, just an understandable by-product of the fact that this is a complex medical issue that has come as a surprise to you.

Are you inclined to go for the biopsy tomorrow? Could you talk with the surgeon who is performing it to clarify why they are recommending lung removal? Then try to see the London consultant asap for a second opinion and make a decision?

Hi kind MNers. I am having the biopsy tomorrow morning, much sooner than I expected to. I spoke to a great lung surgery nurse who was really understanding and is going to chase up lots of info for me and send it to me by email. She really calmed me down. I know there are loads of people much worse off than me and I do feel ridiculous getting into such a state about it. She even read parts of the latest report to me over the phone that was discussed at the MDT. She said I shouldn't feel rushed into a decision about surgery. I'm so glad I spoke to her as I feel I can go to work now and function without being a tearful mess. I am on my way there now and face my first conversation about it with one of the bosses who has asked me to cover temporarily for someone during the time when I might be recovering from surgery. Can't see so well on my little phone screen but thanks to all PPs for your help and insights. I will look up the Brain advice and contact the British Lung folks too when I get a chance.

There is lots of great advice here.I agree with the PP that said you sound a bit shocked still. I would say 50 is still young and you sound pretty fit. Also it really does help to speak to others with similar experiences.

Thanks to you and the PPs for the nice comments regarding my DH too