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

(84 Posts)
stargirl04 Mon 18-Jan-16 17:19:04

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.

lessthanBeau Mon 18-Jan-16 17:34:19

You have the choice in this, not the doctors, sometimes we all feel like we have to do what they say, if you're happy not having surgery,cancer or not, thats your choice not theirs!
I had to put my foot down several times with the doctors over what treatment they were giving my brother, they don't always know what's best for you. Ask someone to go with you who knows what your priorities are and can back you up with doctors. My DB couldn't face struggling against them and asked me to go to all appointments so I could ask the questions and support his choices, sometimes they try to railroad you and you need someone there to say hang on a minute we discussed such and such at home are you sure this is what you want to happen? Good luck x

HicDraconis Mon 18-Jan-16 17:41:54

Very gently - because you're obviously terrified and understandably so - YABU.

You have abnormal tissue in your lungs which is growing and bleeding. It may not be cancer but whatever it is, without treatment, will be damaging your lung tissue. This can cause serious problems for you both now while it's there, and in the future if it isn't sorted out.

Doctors and thoracic surgeons recommend procedures based on the information they have and their experience to suggest what they think will give you the best overall outcome. We don't suggest invasive, major surgical procedures because we think they'll be fun to do or because "I have hammer therefore your problem is nail" thinking. Honestly.

But you're allowed to be as unreasonable as you like because I'm sure you are completely floored by this. Can you ask for a second opinion to help reassure you that whatever is suggested is needed?

stargirl04 Mon 18-Jan-16 17:45:08

I am floored by this HicDraconis. I've just started my shift at work and am fighting back tears. I know that makes me sound selfish and self indulgent.

BombadierFritz Mon 18-Jan-16 17:51:47

Of course it does not make you sound selfish! I know I would be terribly upset. You are entitled to feel however you are feeling about this.
I agree about taking someone with you to ask more questions and answer 'what ifs'
All these choices are yours to make. There is also the choice of doing nothing. Noone can make you do anything you dont want to. Is there a dedicated nurse you could speak to? I'm sure people have questions all the time after appointments like this.

stargirl04 Mon 18-Jan-16 18:07:56

Yes, bombadier, I have the number of a nurse who was present at the consultation.

I went through this same scenario 12 years ago in Australia. Doctors in Sydney, where I lived then, wanted to resect my lung to achieve a diagnosis. A doctor friend in Melbourne spoke to consultants in her hospital who advised "No, don't have the operation".

I said No and chose to be put under observation instead with regular scans. It wasn't cancer because if it was I'd be dead by now. The doctor this time himself said that the tissue was not behaving like a malignancy.

I can't believe they're considering such a huge operation when they "don't think" it's cancer. I guess I am in denial about this and resistant to it.

Secondtimeround75 Mon 18-Jan-16 18:14:39

If you have the surgery does it stop whatever it is spreading?

For a comparison ,women with the BRCA gene chose to have a mastectomy to remove the risk of getting cancer.

Is it more risky to not have the surgery?

AnchorDownDeepBreath Mon 18-Jan-16 18:20:46

I can't believe they're considering such a huge operation when they "don't think" it's cancer. I guess I am in denial about this and resistant to it.

The problem is, it is something. It might not be cancer, but it's growing inside your lung and bleeding, and that's doing your lung no good at all. They can either wait, and hope that if it's dangerous, they act before it's too dangerous, or they do preventative surgery to both try to diagnose and to remove the risk.

This must be very scary, though, and I don't blame you for not wanting to go through with it. Would it help to talk through the consequences of the operation, and what you could expect afterwards?

stargirl04 Mon 18-Jan-16 18:22:18

Good point secondtimeround.

The doctors said that if I leave it unchecked "it" could spread into my other lung and cause a worse problem, but they don't yet know what "it" is. One of the possibilities they're considering is that it might be some rare infection or some type of pneumonia.

I don't know the extent of the risk of not having the surgery. I think I will have to get a second opinion and talk to people who know about such things.

I suppose the reason why I'm so resistant is because when I went through this 12 years ago, I took a risk then not to have the surgery and I've been fine. I still feel fine.

However, to be fair, they did say to me 12 years ago in Australia that it was okay not to have the surgery, if I could live with a bit of uncertainty. They said to me then: "As long as it doesn't get bigger you've got no worries."

It didn't, but this is a new growth and it has got bigger sad

I am in major denial, aren't I?

Thanks to those who've responded.

MiniCooperLover Mon 18-Jan-16 18:22:38

My mother had most of one lung removed (because of lung cancer admittedly), but the side effect is she's been told she can no longer fly (because of air pressure risks and having just one lung), so I'd want to know all the long term side effects for you before going ahead.

stargirl04 Mon 18-Jan-16 18:26:06

Hi anchor. I agree that something is going on but it may be curable with antibiotics. This is my fear - that they take half my lung out and it could have been cured with drugs.

