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enyaw061032

NEWLY DIAGNOSED WITH NSCLC IN NOV 04 AND SURGERY

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I have been coming to this board for several weeks and reading your posts. What a wonderful group of people! I wrote to several of you for information but thought it was time to introduce myself and try to contribute more than I have.

I went to the EM after coughing up blood and after a series of tests, diagnosed with NSCLC. I had surgery to remove my center and part of my upper right lung lobes. I spent 8 days in the hospital and had a rough time of it.

I have not had any chemo or radiation yet. The surgeon, pulmonologist, and my primary care doctor all said I did not need it, but I am still worried that I might. I am in constant worry that it will come back.

I have a lot of aches and pains yet, and each time anything happens, I worry that it is cancer coming out someplace else or the one I had spreading.

I have not yet had any more scans. The doctor told me to get a chest x-ray and bring it on my next appointment, which is in March.

Barb

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Hi Barb,

Good to have you join in.We all need all the support we can get.Recent studies just coming out are suggesting it may be a good idea to have follow up chemo.However that depends on lots of different things.(stage,

type,how long after surgery,etc.).

You will probably need to wait awhile after surgery before that could be considered.I had IT come back 4 months after surgery.They told me they

had gotten it all out after removing my left lung.After undergoing chemo

and radiation I have been stable now for a year so it was worth it for me.

Good luck and keep us posted.Every time we get a pain we think it is cancer.I feel that is normal for most of us.

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Hi Barb, welcome. Are you in the USA? Am I understanding your first follow up after surgery will be an xray in March? Do you know what stage or type of Cancer you have? Please keep us informed on how you are doing. Donna G

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Hi Barb and Welcome

As said earlier you are one of the luckier ones that were caught early enough to have surgery and that you also were healthy enough for the surgery.

I'm only a month out on my surgery and still feel many of the aches and pains but I am so thankful for the results that I dare not complain.

I'm not having chemo or radiation either and that was decided with a team of doctors and myself.

Right now I am not entertaining the idea of it coming back as mine was also caught at very early stages.

My best to you and hope to see you posting often.

It's a go0d place for that support and I've got this beat attitudes to come shining through.

Kate

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Thanks to all of your wonderful, caring people. It is such a great comfort to have a place to come to to talk about our cancer, ups and down, worries, concerns, what's good or not so good. I sincerely believe that only someone who has cancer, or had cancer (cured or survivor), or who has been a caregiver that knows and UNDERSTANDS what we are going through, can relate to the anxiety. Even though my cancer has been removed surgically, I have no reason to believe that I am "cured." I think at best I can say I think and hope I am STABLE......at least for the time being. Every ache and pain, every swallow that seems hard to make, causes extreme anxiety with me right now. I can't talk to my husband or kids, because they don't want to hear it--and repeat what their father says over and over, which is YOU DO NOT HAVE CANCER.....IT'S GONE.....YOU ARE ONE OF HE LUCKY ONES, MOM, so you need to show God how grateful you are, something along those lines. Well, I do feel lucky and I am happy that my cancer was caught early enough to have surgery, but that is not a ticket to being cured.....not yet anyway. The only reason my cancer was caught fairly early was that I coughed up blood and from there went to the ER, ETC.

In fact, right now I AM VERY WORRIED. The lymph nodes on both sides of my neck are SWOLLEN, and I am having some trouble swallowing without feeling a mild pain or discomfort.

Shame on me, but thanks for listening.

Barb

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Barb,

As Don Wood has stated so often, this is the new normal. I think you become much more aware of your body and much more nervous with every little twinge and ache.

That is good news in some ways, since you will not overlook stuff and will have things checked while they are still in the early stage.

Keep us posting on those pesky lymph nodes.

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Barb,

It does sound like you are one of the lucky ones, but I understand your feelings and concerns. It sounds like you have some concerns right now due to the swollen lymph nodes in your neck. If I were you, I would go to the doctor and have that checked out , as you should whether you had cancer in the past or not. Perhaps if you find out the cause of it and get properly medicated, it will relieve your anxiety. I would suggest you not ignore any health concern, but try to think positive and enjoy your life. Participating in this group should be a real comfort to you. There are some very kind and compassionate people that can relate to how you feel and offer suggestions . Glad you are here...

God Bless,

sue

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Barb,

Welcome to the board. Hope you will get a 2nd opinion on that chemo. My doctor told me it was extra "insurance". I can totally identify with the fear, it can take over your life.

I had my surgery in July, a 1.3 cm tumor and the surgeon got it all. He said I didn't need chemo but I decided to go with it because it is slowly becoming the new standard of treatment for stage 1 lung cancer. I was so afraid that I was willing to do anything and everything to keep this stuff from coming back. I still live in fear every day but am slowly learning how to live with this new normal, cancer normal. The days of innocence and taking our health for granted are gone and we have to learn how appreciate every day, easier said than done, I know. :?

Kathy

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Barb,

So good to see you posting, even though I wish that you didn't have to be here at all of course!

Do NOT beat yourself up for worrying the way that you are. For the first 4 months or so, I couldn't even sleep through the night because of my fear. To this DAY, when I get an ache or a pain, I am convinced that the cancer is back. Say goodbye to sore throats, headaches, joint pain and stomachaches. Everything you have will be a "met" until proved otherwise, it is the way the psychological part of this disease works. As ginny said, this is good because we are always vigiliant. We just have to somehow find that line between vigilance and being neurotic...I keep stepping over it into the neurotic side still...

