In Limbo!

[pjrager]

Hello to All, I am in my 8th week post Right Lung lobectomy. I am scheduled for a resection on Left Lung end of August. I've been told 2nd surgery won't be as bad as 1st. I'm still on pain meds at night and I'd like to know if anyone has had the same type of surgeries.

Still not sure of what I have to look forward to; if I will need chemo and radiation, etc.

Of course, I know I will just have to wait for the 2nd surgery and wait to find out if it is an independent tumor or related. I've been told if it's related, it will be stage 4. Other than that, I'm in the dark.

It's amazing, everyone tells me I look great and you know, I feel pretty good even after losing a lobe. I just would like to know what's in store for me, etc.

Thanks for your generosity. Patricia, Rockville, MD

[RandyW]

Welcome and sorry you have to be here. You might not get a lot of response til Monday as it is the weekend right now. I could be wrong but you will get a ton of support from everyone here. I can not help with too much about Surgery as we never had that done so..

If you get time and need some inspiration take a look in the good news and the inspiration forums today..they can help you out !

[Bruce u]

Hi Patricia

I had my upper left lobe removed in Sept. 2007. They were just going to do a resection but in the OR, the surgeon changed his mind and removed the entire upper lobe. I had 4 rounds of adjuvant chemo after surgery. I was staged at 1B and they did not recommend chemo. I argued that I did want it and they finally agreed. But they wrote on my chart that it wasn't recommended and studies did not support my decision. I would certainly recommend it if you have a choice.

I am not sure if you will have radiation if they do a resection and remove everything.

I do almost as much now as I did prior to surgery. I do not play sports now but that is more to do with COPD than the lobectomy. Take care.

[eric byrne]

Hi Patricia,

Welcome to LCSC,pleased to meet you,although sorry that you have received a LC dx of course.This site has been a wonderful find for me over three years ago,wishing that I had found it earlier.

I was dxd in 2008 with NSCLC,was successfully treated with neo-adjuvant chemo,vinolbine and cisplatin,it was hoped that this chemo would shrink my tumour to a managable size to allow me surgery,well fortunately this worked and in January 2009 I had a upper right lobectomy,there was spread to a local lymph node which was also removed.

I have to say despite all my forebodings of the treatments that lay ahead,I sailed through the lot,OK I did have one occassion of constipation caused by the chemo,which I could have avoided if I had paid more attention to my fluid intake.The surgery I worried about

being extremely painful and leaving me a breathless invalid was not realised.OK it was a wee bit uncomfortable,but painful is a bit of an exaggeration.

Today nearly four years after my dx,I am feeling great,I do get a bit out of breathe climbing Scottish mountains,but honestly I think I had that problem before my dx.

You know lung cancer may have rained on my parade,but it sure came with a great big silver lining,I have never had so much fun in my life since I became a lung cancer advocate eg tomorrow theres a film director coming to film me at home for a TV prog aimed at teenagers to give up smoking or not to start,last Friday I was in the ICU in Glasgows Victoria Infirmary on a photo shoot for a new lung cancer magazine.Incidentally the girl photographer was also called Victoria,and on the following Monday if was interviewed by a researcher from Channel 4 about a cancer prog to be screened in October,guess what her name was?yes Victoria.

My best wishes for you as your treatments continue,may they be successful in removing all these cancer cells from your body,looking forward to getting to know you,incidentally,why not visit our Just for Fun forum,to exchange stories of the lighter side of your life.Theres also the members photo album to explore,lots of my pics of Scotland to see and my trips around the US of A too.

[Joppette]

Hi Patricia,

In 2007 my left upper lobe was removed and I had adjunct chemotherapy without radiation because there was no evidence that cancer was in the lymph nodes or elsewhere.

In 2012 my right upper lobe was removed because they found a NEW cancer and I had adjunct chemotherapy again without radiation because there was no evidence that cancer was in the lymph nodes or elsewhere.

Both were considered two separate cancers and both were staged at IIB. If the cancer in 2012 had been from the original one, it would have been Stage IV because it would have been a metastasis from the original tumor.

I think that is what they are waiting for. If the cancer in the other side is a different cancer from the first side, it would not be considered a metastasis, and be staged at a lower stage.

Whether it's a lobectomy or a resection, I think (just my opinion) the recuperation is about the same. Each of us is different, so it's hard to say if your recovery would be different, better or not!

As for chemotherapy, I'm with Bruce! I'm glad I had it, though it was not pleasant. Knowing that they did all they could to erase the cancer was good for me.

They will not do radiation unless they find evidence of cancer outside of the lobes, either in the lymph nodes or in another part of your body.

As for pain? Again, everyone is different. I had my 2nd lobectomy in January of this year, and I am still taking morphine for it. I don't take a lot, and I'm not drugged or groggy, but the nerve damage from where and how they took the lobes out have caused me to need the pain medication. So that depends on how easily they can get at the lobe to remove it.

Chemotherapy does cause pain for some people (me) so don't be discouraged if you continue on it. Your body will tell you when you don't need it (pain meds) anymore.

I hope this helps!

Judy in MI

[Muriel]

My story is almost identical to Judy's: Upper R lobe in 2003 and 18months later, upper L lobe, both staged at IB and as primary tumors. I also had chemo following the surgeries. Now I'm a 9+ year survivor.

Muriel