Stage 1 non small cell lung cancer

January 2009, chest pain caused me to go to ER to have it checked out. Never had pain in my chest like this.... CT scan revealed lung mass, and they were sure it was cancerous.. Met with surgeon, oncologist, cardiologist. No heart problem, but scheduled surgery to have mass removed.
In February 2009 I had my upper right lobe removed that had a 2 cm tumor that was Squamous cell carcinoma, non small cell cancer, stage 1a. My surgeon got all of the cancer and I did not have cancer in the lymph nodes. He did however remove some of the nodes for testing. I seen the oncologist again and he says I do not need chemo, and that my prognosis is great. I am happy about that but I am still worried. I see my oncologist again in October. I can't do anything but worry about this constantly.

Has anyone been told they don't need chemo that has the same type of cancer as me, and do I just need to be thankful that I don't need it? Do I get a second opinion? I had a really bad time during my surgery and after due to a bacterial infection that I contracted. I was hospitalized for 2 months due to this infection. I am terrified of everything now. I really would appreciate any response. I am however, feeling really good, actually better than I have in a very long time.
God Bless.

By MarionW
Posted August 2, 2009 at 5:28 pm
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Well, I was stage 3a and had my entire lung removed in 4/07 over 2 years ago. I did not get chemo and I am doing fine. If I had stage 1- I would be dancing in the street.

Why anyone would want to volunteer for chemo - I have no idea- but it has been shown that chemo doesn't contribute anything to stage 1 and of course has very severe side effects.

Thank God every day you don't need it and go have a ball!

By stage1
Posted August 2, 2009 at 5:33 pm
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Thank you MarionW. That really makes me feel better. I am sorry you had to have your lung removed and I am happy you are doing great.... I do have a question..... With just one lung, do you have problems breathing? I have found with just 1 lobe of my right lung gone it has affected my breathing and I find it harder to breath when it is hot and humid out.

By misself
Posted August 2, 2009 at 5:42 pm
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Hi,yes normally Stage 1a normally doesn't take chemo if they have good margins,no lymph node involvementand only theprimary tumor.I think the tumor would be saall too,and nsclc.I met all that criteria but my cancer cells were pooly differen tiated.So I did see an oncologist who was going to do 6 treatments.Un fortunately I was in the hospital 2weeks later withCOPD complications for 8 days.I was real weak even almost a month later and the Onc recommended,I not have CHEMO AS i STILL HAD A 75% CHANCE OF SURVIVAL OF OVER 5 YEARS.HE FELT THE CHEMO OR STEROIDS GIVEN WITH THE CHEMO MIGHT THROW ME INTO ATRIAL FIB.AS HE BELIEVED CHEMO WOUL ONLY GIVE ME A 5% INCREASE IN SURVIVAL CHANCE THE RISK WASN'T WORTH IT.MY PULMONOLOGIST AND SURGEON AGREED WITH HIS RECOMMENDATION.sORRY ,Y COMPUTER CHANGED TO CAPITAL LETTERS.i AM A SLOW TYPER.HOPE i HAVE HELPED.ANDIB

By Marylou1
Posted August 2, 2009 at 10:59 pm
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Hi,
I had stage 1, one tumor that I had 4 rounds of chemo prior to surgery to shrink it. I had a successful surgery and recovery, with no lymph node involvement and no chemo after surgery.

Six months later, I was told my cancer came back in 3 places. Since then I have been on Tarceva (18 months) and I have had 5 NED scans.

If I knew then what I know now, I would have asked for Chemo after the fact just in case there were some stray cells. Unfortunately, I did not know about it at the time. This was my experience. Hope this helps in some way.
Much Love to all,
Marylou

By MarionW
Posted August 3, 2009 at 12:13 am
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I have significant problems breathing when I walk up stairs or hills though that is getting better. the first 3-4 months were the worst. Right from the start, I did not need oxygen and never have and no one would know I had anything done to look at me.

I am eternally grateful for all the grace I have received. I was still thinking I was going to die for the first 2 years (it was always in the back of my mind).

I know the fear you are inbut I am so happy for you to have a really great prognosis.

By dubis24
Posted August 3, 2009 at 2:10 am
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Hi, I had a LLL in Dec.08. Pathology report came back stage 1a NSCLC. Chemo is not an option, I go to Roswell Park Cancer Institute and I have to trust their opinion. I was told it would cause more harm. The 17 lymph nodes removed with the resection were all normal. Plus I also had a medianoscopy before surgery and no METS to lymph nodes that they could see and pathology was normal. I was on oxygen after surgery for 3 months, then off 1 month and got sick and I have been back on it since. I am going to Pulmanary rehab now. It has gotten better, I highly recommend this. I only need it during exertion now. We never stop worrying, gets easier in time, but I constantly find myself thinking about this all the time. The fear, we have to think positive and make the best of every day. I am back to work and I make sure I do something every day off. Spend my days off with my family and my grandkids. I still have discomfort and there is still some fluid in the chest. I never considered getting a second opinion, but you might want to if you don't feel satisfied. Glad you are feeling better.