Some people get anxiety medication to help them through this time and I highly recommend asking your doctor for something to take the edge off if you feel that it is necessary. There is nothing wrong with asking for help. In the meantime, please get that throat looked at, it is probably a run of the mill sore throat, but even so, you probably want to get some antibiodics. I don't even mess around with colds these days, I sneeze and I am at the doctor. This would be the neurotic part kicking in :shock:

As far as chemo is involved, all I have to offer is to go with the opinion of those you trust, which is the advice people on this board gave me when I was new out of surgery. I ended up choosing not to have adjuvent chemo and with all my neurotic moments, I have never regretted not having it. I went with the doctors who I trusted, researched, made what I felt was an informed decision and didn't look back. I respect the choice of others, but know that this was the right choice for me.

Things will get easier Barb. This whole thing is such a shock to our systems, to our lives, to everything that we knew to be. You are living in an upside down world but that world will slowly start to right itself with time. It does get better and one day you will even feel lucky, just hang in there...

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Hi Barb,

I understand what your family is saying to you... they do not WANT you to have cancer and they do not WANT you to suffer. This is their denial. Let them have it. You may want to seek out some family oncology counseling groups in your area to help your family deal with their feelings of your diagnosis with this illness. The classes can be very informative and time well spent in the long run. You will need all of the support that you can muster at home. And they need support as well. Cancer has a way of bringing out the best and the worst in us.

Now is a good time to research whether or not you want to try additional treatments. A second opinion is always a good idea, when dealing with a potentially life threatening illness. You have internet access, so read as much as you can. There are newer drugs out now that do not carry the harsh side effects of the older ones. Radiation has changed for the better in that smaller doses to a more exacting field are used and sometimes treatment planned to delivery of 2X a day rather than one.

There are so many options available to learn about.

It is very normal to feel every bump and to think that the cancer is back. Three weeks ago, I was worrying on a lymph node in my neck... I don't think it was swollen to begin with, but by the time I got through with it, I think I got it up to about golf ball size!!

Come here any old time and talk about what is on your heart. WE understand. Hopefully, in time, your family will too.

Cindi o'h

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Guest gre1

Barb,

I'm kind of new here so I may not be the most knowledgeable. I will say this, you lost a pretty good amount of lung and I'm surprised that they are not at least looking at chemo. You don't mention an Oncologist in your post, do you have one? My oncologist said, and as Frank points out, that in view of recent studies he would be hard pressed not to give me chemo. I am not inferring that you treatment plan is lacking, just making sure you have consulted an oncologist. Actually 2 oncologists, medical and radiation. Oh, also have someone look at the neck nodes. Now is not the time to ingnore things.

Glenn

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hi,

welcome you lucky one! they generally won't try surgery unless it is thought there is a good chance of curative effect!

don't worry about it coming back--at least not just yet. if you had a pet scan, nothing would show for some time. so relax and take it easy--from now on.

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Hi Barb Glad you finally decided to write---

I was stage 1A and all of my Doctors, including some oncologists said I did not need chemo, that it would do more harm then good. I believe that the studies showed that there was a slight benefit for chemo with stage 1B, but not stage 1A- (I think that was also said in the "Ask the Experts" forum)--but to reassure you, perhaps you should get an oncologist's opinion.

And in the beginning, every little ache and pain, you swear the cancer is back-, this is pretty normal --it does fade with time, however, I am still nervous at scan time

regards,

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Thanks so much to each and every one of you for your posts. It means so much to have support.

I wanted to let you know the update on my neck lymph nodes being swollen. I had gum surgery and there was inflammation from it. There was an infection. I went back to the dentist this morning so he could remove some stitches in the gums and do a checkup, and when I told him about the lymph nodes, he said they were probably caused by the one area where I had infected gums. I also went to my primary care (internal medicine) doctor and had him check that and also check my left thumb, which had a swollen area that looked like a vein. He said it was a knot on my tendon, and nothing to worry about. I told him I worried about everything, and he said that was probably natural.

Thanks again, all.

Barb

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Hi Barb and WELCOME!

I'm sorry I'm so late to welcome you. This thread just slipped right by me.

It's been almost a week since this thread started. I hope that today finds you feeling better. I can't tell from your post when you had your surgery, but it sounds like it must have been recent.

I'm glad they found it early so you could have the surgery.

Please keep us regularly updated on how you're doing.

Love,

Peggy

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Sorry to be late in welcoming you, Barb, but I'm glad you're here and getting the support you need. I'm not at all surprised that you're feeling all those aches and pains; your surgery must not have been that long ago and it takes time to heal from it. Len finished radiation in November, right before Thanksgiving and it's only now that he's beginning to bounce back and feel himself again. And radiation sure wasn't as hard as surgery!

But, as everyone else has said, you should get those nodes checked out. You may have a little infection (your immune system takes some time to get itself back into shape after surgery) and antibiotics can take care of that immediately. No need to feel so down because of something that can be cleared up. And, as everyone else has said, vigilance is a good thing -- even if it feels dreadful to be worried about every little thing that comes along.

Keep on coming back!

Ellen

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THANKS TO EVERYONE..........for the wonderful support. It's the most wonderful group anyone could hope for......sort of like an army that comes to lend a hand! And I want to lend my support to each and every one of you also.

I send my greatest and most fervent hope and prayers to each of you to get stronger and we will all beat this horrible monster! We will overcome!

Barb

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