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Another scared newbie here.


Buttrfli

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Hello, my name is Teri and I am from Oklahoma. Last summer I was diagnosed with cervical cancer and it was discovered during a PET scan that I also have a carcinoid tumor in my right lung along the bronchus tube. It was decided that I go through treatment for the cervical cancer first then deal with the tumor when finished. Now I have finished with the treatment and have moved on to the lung tumor.

I'm was told that radiation/chemo would not treat this type of tumor and surgery is my only option (I have had 3 opinions on this). My surgeon wants to do a sleeve lobectomy next month and my anxiety is through the roof! On my last appointment my doctor asked me what I want him to do if he gets in there and is unable to do the lobectomy and has to remove my entire lung. Do I want him to remove the entire lung or leave the tumor and possibly go to the Mayo clinic. It did not know how to begin to answer him. I don't know what I want him to do!

He is wanting me to have the surgery next month and I am so very scared

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Hi Teri, 

Welcome to the LCSC message boards. I too am glad you seeked out 3 opinions. I have met a couple of people at the LUNGevity HOPE Summits who are living well with one lung if that helps any. I hope someone with surgery experience will come in and comment soon. LUNGevity offers a one-on-one LifeLine Program that will connect you with a personal mentor who has gone through a similar experience as yours. This is a free service. Here is the link to sign up http://lungevity.org/support-survivorship/get-connected/lungevity-lifeline

 

I look forward to your updates. Sending positive thoughts your way. 

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Hi Teri, my name is Cathy and I am from Florida. I completely understand your fear. In 2008 I was diagnosed with stage IV lung cancer. I had a bilobectomy of the right lung and was terrified. Everything went well with the surgery and I had follow up chemo for several months. Surgery is not always an option so this sounds positive.

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Hi Teri, I didn't have my whole lung removed but I know of 3 people who did and they are all doing fine now.  I'm going to share your post on my FB page and share it privately with my friend who had her whole lung removed.  Hopefully she will give you some input.  The fact that the doctors feel surgery applies is a good thing!

 

Warmly,

Alisa

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Hi Teri, my husband (aged 71) had his left lung removed in October and he is doing fine. The pain was really well managed and he was up and walking and doing exercises with a physiotherapist the day after the surgery. He had to sleep propped up on a wedge pillow for some weeks after coming home and could not do any lifting. Walking and exercise were really important. Waiting for the surgery was really, really difficult. Very best wishes Judy

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Welcome Teri,

You've gotten some good advice here. Sadly most people dx with lung cancer are not given the option of surgery so that in itself is very positive.  Those who have had the surgery can give you some first hand advice.

Keep posting and keep us updated on you.

Best Hopes,

Katie

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Thank you everyone. I feel tons better knowing that the surgery is really positive. I never thought before that surgery wasn't an option for everyone, so I feel bad for sounding like a whiny child. I look forward to learning from everyone here!

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My thoughts are to never, ever feel bad about any emotions connected to this Teri. Emotions that have even been experienced before seem to come up, and then they fade (and sometimes recur). When my husband was dx, lung cancer was not even a distant thought in our minds. He was so healthy and no symptoms (and he has never smoked). We lived a totally surreal existence after the dx waiting for the pneumonectomy. As I mentioned above, the waiting was by far the hardest part - it is easy for the mind to go a bit 'crazy' at times. I actually asked my husband's surgeon if he had ever lost a patient on the operating table and he said 'no'. That set our minds at rest - somehow I didn't think my husband was going to be his first! After the major surgery (he had the full thoracotomy) everything has been so much easier to deal with for us both. He has just completed 4 cycles of adjuvant (mop up) chemotherapy to hopefully zap any stray microscopic cancer cells and that has gone really well too. Scans last Tuesday and results in a week. It is a whole new world - new emotions, new vocabulary, new everything. All the very, very best, Judy

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Hi Teri, I'm from New York and two years ago had the very same thing. My tumor was completely blocking my lower right lobe and pushing into my mid. I was terrified, but wanted it out as soon as possible because the thought of it spreading was unbearable. And like your doctor told you, carcinoids don't respond to chemo and I wasn't interested in possibly shrinking it with radiation (radiation has loads of other potential side effects which I wanted to avoid if I could)- I just wanted it out. My surgeon performed a bi-lobectomy with VATS the week after I met him. It was really not that bad. I had issues with morphine afterwards, but I was determined to get up and move so I could get home to my family. Which I did five days later. A week after the surgery I got a call from my amazing surgeon with the pathology results- clear margins and no node involvement. My scans have been good since then. Please reach out if you have any questions. You are so brave sharing your story! All the best to you.

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Teri I am on the other side of this from care taker and advocate point of view.. I Follw a young man on Facebook by name of Sean Swarmer.. Her also ahd surgery and only has one lung.. He ahs climbed mountains, Been to south pole and run Marathons I can not ofer personl advice but can give some support... wnat to share his page with you.. best I can offer right now.. http://seanswarner.com/ hope this helps some.. I think surgery is awesome if you have the chance becasue so many do not to get that done for treatment. Keep us posted on what happens please!

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