But I really do feel great! I've been going to the gym and doing loads of exercise with no ill effects.

I had pneumonia a year ago and that really hurt! I was treated with antibiotics and it went away eventually (I think), but this new abnormal development appeared in my lung literally right after the pneumonia.

stargirl04 Mon 18-Jan-16 18:27:39

Minicooper - thanks for this. Not being able to fly would weigh heavily on me and I would be inclined to say No to surgery if this is the case. If they find malignancy, of course I would have the surgery, however.

But thank you for this information.

stargirl04 Mon 18-Jan-16 18:30:01

Malignancy from the biopsy, that is, which will take place in the next week or two.

Titsalinabumsquash Mon 18-Jan-16 18:35:23

All I can advise is to ask questions, write them down so you don't forget and ask them, even if you think they're silly or trivial, write notes as they give you the info, then ask to go away and think about it.

My son has a respiratory condition and the consultants have been discussing a lobectomy, I heard the words lung and surgery and just panicked, but now having gone away and wrote my long list of questions I feel more able to make an informed decisions and to have a calm conversation about it.

CoperCabana Mon 18-Jan-16 18:36:58

I have one good lung. My other lung was found to be barely functioning and most of it was removed due to infection. I have been told of no such risk flying!? Definitely check as to whether or not this is a risk.

So sorry to hear you are going through this. How very frightening for you. A second opinion sounds like a good idea.

stargirl04 Mon 18-Jan-16 18:44:59

titsalinabumsquash - great name! How old is your son? You must be both frightened. I am! Is your son's condition life threatening? I am asthmatic and have been for 40 years but it is well managed.

CoperCabana - thanks, this is helpful. Do you mind if I PM you?

Titsalinabumsquash Mon 18-Jan-16 18:58:54

He is 11 and he has cystic fibrosis with bad bronchiectasis on the right upper and middle lobe, his lungs are functioning at around 60% the consultants at the Royal Brompton and Harefield are debating amongst themselves on wether it's too much tissue to remove safely or not, it is really scary but with cf he's likely to be facing a double lung transplant one day anyway so I guess I had best get used to it!

stargirl04 Mon 18-Jan-16 19:00:38

Gosh, I'm really sorry to hear that titsalinabumsquash. Your poor son. Are you going to get a second opinion?

Titsalinabumsquash Mon 18-Jan-16 19:05:43

We're going up with our local consultant to all sit and decide what's the best plan of action. smile

MyCatIsTryingToKillMe Mon 18-Jan-16 19:06:31

Mini Cooper my DM also had most of one lung removed but due to TB rather than cancer over 60 years ago. Her remaining lung is badly damaged and she has a diagnosis of COPD and also asthma more recently. She is still able to fly though. She needs to have O2 available on the flight which she pays for but actually has never needed.

Mum has lived a very full life despite her rather brutal surgery from the 1950s and has only got more limited in her mobility in the past 10yrs (she'll be 80 soon). It's true she may not have been able to climb mountains or run races and she has been prone to chest infections but that's due more to the damage of the remaining lung rather than anything else.

My point I guess OP is that yes it is a terrifying thought but it certainly is something you can live with successfully. Get a second opinion to reassure you but if the growths in your lung are going to cause long term problems for you then it might be the better of the choices. Good luck in whatever you choose to do and please do remember, you DO have a choice. flowers

MyCatIsTryingToKillMe Mon 18-Jan-16 19:08:32

DM is also under the Brompton and I have nothing but praise for her treatment there.

MiniCooperLover Mon 18-Jan-16 19:16:54

stargirl104, clearly the advice my mum was given was very different to advice others have had, so definitely don't worry too much about my post. Sounds like others are more on the ball than me smile For whatever reason she was told that, it was obviously personal to her health. So don't panic x

stargirl04 Mon 18-Jan-16 19:20:37

Mycatistryingtokillme - thank you so much for posting this. It's given me hope.

stargirl04 Mon 18-Jan-16 19:26:34

I'd better get on with some work now folks, my colleague has done twice as much as me so I'd better get a move on, but thanks so much for talking to me here.

I'll be back when my shift's finished. Thank you all.

MyCatIsTryingToKillMe Mon 18-Jan-16 19:28:35

I'm glad Stargirl, it's very easy to be scared in your position but hopefully it's useful to hear about other people's experiences about managing their condition. She did an awful lot of things she was told not to do (like have children!) and has lived a lot longer than I suspect the original doctors thought she would!

One thing I would say is that she can't have an operation under general anaesthetic but I'm not sure if that's a more recent thing? However she has had operations done under epidural and sedation.

Ask lots of questions and never feel silly for doing so.

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