should I be on a Maintance programme? - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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should I be on a Maintance programme?



Diagnosed with non small cell lung cancer in June 2010, tumour in right lung, Intense treatment of Chemotherapy and radiotherapy which reduced tumour by 40 %, finished this in Oct 2010. Started on a trial of Stimuvax which finished early 2011 (START) After a bad infection and two weeks in hospital (Oct 2011) my right lung has collapsed, now just suffering from back pain and discomfort to the upper back area and spine some difficulty getting around.

The last scan I had was while I was in hospital. I see the Oncologist every three months and have an x ray which does not show anything with all the fluid and the collapse of the lung. this is the only maintance programme that i have so just wanted to know if anyone knows if this is normal. I have asked about another scan he thinks it would not achive anything but it would give peace of mind.

8 Replies

Hi Loweyalex

Peace of mind is a pretty good thing to have at times like this!!

I can only empathise with the first bit of your comment, having had inoperable NSCLC nearly thirteen years ago now

I too, had heavy duty chemo for about six months, which shrunk the tumour (not sure by how much). I then had a month of radiotherapy. I was lucky, and managed to keep clear of infections and my damaged luncg remained/remains operating - at reduced capacity.

Have a chat with your CNS about progress and how things are going, and don't forget Roy Castle and Macmillan.

Best wishes, Bill



I would speak to the Lung team. My understanding is that radiotherapy can 'kill' the cancer so If you have been 'stable' and disease free from the cancer you should not need maintenance. Even maintenance chemo can have detrimental effects on the body and there is only so much anyone can take. I am sure if they thought you needed it you would have it, they are still scanning you regularly so they will see if something returns and it will be caught early.

Hope that helps

regards, Lyn

Many thanks Bill and Lyn

best wishes Alex

Hi Alex,

I too was diagnosed with inoperable nsclc in oct 2007, I know where you are coming from requesting a scan, I would try and push a bit harder! I think if you have peace of mind you are able to be more positive. Lung cancer is like a waiting game, waiting for your next appt, your next scan and then waiting for results. I think its important that we as patients have a say in the treatment we receive. CT scans are more detailed than x rays. its a reasonable request from yourself.

Best wishes,


Thanks Michele, it definately is awaiting game. Due to see him early March so will have another go as the X Rays do not show anything as the lung is filled up.



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Glinda in reply to Hidden

Some of us who are non smokers also get Lung Cancer - so not inflicted - I can smell a cigarette a mile off - it doesn't seem fair that some smokers get off lightly whereas some of us get the illness of this by product. I can only think of passive smoking but don't think I should have paid the price of losing part of my lung because of some one else's necessary to smoke. I apologise if this offends.

I am a non smoker, yet I got Lung Cancer, I had a third of my right lung removed. I had no radiotherapy or any other treatment. Think this was because my cancer was located in one area and removing just the cancer would have left cells behind, so the whole lower right lung was removed. I am left with a 12 inch scar, on my bra line. I am on nerve pain medication because of nerve damage in that area. This operation was conducted up at Guys Hospital in London as the Cancer was located too close to one of my major blood vessels. I am now four years free of cancer since my operation on Friday 13th May 2011. Looking back and during my recovery, and all the morphine fast release and slow release, and all my other medication, I think I would have taken my chances!! I still sing in a Community Choir, it also helps with my breathing (it was during a Carol concert in December 2010 that I was having problems with the coughing etc - between the Jan and April 2011 I'd had every test, scan, breathing test, CT guided Biopsy, radiation dye test, body scan etc - within four months I'd had my diagnosis and date for the operation - I thank the NHS for their prompt investigation, their support and care. On coming home - I seem to have slipped through the net in my Primary Care Trust as my husband was my sole carer 24/7 and we got no help what so ever!! He had no respite care tor a break from looking after me - consequences of having lost his job prior to my operation and looking after me, then losing his Father suddenly put a strain on him and he got depression and is on medication - Cancer does not just affect you - the patient - it has a knock on effect to family members too including my children who were 16, 14 and 13. My 16 year old was also preparing for his GCSE's. It came at the wrong time - but when is the right time? Hence my thoughts on taking my chances and not letting it beat me. So in a nut shell Non Smokers also get Lung Cancer!!!

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