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What Do I Expect Next


luvmydog2

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Hello Everyone,

I was diagnosed with NSCLC 3/03. My CT Scan revealed a mass on my left lung approx 7 cm in size. Scan also revealed 2 spots on my lymph node less than 1 cm. My onc said that he didn’t consider anything less than 1.5 cm to be abnormal. My onc said he felt like the way to go with my type of tumor was surgery. For the next 3 weeks I went through extensive testing.... CT, bone scan, pelvis scan, brain scan and PET Scan. All these came back clean and my onc determined that the tumor was on the left lung only and had not mat yet.

When I finally saw my surgeon, he said he was not sure he could remove it if he went in there. He recomended Chemo and Radiation to shrink it. I had 5 chemo treatments (1 per week) and 25 radiation treatments. The treatments were Carbo and Taxol. I had no side effects that I could tell. My tumor shrunk to approx 1.5cm by the last radiation treatment.

I had surgery to remove the lung on 6/17/03. He also removed the lymph node while he was at it. The only major problem I am having right now is Short of Breath. I only have this problem when I get soreness in my back and side area where the incision is. Other than that I am fairing well.

The Path report came back that they got it all out. I don’t see my onc for 3 more weeks so here are the questions that are going through my mind.

Does this report mean that Cancer is gone or just gone from this area. I know each person is different but now that surgery is over ...what next. Am hoping that those of you that have had this surgery can tell me some things to expect in time. Would like to know how other people have done after complete removal of lung.

After reading hundreds of your post, I am glad I found this site. There is so much love and support here. I will be keeping each of you in my

Prayers.

Bruce

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Bruce,

Welcome to the boards! I had surgery just a day ahead of you so I am new myself.

I'm sure your Oncologist is the only one right now with the facts, but from what you have written, your cancer was just in your lung and hadn't spread. I would imagine that if the report says that they got it all out, this means that the cancer is gone at this time but thats only my interpretation of your post. I would suggest that if you find it hard to wait the 3 weeks (understandably!), maybe call your Oncologist and talk to him on the phone about your diagnosis since anyone else (especially on a board) would be merely guessing I would think.

I know that in my case, they say that it is gone; my lymph nodes were also taken and they were clear of cancer. As far as the future..My surgeon tells me that I have a 70% chance of not having any cancer come back and I will have appointments for tests every 3 months for the next 2 years to keep an eye on things. After 2 years I will have them every 6 months. Although they didn't take my whole lung, my doctor took 2 lobes of my right lung. I am okay with the breathing part..I don't get shortness of breath often..but I do still have pain. I do run out of breath if I talk on the phone for a long time (as you can see by my posts I tend to be long winded :lol:) but otherwise I'm okay.

Sorry you have the reason to find us but again, welcome!

Debi

Age 46

Stage 1a nsclc

Surgery June 16, 2003 upper & mid lobe removed

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HI BRUCE,

NO ONE KNOWS THE ANSWER TO YOUR QUESTION. THEY TOOK THE LYMPH NODE AND THE CANCEROUS TUMOR OUT. YOU HAVE HAD CHEMO AND RADIATION. AFTER YOUR SORENESS GOES FROM THE SURGERY YOU HOPEFULLY WILL BE IN GOOD SHAPE.

ARE THEY GOING TO DO ANYMORE CHEMO? PROBABLY NOT. NOW YOU HAVE TO LEARN TO LIVE WITH WHAT HAS OCCURRED AND NOT GET TO HUNG UP ON WHAT MIGHT BE. WHAT MIGHT BE COULD HAPPEN TO ANY OF US. GO WITH WHAT IS AND TRY AND GET BACK TO YOUR NORMAL LIFE. GOOD LUCK.

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Hey Bruce; Welcome to wonderful world of 1 lungers, :):):) ; gotta be grateful cause it could a been worse. They took mine on May 2, 2001, along with 18 nodes. I didn't need any chemo or radiation only follow-ups and was told pretty much the same thing you were.

I was told that they got it all ( squamous type by the way), and that I was cancer free, however, :? I was also told that there are no guarantee's, and that microscopic cells could still be in my body and that I would have to be closely watched. There always seems to be a " HOWEVER " with cancer. :x

Anyway, my follow-ups were ct scans of the chest, abdomen and brain every 3 to 4 months for the first 2 years. every 6 months now. :)

Seems that your recovery sounds similar to mine, shortness of breath and pain / soreness in the back. The shortness of breath will get better but it takes time. I still have problems climbing stairs and when I exert myself. But, ya gotta keep pushing, the more exercise the better. By the way, the family pic is 8 weeks after surgery, I was hiking in the rainforests of Costa Rica. Wasn't easy but I was determined. :shock:

Anyway, lots of exercise and take the pain meds when your suppose to .

