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elkiesmom

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Hi. My husband found out he had lung cancer May 23. After all tests were done we found out it was nsclc.Last week we went to see the surgeon at Moffett

cancer center. He said he can operate on my husband since it doesn't

seem by all the tests that the cancer has spread. Even though the

nsclc

is 10cm it is well contained and he will try to only take the one

lobe

out but might end up having to take the whole lung out. After the

surgery he will then start chemo as a safe guard.He will have his

surgery on July 26th so I am keeping my fingers crossed.My only

concern

is that we found out on May 23rd but we are waiting until july 26th

to

start any treatment. Though when I said that to the doctor today he

said that this is a small growing cancer.I hope he is right.

We are also having a problem with the staging. I can't get a doctor to

stage it for sure. It might be a 2 or maybe a three. All I know is

even though the mass is 10cm they will do surgery July 26th. The pet

scan showed it had not spread so from my reading on staging I have to

say he is a stage 3a. I think I am right. Our surgeon at Moffitt said

he can get it out including all the lymph nodes if they turn up to

have cancer cells in them though the pet scan didn't show this. He

will try taking one lope out but if he has to he will take the whole

lung out. After the surgery is done our oncologist will start chemo.

Has any had the entire lung out and if so what should we expect. BTW

my husband has had Athsma all of his life. This concerns me but not

the doctor. I do know that it will devastate my husband if he has to

reley on oxygen the rest of his life.

Lorrie

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Welcome,Lorrie. If the tumor is fully contained within the lung and not outside, then the Stage would probably be II. They will know more after the surgery because they will take samples in the area to see if they detect any escape from the lung.

My wife also has asthma. In fact, since she is not a smoker, we think maybe the irritation from the asthma and allergies over the years may have made the lung ripe for cancer. She did not have a lung removed, but she did survive a severe case of bilateral pneumonia. Best to you both. Don

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Hi Lorrie,

Welcome. Sorry to hear about your husband's diagnosis. I know this is such a scary time. I think the fear of the unknown and all the unanswered questions are the worst.

I agree with Don on the staging information. They will know more when surgery is done.

I did have my left lung removed and let me tell you it "isn't the end of the world". Just because you have one lung doesn't mean you are on oxygen for the rest of your life. I had oxygen in the hospital with a 5 day recovery. I had the tank sent home but only used it after I exerted myself over the first week - a good 5 minutes of air would help. After the week it went back to the hospital and haven't required it since.

Each individual is different in their recovery. But there are individuals here that live a productive life with 1 lung, and others that live a productive life on oxygen. The key here is that they are ENJOYING LIFE!!

Keep us posted on how your doing,

Wendy

There are many people living with 1 lung here on the board. Many

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Welcome,Lorrie. If the tumor is fully contained within the lung and not outside, then the Stage would probably be II. They will know more after the surgery because they will take samples in the area to see if they detect any escape from the lung.

My wife also has asthma. In fact, since she is not a smoker, we think maybe the irritation from the asthma and allergies over the years may have made the lung ripe for cancer. She did not have a lung removed, but she did survive a severe case of bilateral pneumonia. Best to you both. Don

Thank you Don and Wendy for the kind welcome.

This was so unexpected for us as I am sure it is for everyone. My husband stopped smoking 28 years ago so we never thought he would have to worry about LUNG CANCER.

What threw us in a tizzy was when we went to the first surgeon in early June and he said that if he found any Cancer out side of the right lung (that included the lymph nodes) he would close my husband up and do no more.That is when we went to an oncologist near us who had my husband have a PET scan and then referred us to the Moffitt Cancer Center for a surgeon. This surgeon seemed so positive that he can operate and he did say he would take out as many lymph nodes as he needed to.He also said he might take out only one lobe or if need be the whole lung. I just don't understand how two doctors can be so different.

I do feel so much better knowing your story Wendy regarding the oxygen. That really had me stressed and Don thank you for explaining the staging. Every message Board that I have been on the posters always knew what stage they had before treatment and I thought that there was something wrong with our Doctors not knowing What stage my husband had.

Thanks ever so much again

lorrie

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HI..sounds so familiar. I too had a 10.2 cm tumor, (left lung). Told if media scope found more involvement, they would close me up, etc. Turned out the durn thing had amazingly remained isolated, so theres a good chance they got it all. Samples showed margins and nodes clear..scans were clear later. Unfortunately, the tumor was grown up against the main pulmonary blood vessel which supplies the other lobe of lung, so I lost entire left lung. And no, after weaned off oxygen in the hosp., I never had any at home. Mind you, its a bit tuff to adjust to it, (the first showers were a bear, ...panic when breathing is restricted.) (ONe of those shower hoses w/spray end, plus a bench to sit down in shower helps ooodles.) But it gets better, slowly. Im one year out from surg., still get winded easily, cant do heavy lifting or projects that require much exertion...but can walk and excercise..and am comfortable around the house for the most part.