By myanjoshmama
Posted August 3, 2009 at 8:08 am
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Hi! My mother just had her URL removed on 7.2.09. She was Stage 1b (tumor was 3.5). She went for her follow up and she does not require chemo either. They also biopsied my mother's lymph nodes (during surgery) too just too make sure they were not cancerous and they were not. I know it is easier to just sit back and say its all over but it is hard. Yes, my mother is extremely happy that she was only Stage 1b but the whole experience is still scary. I am extremely close w my mother so I know how she feels. It is hard but it seems like all of that will pass. This is another phase in your life. Thankfully with a great end result!

By MikeS5
Posted August 3, 2009 at 8:39 am
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Dear Stage 1,

I know this cancer is hard to deal with. I am dealing with my wife who has stage IV NSLC. What I can say to you that if there a recurrence (hopefully this will not happen), there are some amazing drugs that are being able to be administered as a front line therapy. The standard chemo that they use (Cysplatinum and Carboplatinum) are no guaratees to kill this cancer.

The question I wanted to ask you is did they test the tumor they took out for genetic mutations such as EGFR, K-RAS, or ALKS? This could go a long way in your life time treatment to get this test done. That way they maybe able to match you to a targeted drug in case it reappears. That way you will not have to go through painful biopsies or other surgeries. I am not an expert by no means but I am seeing a lot of things at Mass General in Boston with the genetic testing that has been highly successful. They are also developing a test in a clinical trial to test your blood for tumor cells that could be spreading to your body. You may want to look this up. It just got funding from the Stand Up for Cancer Special. I am just giving you some ideas for some peace of mind. I wish you all the best and I will keep you in our prayers.

Mike

By Chum
Posted August 3, 2009 at 9:14 am
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Stage 1,

Rest easy. I was Staged 1a, as you were (my tumor was a bit smaller than yours - 1.6 cm, but anything 2 cm or less is now considered 1a - used to be less than 3 cm was 1a, but they changed that). Chemo is not called for.

Bad news is - it won't matter for several years that your chances of living greatly outweigh your chances of dying of cancer. Every scan - probably every three months for the first year or so - you will feel nervous - get really cranky - bite people's heads off - hopefully just figuratively. Then you will get your scan results and yell to the heavens that you are NED!!!!! The euphoria will last a day or so that first time - what a rush - a real high.

So get ready for the roller coaster - the fun is about to begin!

Courage

Chum

By kentmere
Posted August 3, 2009 at 12:08 pm
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i stage 1b had lobectomy in 2007 with no further treatment i have been fine and go for a x ray in september then hope it will be every year reading some of the posts i just thank god i was lucky and if it comes back i will deal with it at the moment i just thank god for every day i am just glad it was me who had to go through the trauma and not one of my grown up children i am sure u will be fine

By jim_wny
Posted August 3, 2009 at 12:38 pm
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Had upper left lobe removed Dec 07 stage 1A clear margins and well differentiated NO chemo recommended Had my last 90 day scan done in beginning of July . Still all clear and am going to 6 month scans

jim

By stage1
Posted August 3, 2009 at 2:21 pm
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MikeS5, Thank you for your question. To be quite honest with you, I don't know if they tested the tumor for genetic mutations. This is something I will be sure and ask my surgeon about. I was so sick afterward, I was not able to get my records or do anything. How is your wife doing? I know stageIV is a lot different than stage 1, and my heart goes out to you both. I will keep her in my prayers.
I will see my oncologist again in October, is there other questions that I should ask him? I am so scared and have never had to deal with this before.

By stage1
Posted August 3, 2009 at 2:26 pm
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Good luck to you. Sound like you are going to be ok. I hope and pray my cancer does not come back and I will be ok. I wish the same for you.

By MikeS5
Posted August 3, 2009 at 3:00 pm
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Hi Stage1,

My wife is hanging in there. We have the attitude to take it one day at a time and enjoy our lives. Part of my therapy is to just share some of my knowledge and experiences to other people on this website. Cancer is a tough process because you will have ups and downs. I need to find ways of blocking it out. I have 3 young children that we are bringing up. We are very lucky that my wife did well in her profession and that her disability plan was top knotch.

The one thing I would say to you is to do some research on the different therapies. I try to avoid the statistics that they give you and just concentrate on the therapies. It can really be a downer to read up on lung cancer. I know when my wife first got a biopsy in Boston, they saved the specimen and had it tested again. Maybe they saved part of your tumor.

I also wanted to say that maybe your oncologist is not familiar with these tests or does not have access to such tests. I know that when we were first diagnosed, the doctor did not have access to these therapies and could only offer the standard therapies. We then got a second opinion at Mass General in Boston. I am not sure where your located but I would look for the hospitals that are on the cutting edge for this discease. It does not hurt to keep getting second and third opinions. Good luck and keep strong.

