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New Member NSCLC


Gamblerpl

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I'm so glad I found this site. There appears to be many caring informative people here. I'm a 55 yr old female living in Alabama. I went to the DR for a head cold and he insisted on a chest x-ray that showed a "spot" in the upper right lung. CT scan 8/31/04 and my Dr said it showed it was cancer. He went on like I was near death and I needed to act now and act aggressively and he referred me to a Pulmonary who biposied 9/7/04 and it came back NSCLC. He told me he didn't think I could survive surgery because of my breathing and, ordered a PET Scan that was done 9/15/04 and left town for two weeks without telling me. I kept calling his office to get the results and find out what I needed to do next and he never returned my calls. I was really upset that no one would tell me anything. One of his nurses finally told me the PET scan showed the cancer was only in that one spot. I lost confidence in this Dr, he didn't appear to care, and referred myself to UAB in Birmingham AL and was seen the day after I called for an appointment!! No doom and gloom, just excersice my lungs... gave me a breathing thingie for that... and told me to walk or excersie twice a day and he would remove 3/19 of my lung on Nov 8 and I would 16/19 left!! He didn't mention Chemo or radiation, just the surgery. To me just the surgery is a big scary deal. But doesn't seem so bad after reading what some of you have had to endure and have maintained such a positive attitude!! I have many questions and will be posting to the NSCLC thread later. Thank you all for being here!!! Paula

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Welcome Paula and sorry to hear about that. Glad to see you changed to another doctor. Can't speak on surgery cannot have it, but it is the best way to go. I'm sure you will here from others. Stay with us and let us know. This is the best place with the best people for caring, sharing and knowledge. Stay focused and positive. Take it one step and one day at a time. Knowledge is the key, learn as much as you can. Go forward and don't take no for an answer. Peace, take care and God Bless. Rich

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3 1/2 years ago I had a malignant nodule, and 1 lobe of my lung removed. No chemo or radiation, and I did get through it. None of us knows what is around the corner for us--lung cancer or not. Just try to take one step at a time.

I'm glad you found this site. Use it.

gail

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Hello Paula,

Welome to the group. Sounds as if your roller coaster ride has started...glad you found this group to share your experience. Rides are much better with friends who know what you are going through. And you surely will find those friends here.

I am sorry that you had that bad experience so early on. Also, that you have the wisdom to know that you don't want him on your ride...goodness knows, it is scary enough!!

Hope for the best for you. Right now, there are so many advances in treating lung cancer, that it is a value to do a little research on your own to discover what options best fit your situation.

Again, a big welcome...

Cindi o'h

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welcome Paula,As you have already noticed there are many knowing and caring people here.Just about anything that comes your way someone here has been there and done it and can give answers to questions.There are also many survivors here so don't give up hope.Keep the faith.Again Welcome aboard.

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Welcome, Paula. I'm so glad you were able to get to a doctor that cared and acted. It sounds as if you're in capable hands now -- but be prepared for possible reconsideration after surgery. The guidelines for treating lung cancer change constantly -- and probably for the better.

Originally my husband was only slated for surgery; that was successful but the surgeon discovered(and removed) one little lymph node with cancer, so it was on to chemo. All of his tests have been clear so far, but now we're doing radiation -- just in case. The radiation oncologist made a very strong case for it because of that one errant lymph node--there might be others in there waiting to pounce. Your case may indeed be completely different (I hope so!) so you may be spared all this. In any case, surgery is always regarded as the best option If Possible -- and you're lucky to fit into the surgical category.

Be sure to build yourself, and your lungs, up as much as possible before surgery. The exercise will help and breathing exercises as well. I hope that you can get an epidural for the surgery. It didn't work for my husband (I think he had had too many back surgeries prior to this) so he had to be put on morphine. The first two days after surgery were not pretty, although the morphine pump did work, but then he improved by leaps and bounds, something that apparently is a characteristic of this type of surgery.

Keep coming at us with all your questions -- we'll do our best to field them!

Ellen

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Paula-

So WISE of you to get a second opinion right away! The new doc sounds positive. The surgery is certainly DOABLE. Just keep up the exercises...especially using the breathing "thingie" :wink: (spirometer) AFTER surgery and incremental walks ASAP. Will look forward to more conversations and consider yourself very welcomed.

ps You might want to do some research regarding the latest recommendations for follow-up chemo after surgery...gettting a second opinion on it might be wise as well. The decision is not clear cut, but I wish the information had been out there when I had my surgery.

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Hey Paula,

YOu are so right..all of us have looked on the surgery as a big scary deal!! But as others have said, even though it doesn't necessarily feel like it, you are lucky to be able to have it...

Keep exercising and before you know it, you'll be recovering from the surgery!! You sound like a go-getter since it sounds like you have already taken charge of your health care... I think you will do just fine!!

Good luck and keep posting...

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Paula,

I am from Alabama as well. I went to UAB for my surgery in March 2003. I did very well after and have been very pleased with the pain level I have...not nearly as bad as many on here tell us. I used Dr. Cerfolio. I didn't like his personality but did like the results and would use him again if needed. He did find onepossitive node that showed up in the path report so I did go on for chemo and radiation. I went to the Bruno Cancer center at St. Vincents for that. Much less trouble to get in and out and I have been very pleased with my results so far. I have a new set of scans the 22nd of this month, but so far have been NED (no evidence of disease). I wish you the best. Nice to have another southerner in our group even though I know you would rather not be here. Welcome.

Nina

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Welcome Paula,

I didn't read all of the replies but my experience, as far as LC is concerned, reads like Gail's. In January, it will be 4 years since I started down that road. Like, Gail, I had a lobectomy.

I must express my concern with the fractions and their possible insinuation. If you have 5 lobes and one is removed, one could say that 1/5 was removed. If that is all, then you really don't even notice any difference in lung capacity, or shall I say that I didn't.

The fraction you mention causes me to wonder just what type of surgery are they contemplating. If it is not the resection of a lobe, is it partial?

It is normal to want to learn more about the kind of surgery you are going to have. You may wish to read up on "Nodulectomy", "Partial Lobectomy", "Segmentectomy", and "Wedge Resection".

May God be with you. He likely has a plan for you here on Earth many year from now. Be thankful it was discovered early.

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I'm from the Dothan area, lower southeast part of Alabama. I wasn't to sure about the Dr.'s 3/19 out and 16/19 left either. I was hoping someone would pick up on that if it didn't sound right to them, because I really had no idea what he was talking about. To me you either have 100% or a percentage thereof. And I'm holding my breath on the surgery only... have no idea what will come after....

Thank you all for being so wonderful! I feel I'm among friends and will survive this beast with a lot of help and prayers. I'm ready for the NSCLC board and will see you all there soon!

Hugs and prayers,

Paula

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3/19 vs. 100% vs. 1/5...

3/19 is almost 16% of your lungs. The lungs consist of five lobes, two on the left, three on the right, but the lobes are NOT equal size - therefore, losing one lobe is not an automatic "one fifth of lung tissue". I had two lobes of my right lung removed, approximately 55% of the right lung.

Your doctor could be referring to an operation to remove a wedge and resection, NOT a whole lobe, or to one of the smaller lobes being removed. Did s/he happen to mention what exactly was going to be removed?

It IS a big scary, but it's achievable...

Keep hangin' in there, and keep coming back!

Welcome,

Becky

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