Advice please

[pjlady]

Hi everyone, my husband is to have 2 more cycles of chemo, then is being considered for surgery to remove his left lung as he has NSCLC stage 3a, can anyone give us any insight as to what to expect after surgery both in the short and long term. We would like to think that this would be a cure, but are scared to be that optimistic, if anyone has had this surgery, would they please give us some information. My husband is 62 and in general good health at the moment, considering the circumstances...

[stewart58]

Hi Pjlady,

I had my right lung removed 14 months ago aged 59.Like your husband I was healthy before lung cancer.So far the cancer has not returned and I hope that it stays that way.Life will never be the same as before the operation but I am glad that I had the surgery as I am sure that it was the best option.I just try and eat well and do some exercise to try and stay healthy and give myself the best chance of survival.

I was given lots of advice for after the operation in hospital,and the Roy Castle booklet Surgery for lung cancer is very good for information,it is well worth a read

[pjlady in reply to stewart58]

Hello stewart58,

Thank you for getting back to me, and for your positive response, I'm pleased that you are doing well, and long may it continue. I certainly will get hold of a copy of the booklet that you recommended, thank you.

This is a very difficult journey that we are on, as yourself and others on this site know only too well, It is always good to hear when someone is doing well, and having been a member of this site for over two years now, I have seen how helpful and supportive people can be...hopefully others will be able to contribute also.

Kind thoughts to you, pjlady

[TrishLamb]

My hubby had his full left lung removed in February after being diagnosed with T3N1M0 ademacarsinoma. Then he had chemo, but they didn't know it had spread to the pericardium and the lymph node or he would have had chemo first. He then had 4 cycles of chemo. We had to have hand rails and perching stools, which helped so much. He has good days and bad days, he enjoys spending time doing the gardening but isn't able to do the heavy things he did before. Some days he gets out of breath just talking on the phone, everyday is different. Made me realise how fagil my big strong man is, everyday is precious.

[pjlady in reply to TrishLamb]

Hello TriciaPen,

Thank you for your response and information, as difficult as this is for you all, I hope that you and your family find your way safely through this awful maze, and wish you all the best for the future. We have been on this journey since April 2012, we had only been married 6 months and we were told that my husband had inoperable stage 4 nsclc ( with spread to the liver and adrenals ) when we stopped spinning from the news, he started chemo and had 4 cycles and then 5 days radiotherapy, which thankfully put the cancer into a quiet phase, but we were told it would activate again within 12 months...since September 2012 we have lived as best as we could, attending all hospital appointments etc, waiting for this thing to rear it's head again, the 12 mths passed and we almost, but not quite pretended that it had gone away, then in March this year at an outpatients appointment, I questioned if they had staged his cancer correctly, as he was still so well, fortunately, the doctor agreed to do a PET scan and an MRI scan, which had never been offered before, when the results came back, we were told that there was nothing in his liver and his adrenal glands looked fine!!, when we got over the shock of this news we were offered a very cautious apology (we are sorry for what I can only say has been a shambles) quote, unquote!! and immediately referred to a surgeon with regard to removing the lung, in 5 minutes my husband diagnosis went from stage 4 inoperable to stage 3a operable...! We were elated, but it didn't last long, surgeon said surgery was too risky as the tumour in his lung was laying against his aorta and he could not see a division, we were sent back to the outpatients department, at this stage we felt like we were on an emotional roller coaster... Anyway, the long and the short of it is the tumour has started to enlarge again, although still not showing up anywhere else, my husband is now about to start cycle 3 of chemo tomorrow, then another one after that, and we have been told today that then they are willing to try to remove his left lung if the tumour shrinks away from the aorta enough, it's all very scary for us both, and I'm sure you know our fears, so again thank you for your input and my very best thoughts and wishes to you and your family. pjlady

[elja]

Hi! My experiences was much more straightforward than your husband's but I hope you might find something useful in the following ramblings .... I was diagnosed with lung cancer in March 2011: a T3N0M0 (2b) and deemed suitable for surgery. I had my lower left lobe removed in May 2011. However, during surgery, something suspect in the upper lobe was sampled and sent to the lab. This turned out to be a different type of cancer and was a 1b - and I had the rest of my left lung removed in Aug 2011. I had no chemo or radiotherapy at any time. I felt pretty unwell for a long time after the second operation but have a very supportive GP practice which helped immensely. I found there is very little information about the long term effects of this surgery (and I found there was a massive difference between the lobectomy and the pneumonectomy in that respect) so I'll tell you how I've managed (though everyone is, of course, different).