Mike

By mkubee
Posted August 3, 2009 at 5:24 pm
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My mom was diagnosed with I-B NSCLC in May 08' - She had the surgery and was told they got it all, 'you're cured..(blah blah blah... I really didn't like that surgeon she had, but I digress) Her oncologist(as well as my sisters) recommended chemo, due to pleura involvement, but left it up to her as what she wanted to do, she chose the chemo. A 'mild dose' which I didn't find that mom tolerated very well. In Mar' 09, my mom developed nausea that wouldn't go away and became progressively worse over weeks -- they told her she had, gastritis, which turned into acid reflux, then h. pylori, they nearly killed her with heavy rounds of antibiotics -- the oncologist said, whatever it is... and I quote 'it's definitely not cancer'. She went through I don't know how many cat scans... a pet scan... head ct...ultrasounds...in I would say a matter of weeks, nothing showed up but a very very tiny pleural effusion on the right lung, which could not be tapped. I took contract work in CO... and would be gone for 3 months and after I left things quickly went down hill. Finally, we returned to the source of the problem the lungs... after putting every organ under the microscope and found that the tiny pleural effusion was now covering the entire right lung. They drained the fluid and yes, it was malignant... mom didn't even make it a year before the cancer had returned. I quit my job and returned home -- my mom's oncologist placed her on Tarceva because she said she didn't know how to treat something she could not see, there was no evidence of disease and we had gone up and down the body with a fine tooth comb -- but I can confirm, my mom wouldn't have lasted too much longer, she had lost 20 lbs and was very sick. As for the Tarceva, which I had to force her to take because she was at the give up stage, worked within 12 hours... the sickness, nausea disappeared just like that... of course now, we have to deal with the side effects and she complains, but I keep reminding her of how it was just a few weeks ago.

Soooo... I'm the reader in the family. I feel like I'm carrying a ton of bricks on my back, because I'm pretty sure I know a lot more than what I've told my mother about what she's facing, but I don't want her to give up, especially since the Tarceva has worked to make her feel a ton better, now I hope it's working to hold the cancer at bay, so she'll remain NED and works long enough for me to 'get her house in order' and when I say that I mean... supercharge her immune system and get her in the best shape to kill what doesn't belong...

I've been doing a lot of catchup ... I treated my mom's cancer, as well as my sisters, who has/had Stage III/triple neg breast cancer(she's in her second year of remission) like a bad cold. I would have to say they have done the same until this point. There are lessons to be learned here... and I pray that I have not learned them too late and I hope the family will except the changes that we have to make. I've now become the executive chef and cook for three households.

First, I wish we had tested the tumor they removed for drug sensitivity, because what we got from the oncologist was a good guess. The guess didn't pan out. If we had to make the decision to take chemo or not take chemo again, I personally would take the chemo if the pleura was involved(even though it didn't work in our case), if no pleura involvement I would skip the chemo OR possibly opt for something like Tarceva as a first line treatment for a few months and pair that with an incredible change in lifestyle. All in all, lifestyle, lifestyle, lifestyle... That's what I think is most important, after the chemo, we went back to all the bad eating habits and lounging around and stuff that we had been doing for years -- when I can't help but think if we had made major changes in diet, exercise, attitude... months ago, we could have at least held what was there off longer. My single piece of advice is, don't go ahead with business as usual, make the changes that your body needs, RIGHT NOW! No doctor seems to tell you that, they say oh no need to change... you're cured -- in the end, it certainly can't hurt, I think no matter what happens, it can only help.

Good luck, I sure wish we had the moments back that you're contemplating now -- but I think it will all work out for the best for all parties involved.

By Sharonc9
Posted August 3, 2009 at 10:00 pm
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I, too, was diagnosed with NSCLC stage 1-A...and had a right upper lobectomy. I opted not to have the chemo. My surgeon was confident he removed it all. My oncologist helped me way the benefits and drawbacks...the increased odds that I would be alive if I went through chemo was only 4% at that time. I think with 4 years NED my odds of survival have increased and are pretty high. There are no guarantees! I have a friend who was 8 years NED who was diagnosed again with lung cancer recently. She had chemo when she had stage 1B NSCLC. At any rate, I'm glad I did not have chemo & believe it was the right choice. I am active and healthy...healthier than I was before I got cancer. Of course, I smoked then and no longer do so I think that has helped my lungs. I also do a lot of aerobic exercise and the more I do, the better I feel and the better I breathe.

Blessings.
Sharon

By tezzasgirl
Posted August 3, 2009 at 10:42 pm
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Hi,
My husband and I Know how you are feeling..some Five months and four rounds of chemo later we are still frightened about the future.
My husband was diagnosed march 09 with a 6cm poorly differientiated adeno carcinoma which the onc said was stage 1b,He also told us the fact that the tumour was 6cm and was poorly differientated the chances of it returning were high.
SO despite yours being 1a find out if it is poorly differientiated or not.I am sure your prognosis is great
But I am not normally a negative person and I am petrified about our future...even though the stats tell me I should not be.....
.best wishes..all the literature I have read says no chemo for stage 1a.

By stage1
Posted August 4, 2009 at 12:07 am
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Good luck to you and your husband. I appreciate your reply. My cells were also poorly differientiated but my doctors ( and I have many) seem to think I am going to be ok. I go back to the oncologist in October for my 6 mo follow up and testing. I pray every day that I will be ok.

God Bless

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