BTway, left lung is smaller, 2 lobes compared to 3 lobes for right lung, so that matters somewhat, I guess. Anyway, hope surg. is sucessful, and ur luck is at least as good as mine...keep us posted, ..take care...Rich B.

(Oh, my Onc. gave me flu shot and Pneumonia shot later , as we are now "at risk" for respiratory complications , like senior citizens, etc.)

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I forgot to mention; I never knew my staging either till well after surg...surgeon rattled it off one morning, but it went right over my head..(6 am), so I got copies of my pathology reports later to be sure what it was..1-B.

And; u may find its necessary to sleep in a recliner, or propped up some after surg...I couldnt lay down in bed, ..combination of fear of pain and fear of suffocating, I guess..mostly psycological. Slept in recliner for 8-9 months before I gingerly laid down in bed..one side only. heh...just my advice...nurses were totally understanding of this..say its common to not want to lay down. Ok..good luck..Rich B.

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Hi Elkie'smom

The process of staging really relies on the results of many tests rather than one or two. I wasn't completely staged until all of the iformation from all of the tests were in. All of the tests: chest xray, pathology report from needle biopsy, Chest abdomen, pelvis CT Scan, PET scan, bone scan, mediastinoscopy and biopsies of lymph nodes from BOTH sides of the trachea and brain MRI.

Has your lung surgeon talked to you about doing a mediastinoscopy? That is where a small incision is made at the colorbone height and biopsies are taken from the lymph nodes there. If lymph nodes are affected on the same side as the diseased lung, then it is my understanding that the doctor will flip him over and remove the lung. However, if the nodes are positive on the other side "contralateral" side, then he would be closed up without removing the lung.

With me, the nodes were positive on both sides, so my lung has remained with me. (I cried in sadness about that one.) Unless the protocol has changed and I don't know about it, this is state of the art treatment and process of whether or not the lung remains. Please clarify with the surgeon his intentions.

You are doing a good job in your homework. If it were me, I would want my lung out yesterday if I had the option. Just being honest here.

Cindi o'h

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Just want to say welcome. Doctors never discussed Staging with me. My tumor was touching the lining of my lung so I had to have chemo and radiation before surgery ( and chemo after) I will be an eight year survivor this December! Please keep us posted on how all goes . Donna G

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My husband had an upper right lobectomy at Moffitt on 5/2/05. His surgeon was Dr. Sommers. Moffitt is a great hospital, they will take good care of him there. Ken has some emphysema and that caused complications after his surgery (leaks). He went home on oxygen 24/7 and now is down to just a toke now and then. I was worried he would be on it forever, I rented an oximeter (the finger thing) when we got home. It was gradual but after the first month he starting improving quickly. After they got the pathology back they staged him at a 1A, which made us both cry (with relief). The waiting is hard, if you have any ? about Moffitt let me know.

Karen H

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Hi Lorrie: I had to wait a month for my first surgery. The waiting was the worse part. I was told that if the lymph nodes outside of my lung, for example on my mediastinum, were malignant, they would abort the operation. The thinking is that if it had gotten to the lymph nodes outside the lung, it is systemic and uncontainable. Fortunately, my mediastinum was clear, and they proceded with the operation. I did not receive my final staging until after the pathology of my removed lobe, a few days later. I was stage 1b. I recovered fairly easily from the first operation. I did not notice any shortness of breath.

About a year later I had a second cancer in my remaining lobe and had it removed last February. I was staged 1a after surgery. When I tried to sit up for the first time, I got out of breath. I had to be on oxygen for a couple of weeks at home. I can do any normal activity now without getting short of breath.

I did not do chemo after the first operation. If I had, maybe I would not have gotten the second cancer. I am doing chemo after my second operation. Today is my last infusion.

I hope your husband's operation has the best outcome possible, stage 1b, with clean margins, and that he has a fast recovery.

Don M

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My husband had an upper right lobectomy at Moffitt on 5/2/05. His surgeon was Dr. Sommers. Moffitt is a great hospital, they will take good care of him there. Ken has some emphysema and that caused complications after his surgery (leaks). He went home on oxygen 24/7 and now is down to just a toke now and then. I was worried he would be on it forever, I rented an oximeter (the finger thing) when we got home. It was gradual but after the first month he starting improving quickly. After they got the pathology back they staged him at a 1A, which made us both cry (with relief). The waiting is hard, if you have any ? about Moffitt let me know.