After about a year, I reached the stage that I'm still at now. I still have a persistent dry, tickly cough and have given up buying tickets to performances of any type other than loud rock concerts. I've not gone on any overnight trips away from home as the thought of managing luggage is too daunting (though I may do it sometime). In any case, walking isn't really a pleasure so wandering around, sightseeing, (my ideal holiday) isn't as attractive any more. (However, I have made a day trip by train from Edinburgh to York several times, on my own, to meet up with a friend there).

That's the negative ... on the other hand, I live alone and have had no help of any kind (my choice). I came come from hospital alone by taxi (I live in a city, so the hospital is only 3 or 4 miles away). I manage my housework and look after my large patio garden by myself, though it takes longer than it used to. Moving heavy furniture or patio containers is hard - but I can do it. I've done my grocery shopping online for years so that's no problem. I have a busy social life and go out to meet various different friends in pubs about 4 times a week. (I don't drive but am lucky enough to live in a city with a good bus service.) I still go to the gym weekly, to do resistance work - strong muscles, I'm told, need less oxygen than weak ones.

I find stairs and upward slopes daunting so avoid both as much as possible and take them slowly when I have to. I walk slowly on the level but take care to keep my head up in the hope that I look like someone having a casual stroll! If I have to stop to catch my breath, I use the opportunity to look around and notice things that I'd probably not have noticed before. (I felt very self-conscious doing this at first, but it doesn't bother me now.) I much prefer to walk on my own as I can go at my own pace.

Altogether, my life is more limited than before (and all the online stuff, including the NHS - that says you can breathe normally with one lung , bears no resemblance to my experience) but is still very enjoyable. I'm female, 5' 3", size 8-10, and will be 70 in 5 months' time. And so far, as far as anyone knows, I've had no return of the cancer.

Sorry this is so long - I hope I'm not just being self-indulgent by writing so much and that you've found some reassurance in it.

[pjlady in reply to elja]

Hi elja, thank you for responding to me, and for your clear description of your experiences since your surgery, I get the impression from your post that you are a strong minded person with a good sense of humour, even when faced with all you have been through, I see a lot of similarity to myself, I too faced cancer 6 years ago when I lived alone and somehow between the 2 weekly cycles of chemo for 6 months, managed to keep going, with just a little help from a few friends, it was scary but I got through it...

Now I need to put all my energy into helping and supporting my lovely husband, who is such a gentle, kind man, facing the biggest fight of his life, we just need and want to know all that is possibly ahead of us, both good and not so good...

It seems from your post that although you find life somewhat challenging, it is still a very productive life and that you have certainly benefited from having the surgery, and wonderful news that you have had no return of the cancer...Thank you so much for your input, and I wish you all the best for the future. pjlady.

[elja in reply to pjlady]

Thanks you for your very kind reply. I wish your husband and yourself all the best for the future and hope he's as lucky as I've been so far.

[wendiau in reply to elja]

grats to you xoxo

[wendiau]

Hiya pj ... had my left lung removed in 2010 .... (had hip replacement with femoral nerve damage 2012 so walking is crappy) and breathing a bit labored.... but apart from that ok ... the beast hasn't returned.... I slept in recliner for a few mths after surgery...Buy a wedge pillow to sleep on.. as well... I still use that to sleep on....I was a full time singer / entertainer but can't do it now.. ..but do a few gigs per mth... everything will take time.. as everyone is different.. main thing.. don't rush.

best of Luck

Wendy xo

[pjlady]

Hello Wendy,

Thanks for taking the time to give us some insight into your experience regarding your lung removal, we are very aware that if my husband has this operation, that life for him will have some limitations afterwards, but we thought we would like to hear from some people who have been through it, both the good and the bad to try to get a balanced opinion, it appears from the replies to my question, that overall it is a successful way forward... We have also had the subject of 'radical radiotherapy' raised as an alternative if surgery turns out not to be an option, both treatments are terrifying ideas to us, but from what we understand, surgery is the best option for complete removal of the 'beast' as you put it, so keeping our fingers crossed, in the meantime, my man is only a week into his 3rd cycle of chemo, with another one to have before he is scanned again, then see oncologist and hopefully be referred back to surgeon, so at least another 7/8 weeks before we know the next move,it's all ifs, buts and maybes at the moment!

The tip about sleeping and wedge pillow are great ideas, thanks, I can understand how that would help.

Best wishes to you for the future, keep singing

[wendiau in reply to pjlady]

Thank you.. and keep positive... hard to do.. I know.. but... soldier on xoxo