chemotherapy post surgery

[Jackie46]

I've recently had my surgery for stage 2 NSCLC. It was initially staged as 2B but has been restaged at 2A following the surgery. I was also on a clinical trial preoperatively which appears to have shrunk the tumour which may well account for the restaging. I am concerned as just been to local MDT and no adjuvant treatment recommended. I have read guidance after guidance which all seems to suggest to me that chemo is offered in most cases of stage 2 cancer post surgery. I am waiting to hear back from my trial oncologist (he would not have been at the MDT but I want his opinion) but really wanted to know if other people with stage 2 NSCLC had been offered chemo after their surgery. Thanks

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello Jackie46, it is good to hear the positive news that your surgery is over and that you have been re-staged as 2A, I can understand your concerns about not being offered adjuvant chemotherapy, you are doing the right thing by getting in touch with the trial oncologist and questioning this decision, it may also be of help to get back in contact with the medical team responsible for your care, you have unanswered questions about the about your treatment regime. If you know the reasons for their decisions made you may feel more confident.

If you wish to talk with someone please call our helpline Freephone 0333 323 7200 option 2

Kind regards Roy Castle Helpline

[Jaynair]

Hi Jackie, I had my op (upper left lobectomy) in Jan 2013. I was told that I would be having chemo after but it turned out I wasn't well enough within the set time span. I was a bit worried about it initially but then thought about the fact that after the surgery they told me that they had removed it all and, that was considered to be the 'gold' treatment, the chemo would have been a 'just in case' thing and might not be needed at all. Perhaps it's the same in your case? x

[Jackie46 in reply to Jaynair]

i suppose the difference is that I am very well. I'm only 46 / never smoked / back to getting over 3 litre on my spiroball 3 weeks post op! I think the issue for me at the moment is that the options have not been discussed with me. A decision has been made in the local MDT without anyone discussing pros and cons etc with me. I'm going to see what my trial consultant in Leeds says as all along he has told me I would be offered postop chemo locally. I've done a lot of reading and research and does not appear to fit with NICE or SIGN guidance for stage 2 NSCLC management. I'll wait and see what he says. Thanks for getting back and best of luck x

[Jaynair in reply to Jackie46]

Yes, I can understand you being concerned or frustrated that it hasn't been discussed with you. I would be feeling the same in your position. I hope that your visit to the trial consultant gets you some answers and clarification of what is going on. It's great to hear that you're doing so well, long may it continue x

[Janey_H]

Hi there

I had surgery last June (2015) having been diagnosed with stage 3b NSCLC. I had an upper right lobectomy. I had previously had four rounds of chemo and thirty sessions of radiotherapy. I had no adjuvant chemo.

I questioned my oncologist about this as, like you, had read that most people with more advanced cancer have adjuvant. My scan after surgery had been clear and his response was along the lines of : what chemo drugs would I give you, what dose should I give, how long should we continue it, how would I measure if it is doing any good as nothing to measure shrinkage in etc. I had had chemo in the Sept 2014 and had had no progression from that point to surgery so his thought was that that would effectively have done some of the mop up. I could understand some of the logic behind this (as often people have surgery before chemo).

I did mutter about it for a couple of appointments but then thought 'he has got me this far so I will trust his decision' (I had been told I was inoperable so getting surgery for stage 3b was brilliant).

I am now a year since surgery and my last scans three weeks ago were still all clear. I have now been moved onto six monthly scans rather than three monthly. I guess if it recurs I will never know if the adjuvant would have made a difference - but at the moment I have a treatment in hand potentially that hasn't been used and hopefully won't ever need!

Hope this has helped and you are doing the right thing by questioning them. Hope all goes well. Good luck!

Best wishes

Janey x

[Jackie46 in reply to Janey_H]

thanks. I trust the trial consultant in Leeds as he is a national expert on lung cancer so will await his advice. Feel disappointed that local MDT do not seem to have considered it let alone involved me in the decision which I think is poor. I think 3 weeks postop emotions all over place which is not helping! Thanks for response and fantastic to hear how well you are doing x

[hedgehoggy]

Hi Jacky46

I had stage 3 lung cancer in one love and was operated and removed. I also had chemo afterwards but I was told it was just as a preventive measure. I thought it odd as there was no cancer there after the op but thought the ONC Rtf. must know what they are doing.

Let us know what is decided and by the way I am In very good health. My op was in 2012.

Best wishes

Hoggy

[Jackie46 in reply to hedgehoggy]

Many thanks. I am a bit clearer now as to why chemo not offered as tumour was under 4cm. However thought to be a lot larger than this prior to having trial drug. It's confused things a little so now hoping the local mdt liase with trial consultant about whether I need it or not. Worrying thing for me is that the local mdt made the decision not realising I had been on the trial before surgery. I'll let you know what they say. Really positive to hear people doing well 4 years down the line. Many thanks x

[hedgehoggy in reply to Jackie46]

Sorry one love should read one love and rtf should be etc. Sorry for the previous spelling.

[hedgehoggy in reply to hedgehoggy]

My phone is in love I said LOBE .

[debkal]

My dad has been diagnosed with lung cancer he has an 8.8cm tumour, he has recently been really tired would this be the cancer

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to debkal]

Hello debkal, welcome to our forum. Sorry to hear of your dads diagnosis, fatigue and tiredness can indeed be due to lung cancer or any treatment regimes which he is currently undergoing. I have found a very good article on the cancer research site which might help explain and give you some advice on how to deal with fatigue cancerresearchuk.org/about-...

If you wish to talk with someone please call our helpline freephone 0333 323 7200.

Best wishes Roy Castle Helpline