Thank you so much to every one who responded to an earlier post, the feedback was really encouraging for me.
I'm in somewhat of a dilemma, it would seem that it is to be my decision as to whether I have Chemo with Radio therapy or Chemo followed by a Lobectomy of the left lung. The problem is no one can give me any actual facts upon which to make an informed decision. I hear words like 'should be better' and 'improved chance' for Surgery (with neo adjuvant chemo), but no figures or results to compare one against the other. I've researched on-line, and find very inconclusive evidence either way. I have asked consultants directly, but there is a reluctance to commit or talk 'straight' on the matter. I have tested OK & proven fit for surgery, and feel that's the choice they would like me to take, especially as there has been so little discussion about radiotherapy so far.
Can anyone shed any light, know a good resource or have you been in this situation yourself maybe ? For me the priority will be remaining as active as I can, and I'm from what I can see, surgery doesn't offer any guarantees other than being invasive and offering long term discomfort, with a (debatably) tiny improved chance of being cancer free.
Apologies for being negative - I'm just frustrated at the moment.
My husband never got the chance to use the new immunotherapy drugs. It's having good effects on people. I would demand it. The radiation was bearable but the chemotherapy almost killed him.
Opdivo is the name of the new immunotherapy drug. Good luck!
There is an American website called Inspire. It has people who post on there from all over the world. It maybe worth posting on there to see what response you get. There are also referrals to research there. There is also an American organisation called Grace which has lots of patient information on lung cancer, it is run by medical staff. It has a website too.
Sorry to hear of your situation and treatment pathway dilemma. One other way of thinking about things is to consider what the preferred 'sequence' of treatment might be. From what I understand about lung cancer (wife stage 4 NSLC adenocarcinoma) having treatment options to move to if something doesn't work is a good position to be in. Chemo and radiotherapy can be debilitating physically, physiologically and sometimes (my wife needed brain radiotherapy for metatastic spread) psycologically. As I see it, you wouldn't have surgery when weakened in this way so it's something you do first in that sequence and not second.
What you don't say in your post is if you have had a biopsy of your cancer tested for molecular mutations. If you have one of these mutations then more treatment options, pathways and sequences open up for you including targeted drug therapy (TKI treatment) as well as immunotherapy options. Some of these are non invasive and much less debilitating although it's important to remember that each patient is different as is their response to the treatment. My wife was found to have an ALK mutation so chemotherapy was cancelled and instead she takes a targeted drug to which she has had an excellent response.
My best suggestion is find out what your full range of options are first and then plan an optimal sequence. But the final decision will be yours. Best of luck with whichever treatment route you go for.
Hi there, I probably wont be much help to you, however I had my whole right lung removed in 2012. Still going strong. Can be out of breath on very cold or windy days. I dont get any pain.
I had chemo after surgery (adjuvant) but only for 1 session.
Sorry to hear about your dilemma in your decision whether to have surgery or not.
Do you have a lung cancer specialist nurse that you could discuss your concerns with , if not you can request one from your specialist.
You could also discuss this decision making with your GP , which may give your some reassurance to have peace with whatever you decide.
Sometimes surgery is the first option for certain lung cancer types followed by either Radiotherapy or Chemotherapy. Immunotherapy, which is dependent on the cancer cell being a particular cell mutation is usually second or third line treatment.
You can view the clinical management of lung cancer from the NICE guidelines (National Institute for Health and Care Excellence) on nice.org.uk or if you are in Scotland , SIGN (the Scottish Intercollegiate Guidelines Network, sign.ac.uk
These guidelines are all research evidence based, another useful site to perhaps look at is the cancer research UK - cancerresearchuk.org
There is lots of useful information on surgery, radiotherapy and chemotherapy on our website roycastle.org
We have a free nurse led telephone helpline if you wish to discuss anything on 0333 323 7200
I think if consultants won't give you a straight answer, it's probably because there are pros and cons for the different treatments - no one treatment is standing out as the obvious first choice. If it was me, I'd want to talk to a professional with the time to help me list all the pros and cons - such as a specialist lung cancer nurse. It is really really hard to have to decide, and no one can do it for you, but there are people who can help.
I also think - forgive me for saying this - but talk about 'remaining active' is a bit irrelevant at this point. You can be active after ANY treatment if you're determined and patient and positive - maybe as active as you were before and maybe not, but as active as you can be. That's up to you, and it sounds as though you have a great attitude. But the point just now is to tackle your cancer - by whatever treatment is best for that. But with regard to surgery - it did work for me, and I had very little discomfort after the first few days. I was reasonably fit, and I know you are too. Whatever you decide, I wish you the very best of luck.
Hello, you are correct about relevancy and I am glad to say I have gained some perspective in the last few days. In fact I've spoken to the cancer team and have arranged to speak to the surgeon soon, who can answer my queries. I'm comfortable with the path at the moment; ie; neo-adjuvant chemo to shrink/stabilise and then the lobectomy - and understand the reasoning behind this choice. Thank you again for your response and grateful for the feedback. All the best.
Thanks again everyone for all the support and advice. With your help and some additional conversations I've managed to come to a conclusion at this point as what the optimal path is for me. Who ever thought there were so many variations and parameters and choices to make, but I am feeling a lot more comfortable now - so many, many thanks, and all the best.
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xx
Radiotherapy Roulette Update
No chemo due to covid
No more chemo
another update on chemo
