Lobectomy in absence of tissue diagnosis

Hi everyone. Never thought I'd be posting here but here I am. Really encouraged to see the support that goes on and that this space exists for sharing information/ experiences through this wonderful platform.

My story: I received a phone call from my respiratory consultant this week re: the results of a recent chest CT. I had two nodules (picked up incidentally) that they wanted to make sure didn't change over time. The larger one (2cm) has stayed the same which they are no longer concerned about (been unchanged over 2 years). However, the smaller one (10mm) has changed within a year. It has grown a couple more mm and has become more dense in the middle and fuzzy around the edges. Given its morphology and appearance my consultant is concerned that it could be something sinister. I asked how likely is it that it could be cancer and apparently the chances are more than 50%.

My case was discussed with other consultants and there are two schools of thought as to how next to proceed. One side thinks I should leave it and see if it stays the same in case it is a benign nodule that I suppose just happens to be mimicking something sinister. The other side thinks the complete opposite and that it needs to come out now. I was told the problem with leaving it for another few months is that if it turns out to be an early stage lesion the chances of it spreading increase the longer it stays. While, doing something now would potentially be curative because it would have been caught early. That said the only option I was advised to have if I went down the surgical route is a lobectomy which I'm told would cause 20% loss of lung function. Aside from the actual operation itself I am concerned about the potential complications as I heard it can cause AF in some and I am susceptible to arrhythmias. I asked why not just do a biopsy but told due its size, having a biopsy wouldn't give accurate results. Also, because of how it looks/ changed I have to have another PET scan for them to rule out that it's not a secondary from somewhere else as that would change the course of action entirely. That would be my second PET in 2 years (or third PET scan in 10 years - latter done for suspected lymphoma which turned out to be benign). 

I have to make a decision as to whether to have the surgery. The thought of having something with those odds of it being cancer (>50%) makes me feel its a no brainer. Just confused as to what circumstances a lobectomy would be offered over a biopsy in the absence of any prior tissue diagnosis of cancer. 

Has anyone had a mid lobe lobectomy and if so how has it affected you with normal activities? To what extent has it reduced your ability to exercise? Also, I was told a wedge resection wasn't an option for me. Does anyone know if that could be because it would be more riskier (in terms of post surgery complications) than removing the entire lobe? Finally, I know it is all necessary and I am grateful to have had investigations for my complaints but I guess I am a bit concerned about the cumulative effect of all the radiation I would be exposed to (i.e. 2 PETs and 3 CTs in 2 years) in the absence of any definite diagnosis. 

Sorry for the length. I would appreciate any thoughts you may have. Thanks 

  • I had a needle biopsy prior to the operation that I had last Monday. I’ve been told that only 15% of lung cancer sufferers are offered a lobectomy so I see myself as one of the lucky ones. I currently have arrhythmia now but they tell me it should settle as I get back to a more normal life. I’ve never had arrhythmia to my knowledge so I was surprised to say the least. I may need some mop up chemo later but currently just have to be patient.

    Well, that’s my story. I don’t know if it helps but they may believe it’s preferable to remove the tumour now as they may not be able to do so later.

    Good luck x

  • I agree with Daisychain,

    I would love to be told I could have surgery.

    I understand  your concerns though, as it's such a big decision to make.

    X

  • Thankyou Daisychain. I really do appreciate you taking the time to read and reply. It has certainly helped. I’m sorry to hear you have arrhythmias but glad that it is likely to settle in time.

    I hope I didn’t come across as being ungrateful for the offer of a lobectomy. I suppose it’s because nothing has actually been diagnosed (histologically) and its still in the grey area zone – where some think I should wait because there’s a small chance it is benign, while others think otherwise. I guess I’m also a bit twitchy because I experienced a life-threatening complication to a common medical complaint exactly a year ago and ended up in hospital for 3 weeks – and have only just recovered. Still, its clear to me that I am in a very fortunate position (if it turns out to be malignant which the odds suggest) and should realise that it wouldn’t be offered unless it was totally necessary.

    Wishing you all the best with your recovery and hope the surgery is curative.

    X

  • Thank you Harebelle. As I said with Daisychain (do see my reply) I really do appreciate your feedback. I’ve taken this and comments from family on board and acknowledge that (regardless of the diagnosis) I am fortunate to be in this position as it could be much worse.

    Many thanks and keep well. X