Change of surgeon - updated

Yes I can see why this would be more than unsettling. Something similar happened to me, I was under the strong impression that A would do my surgery but on the morning of the op, B walked and announced they were doing my op. I was stunned, too stunned actually to even say anything. It was explained to.me later that there is no guarantee on the nhs that a particular surgeon will do an op, rather that someone from the team will. What I can't tell from what you’ve written is whether this new surgeon is part of the same surgical team as the first? If he is, then it might have been approved within the team. Can you make contact with the first surgeon via his secretary to check it out?  Reassurance is what you need right now. All made worse of course by it being the Easter weekend, so you are stuck with this till Tuesday.

Thanks for your reply.  
UCHL takes lung cancer patients from a number of different hospitals.  The thoracic department has 5 consultants surgeons, the new one is a locUM

The old one was a full member of the MDT (with oncologist, respiratory consultant, my MacMillan nurse and other specialists) at my local hospital, where he does a clinic and where I was assessed by him.

i think there is a difference between smaller, more common surgeries and major surgeries in terms of who does the surgery.  All the way along, it was said that the first one is who would be my surgeon - he himself said that.

The fact that my specialist nurse doesn’t know the second one at all says a lot.  She has been a member of the MDT for several years.  She thought it was possible that first one could be on A/L, but was surprised the new one would be doing it.

In that case I would definitely contact the first surgeon's secretary asap for clarification. You can explain that you are confused/puzzled because you were given a clear indication that he would be doing the surgery.  Good luck!

The more time goes by and the more I think about this change, the more anxious and concerned I am and getting very upset and panicky about it all.

the anaesthetist I saw that day told me I have a higher risk profile than usual because of my co-morbidities.  Also the plan for robotic surgery had to be changed to VATS because of some vascular issues I have.  So I’m not straightforward from that point of view either.

i did phone the help line yesterday morning because i was getting in such a state.  I spoke to a lovely and kind nurse specialist.  She also thought my concerns about a new, unknown surgeon taking over were justified, which was validating.

 It’s so easy to start doubting yourself and thinking maybe you’re making a fuss over nothing (even when you know you’re not).  It’s also about not wanting to be seen as ‘the awkward and annoying patient’.  It may be that complaining /questioning is not supposed to affect your care, but you can’t legislate for people’s feelings.

over the years I’ve had a number of bad experiences with medical treatments and care and the memories have been flooding back - things I haven’t thought about for years, but were pretty traumatic at the time.

The McMillan nurse suggested I find out when the original surgeon is back from leave and maybe delay the surgery (again) til then.   She agreed  that it was surprising that my lung cancer nurse who has been part of the MDT for a number of years didn’t know of him.  

So I will do that on Tuesday. Also I emailed my nurse with my increasing and additional concerns at the end of Thursday (not realising the next day was a BH), so I will hope to discuss it with her some more.   Things always happen late Friday afternoons or just before bank hols.

i did wonder about deleting this message, rather than posting it…..but I’m going to press the reply button

I'm glad you posted. You have a long weekend ahead of you and I think its important to get as on top of it as you can. You're getting some good practical advice too, which will hopefully lead to a better outcome. None of us want to be thought of as a nuisance patient, but if that is the consequence of being proactive and not taking things on face value, then so be it. In any case, I don't think you're being unreasonable at all and hope you get your original surgeon back on board. 

Thanks, Lenzi. I appreciate that.

Sometimes you just get so tired that everything has to be battled for….

i’ve been writing some of my thoughts down this evening to help get some clarity in my mind….and I’ve just realised that I’m not sure I would feel safe to go ahead with this other surgeon.

I know nobody wants to have lung surgery, but once I had understood why they were recommending it,  I didn’t consider not doing it….. as things are now, I question the wisdom of going ahead with it

All the more reason to get this sorted. Once you have gathered your thoughts and put them on paper, you have probably done everything you can till next week. I know its easier said than done but I hope you can find something to distract yourself, which is often the most we can do when stressing about cancer stuff.

I was in your position two and a half year's ago, although it wasn't a change of surgeon, it was about the treatment for my lung cancer. 

I was diagnosed with stage1 left upper lobe lung cancer in 2023, after all the usual investigations I was only offered the surgical option, nothing else.  I am a 76 female, I live alone, although I have family living nearby, and I am very independent, very fit, I do all my own DIY, go on long hikes and I am always on the go.  I did not want to have such invasive surgery and all the risks and complications which are involved, and, which in effect, could possibly leave me an invalid for six months or so.  Also, more importantly, I had my 'inner voice' telling me 'no'. So I began researching other options and decided on radiotherapy alone.  

At my next consultation with the Oncologist to discuss the surgery, I told him I wished to decline surgery and opt for radiotherapy instead.  He became quite agitated to the point of almost anger, but I was determined to go with my gut.  Therefore he reluctantly referred me for radiotherapy.

My radiotherapy (SABR) just involved eight sessions spread over a two and a half week period.  Each session lasted about 10 minutes and I was able to get on with the rest of my day.  Side effects where minimal, just tiredness and a slight loss of appetite.  My first CT scan after treatment ended showed a 50% reduction in size.

Now, the results from my last CT scan on 20 March, which was the 4th, the consultant said it is now "almost gone".  He also told me that what can now be seen on the CT scan are probably dead cells.

Sorry for long reply, but, whatever you choose regarding treatment, I wish you all the very best.

Ann 

Thanks so much for your reply Ann and extremely interesting to hear about your brave decision-making and outcome.

I also had LUL stage 1 and had SABR RT for it before Christmas, though I don’t know the results of CT yet.

I‘Ve been told previously that the tumour in my right lung is too deep for RT and when I discussed watchful waiting they explained why that wouldn’t be appropriate.  Otherwise, I think I might well opt for RT.

i know that I wouldn’t have gone ahead with my 2 spinal surgeries if the surgeon was changed like this

I.Just need to get through today and tomorrow and then try and get some more clarification

What a whirlwind of a palaver!

Monday, I received an email from the thoracic nurse specialist with details about my admission, which said let us know if you have any queries.  So I outlined my position and asked whether surgeon 1 was on annual leave and about the possibility of delaying til his return.  She said she would discuss my concerns and get back to me.

10 pm I got a very unacceptable email from surgeon 1.  It Stated he had told me at my first meeting  that surgeons pooled patients (a management endorsed initiative)!.  He unequivocally did not say this - my sister was there and taking notes.

He also said that he would ask surgeon 2 to to provide me with an extra consultation, but,     ‘ “Please bear in mind, he would have to facilitate this above his busy commitments and would be an exception”

Conscious patients are such a bloody nuisance!  Needless to say I did not sleep well last night…

This morning started with a call from my lovely MacMillan nurse, who I’d been keeping updated by email, including forwarding her my late night email.

Having someone listen to you and take what you say seriously makes such a difference.  We discussed my options, such as they are.  By the end of the call I said I would proceed with surgeon 2, even though I wasn’t happy about it, and would hopefully get a video call with him.

Half an hour later I got an email from the pathway coordinator offering me an admission 2 days later with Surgeon no. 1!!