Karen H

My husband had an upper right lobectomy at Moffitt on 5/2/05. His surgeon was Dr. Sommers.>>>>>>>

Hi Karen

My husband's surgeon is Dr Sommers also We were going to go see Dr Robertson but he is going on vacation so we didn't want to wait any longer so he refered us to Dr Sommers. My husbands cancer is in his right Lung also. We had been told that the surgeon would first do a small operation to see if his lymph nodes had any cancer cells in them but Dr Sommers said he would not do that he would just take the mass out and as many lymph nodes that he needed to do.I liked that because he seems so sure of himself and there is no IF's in his words.

Lorrie

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I forgot to mention; I never knew my staging either till well after surg...surgeon rattled it off one morning, but it went right over my head..(6 am), so I got copies of my pathology reports later to be sure what it was..1-B.

And; u may find its necessary to sleep in a recliner, or propped up some after surg...I couldnt lay down in bed, ..combination of fear of pain and fear of suffocating, I guess..mostly psycological. Slept in recliner for 8-9 months before I gingerly laid down in bed..one side only. heh...just my advice...nurses were totally understanding of this..say its common to not want to lay down. Ok..good luck..Rich B.

Thank you RICH.

I told my husband that was what he would have to do. I had 4 broken ribs and a collapsed lung due to an accident 12 years ago and I know the pain of sleeping on your back. I also slept on the recliner for a few months and my dear husband slept in his recliner also. He tends to forget these things so I wanted him to be prepared for that also. It just seems so unfair that he has to have LC and I who am a smoker does not.(I only smoke outside or in my bathroom and I have done that for the last 5 years)

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Hi Elkie'smom

The process of staging really relies on the results of many tests rather than one or two. I wasn't completely staged until all of the iformation from all of the tests were in. All of the tests: chest xray, pathology report from needle biopsy, Chest abdomen, pelvis CT Scan, PET scan, bone scan, mediastinoscopy and biopsies of lymph nodes from BOTH sides of the trachea and brain MRI.

Has your lung surgeon talked to you about doing a mediastinoscopy? That is where a small incision is made at the colorbone height and biopsies are taken from the lymph nodes there. If lymph nodes are affected on the same side as the diseased lung, then it is my understanding that the doctor will flip him over and remove the lung. However, if the nodes are positive on the other side "contralateral" side, then he would be closed up without removing the lung.

With me, the nodes were positive on both sides, so my lung has remained with me. (I cried in sadness about that one.) Unless the protocol has changed and I don't know about it, this is state of the art treatment and process of whether or not the lung remains. Please clarify with the surgeon his intentions.

You are doing a good job in your homework. If it were me, I would want my lung out yesterday if I had the option. Just being honest here.

Cindi o'h

Hi Cindi

Yes I do the homework but I don't know how well. I want to know as much as I can so if need be I can guestion the doctor about my husbands care and treatment. We have been married for over 41 years and he is my life as I am his.

You mentioned mediastinoscopy? I think that is what the surgeon said he wasn't going to do. he said his goal is to get the mass out and if need be all the lymph nodes that have cancer cells in them. I really hope he means what he said. To open and then to just close him would be devestating. That is what they did to my dad 30+ years ago. My dad was the same age as my husband when he was diag having cancer (62). I feel as this is a rerun of my parents life.

Thanks again Cindi and prayers for you.

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I had parts of the upper and lower lobes of my right lung removed in the first two thoracic surgeries, but eventually had to have the remainder of the right lung removed due to recurrence and spread. I would have been much better off had the whole lung been taken out at the very beginning.

I had some complications with this last Lung surgery, and I did end up on supplemental oxygen full time for about 4 months. It was not the worst thing that could happen. There are portable units that can be pushed along, and even smaller units that can be carried in a shoulder bag or back pack. Bottom line, is my being on O2 was aggravating, but really didn't interfere with me doing too much...except for Bar-B-Quing, or sitting around a fire, candle light dinners. Have to be very careful when near open flame if you're on oxygen.

Now I use the O2 when my oxygen saturation levels drop. When I need it I use it. If I catch a chest cold, or develop bronchitis in my lung I use it. Sometimes something I want to do may be more than I CAN do without supplemental oxygen. So I use it then, too.

Being on full time oxygen can only devastate us if we allow it to do so. I don't golf, but I did see a gentleman at a local course using a golf cart, and the M-Series of Supplemental oxygen while HE played a few rounds.

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Hi Lorrie!!!

My staging was not known (or at least disclosed to me)until much after the fact. I still am not sure if was 111A OR 111B. I don't think that should be taking up any of your worry time with staging.