Be well and God bless

Bobmc - NSCLC- stageIIB- left pneumonectomy- 5/2/01

" absolutely insist on enjoying life today"

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Hi luvmydog2! I love your handle 2! (I have 2 Beagles, so 2 and dogs go together)

Everyone here is smart enough not to play onc. As mentioned, your onc is the one you need to be talking too. Don't be afraid to ask specific questions. I do, and don't feel squeemish or guilty about it.

I am not sure what you mean about anything less than 1.5cm not being abnormal. My tumor was only .8 (Yes DECIMAL POINT 8 cm, 8/10ths of 1 cm ) and they took the whole lobe it was in. I was happy to give it to them too! .8cm was still too big for my comfort :wink: I have been declared cancer free and have been given every reason to believe I will live a long life. BUT with the caviats mentioned here already.

I will not consider myself "cured" until 10 years from now, and even then, there is always that little twinge of uncertaincy. This is lung cancer. Normes advise must take over in this situation, if you dwell on the "what ifs" you are wasting your life. Enjoy it!

My follow ups are every 3 mos with blood work and xray, every 6 with bloodwork and CT, plus 6 month follow ups with the surgeon after the cts, and I also have a pulminologist that helps with the shortness of breath and other lung issues I might have due to the surgery.

The shortness of breath will diminish, it's still soon for you. Doesn't seem like it every will right now tho, does it? :wink: Trust us, it will. I had my surgery on 4-3 of this year, now I ride a bike daily and today I did a 5 mile hike. That was something I thought I would never do again, even before the surgery!

Now, 5 miles doesn't seem very much right now, but I was with a woman 5 years my senior, and a boy aged 12 and when we climbed the steps to the top of a firewatch at 7000 feet, I was the ONLY one NOT out of breath. Cool, huh?

Bob is wise, exercise regularly, stay away from the ciggies of you smoke(d) and it may even seem better than before dx. I know I feel better now than I did a year ago, and I was asymptomatic at dx! (I went to the docs for a routine physical and some nutrition advise and came out with Lung Cancer. Boy, did I feel cheated! :wink: I could not have made it up those stairs a year ago when I was still at a pack a day and spent all my weekends and evenings with a remote control.

I simply set a goal, that I would NOT be cheated out of doing the things I used to do before middle aged sedataryism set in. And I am making it. You can too.

We wish you a speedy recovery and good news and support from your onc and all the other pros involved.

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Hey Bruce. Welcome.

Exercise and work hard at making your lung work hard; it's the only way to increase your lung capacity. And it will increase. I started a few days after I got home from the hospital after they took out my left lung. Small walks turned into bigger walks, and bigger walks turned into bigger power walks. Soon, that wasn't enough and I got on my bike, and I haven't stopped pedaling since. As soon as I found out that my lung could handle the extra exertion I was placing on it - that it wouldn't explode or something - there wasn't anything I could not do. I find I am now a "one lunger with attitude", like Gina, I'm proud of the fact I can keep up with all the two lungers out there, and even outdo some of them. Everything now has it's own special challenges, like beating someone to the fifth floor using the stairs, while they took the elevator, or racing the bus on my bike in the morning on my way to work; I have to get to the next bus stop before the bus gets there, and while it picks up passengers, I race ahead to the other one two or three blocks away. The challenging part to my little game is when there are no people waiting for the bus at it's next stop. All of this one lung attitude has contributed to my one lung capacity being 64% that of a two lunged man my size. Tested last year.So there!

David P.

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Hi my lymph nodes also tend to get larger---they were 1.2 at my operation and they were non cancerous my surgeon at the time also thought that was in the normal range for lymph nodes----

recently, I had an infection and the nodes went up to 2.0---they were biopsied and were non cancerous as well

lymph nodes can enlargen due to infection

so if they seem to have got it all and biopsied the nodes, I would say that is a very good report

regards Eileen

nsclc stage 1A lobectomy 6/00

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Thanks everyone for the replies. Norme, I never thought of it the way you put it. Guess I was only acting scared for a while. Other than being short of breath and sore I am doing good. I have moments that I feel like the short of breath is coming from my radiation. I was told that it was a side effect. I have been off radiation now for little over 10 weeks and that is what scares me...that it is not from radiation. My pul dr said could be scar tissue which never goes away. One good note is I see my onc and radiation doctor the 24th and plan on asking about this.

Once again, thank you all for being such a caring group of people. God Bless each of you.

Bruce

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Hi Bruce, my tumor was 6cm and they removed most of my left lung. It does get easier - everyone heals at different speeds. My surgery was three years ago and I just recently completed a half marathon (13.1 miles) in under 4 hours. I use an inhaler twice daily and that really helps - especially since I live in smoggy southern CA. Keep a positive attitude and expect the best. Take care. God Bless us all.

Nancy

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