Also about different doctors with such different views. Well, you need to read MY STORY in that forum. You will see DIFFERENT.

You sound like you are in a great place for treatment right now. I had an upper right lobectomy. I was on oxygen until early the morning after surgery. Yep - that's right! That was it! So don't be putting the horse before the carriage, so to speak.

And finally, I was dx in late Sept./early Oct. I had surgery Jan. 4, 2005. That was a gap of several months!

I am hopeful things will continue to improve for you and your husband. I will have you in my thoughts and prayers. Please keep posting for us!

Best wishes,

Kasey

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I had parts of the upper and lower lobes of my right lung removed in the first two thoracic surgeries, but eventually had to have the remainder of the right lung removed due to recurrence and spread. I would have been much better off had the whole lung been taken out at the very beginning.

I had some complications with this last Lung surgery, and I did end up on supplemental oxygen full time for about 4 months. It was not the worst thing that could happen. There are portable units that can be pushed along, and even smaller units that can be carried in a shoulder bag or back pack. Bottom line, is my being on O2 was aggravating, but really didn't interfere with me doing too much...except for Bar-B-Quing, or sitting around a fire, candle light dinners. Have to be very careful when near open flame if you're on oxygen.

Now I use the O2 when my oxygen saturation levels drop. When I need it I use it. If I catch a chest cold, or develop bronchitis in my lung I use it. Sometimes something I want to do may be more than I CAN do without supplemental oxygen. So I use it then, too.

Being on full time oxygen can only devastate us if we allow it to do so. I don't golf, but I did see a gentleman at a local course using a golf cart, and the M-Series of Supplemental oxygen while HE played a few rounds.

Hi Faye

Gary has not played golf since moving to Florida last August.It is to darn hot and we are spoiled having lived in California for 25 years. He just loves that stupid game. The last time he played was a few months ago when we went back to Ca to visit with our grandchildren.

What he is worried about is his job and that requires travel. They have been great about this illness and will work with him but the time will come that he will need to resume his job discription. We cannot afford to lose his benifits. he works from home two days a week and the other three he goes to the office. This is great right now and will be after surgery. Right after and for a few months he will work from home everyday and that is fine with the CO. It is after a few months that he worries about and oxygen and travel does not go together or so he thinks.Two years ago he had the guts to quit a high pressure job and came to this great little co and work here until he would be about 68 and then just do consulting for other CO's. What do they say about the best layed plans?

Lorrie

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Hi Lorrie!!!

My staging was not known (or at least disclosed to me)until much after the fact. I still am not sure if was 111A OR 111B. I don't think that should be taking up any of your worry time with staging.

Also about different doctors with such different views. Well, you need to read MY STORY in that forum. You will see DIFFERENT.

You sound like you are in a great place for treatment right now. I had an upper right lobectomy. I was on oxygen until early the morning after surgery. Yep - that's right! That was it! So don't be putting the horse before the carriage, so to speak.

And finally, I was dx in late Sept./early Oct. I had surgery Jan. 4, 2005. That was a gap of several months!

I am hopeful things will continue to improve for you and your husband. I will have you in my thoughts and prayers. Please keep posting for us!

Best wishes,

Kasey

Kasey I just read your Signature. OMG

I will read your story. Is it in the same topic nsclc?

Lorrie

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It is in the MY STORY forum - at the top of the page right under the WELCOME forum!

Kasey What a scary but wonderful story. Shame on all those doctors that got it wrong.

You are so right the internet saved your life and that is why we all use it.

Lorrie

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Hi Lori,

Kasey does have an amazing story. Thank G-d for this forum that helped saved her life.

I actually keep her story on our frigerator, as it is so inspiring.

My husband was told his tumor was so large that he would probably lose his whole left lung. Also it was lying on his aorta but they were not sure it was just lying on top or attached. If it was attached then they would just sew him up.

Everything turned out great. It was not attached, but took the doctor over 7 hours to carefully cut the tissue away and not to nik the aorta. The other good news was he only took a lobe. They took biospys of I think 7 lymph nodes and they were all negative. So his staging stayed at 1B.

Again, I wish you guys the best of luck. Fingers and toes crossed for the best results.

Maryanne

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  • 2 weeks later...

Hi Elkiesmom~

There is lot's of hope for people still on oxygen like my mom. She had a blood clot after surgery that may have left too much scar tissue for her to not have to use the oxygen. We're not sure! When she is sitting or walking for around the house for short periods she doesn't need it. She has even ventured into stores without it!!! The FAA just ruled that passengers can now take their own portable oxygen on the plane!! It used to have to be rented from the airlines and could be expensive! You need to check with each carrier as it was not mandated that they comply.

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