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Steph

WATCHING AND WAITING?

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Hi everybody,

Has anyone here had the experience of "watching and waiting" before they were diagnosed and if so, how long did your doctors wait before they did a biopsy of your lung?

I have a left upper outer lobe lung nodule. Because as my pulmonologist said, "when you hear hoof-beats you are supposed to think of horses and not zebras," he has spent, in my opinion too much time ruling out other things. We have ruled out every possible infection, running the gamut of TB/HIV/Granulomas etc. I have CT/Scans every three months and the nodule is growing. The symptoms I have are the usual; coughing, pain, fatigue, shortness of breath, weight loss, sputum etc.

Can anyone here offer me up some words of wisdom? How long did you wait for a diagnosis? And what kinds of things do I need to say to my doc to light a fire under him?

Thanks,

Steph

P.S Unfortunately I'm still smoking....as the stress of not knowing is "tough" :roll:

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Hi Steph----did you go for a cat scan? How big is your nodule---ususally when very small, it would not cause your symptoms (although thta is what I have read--I am not obviously an MD

My biopsy was done right away because the tumor was big enough to get a needle biopsy of

now I get nodules and because they are small we wait to see if they grow---they ususally do not and disappear----(I get alot of inflammatory tissue) however, recently when I had enlarged lymph nodes by my operation, my surgeon went in to get a biopsy (negative thank God)

so not sure what he is waiting for---? If the Dr does not give you answers, I would go to another more agressive Dr.---lung cancer cure is so much better whne it is caught at the early stages---and if it is growing, I would not fool around---

also a pet scan helps to define it if it is still too small for a biopsy

hope everything works out for you

regards Eileen

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Dear Steph,

After an x-ray and a CT scan, my cancer was confirmed by a bronchoscopy. Then I had a PET scan in order to stage the disease. If your nodule is larger than 1cm (I believe) you should ask for a PET scan. I think you should ask the pulmonologist about getting more specific scans. I wouldn't feel comfortable about watching and waiting unless your nodule is too small to analyze. How big is the nodule?

Good luck,

Ada

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If is growing I would be concerned. Like other people said - how big was it initially and how big is it now?

Is it calcified or non-calcified - I believe non-calcified is more likely malignant, but you can search on calcification and probably find an anwer

A PET could help, if it is big enough. I'ld get another opinion from a cancer specialist

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Welcome to the board! You are among friends!!!! Good place to come for answers, encouragement, & just to vent!

In Dec. of 2002 I had all your symptoms you had plus couldn't lay on my left side as it would choke off my air. Also had pains around my stomach.no appetite! They ruled out everything to do with the stomach & bowl area, before taking a simple xray!!!!

Then Bingo! everything started happening!!! That was Jan 10th 2003. Jan 13th had biopsy & cat sscan. Jan 16th was told I had cancer and was sent to UW cancer clinic. I a few pet scan & 4 more biopsies.

Was DX Jan 23rd 2003 with stage lV NSCLC with lymth nodes around waist area.

I have had 5 treatments of chemos & 2 cat scans already!!!!!! The cancer is Shrinking!!!! :D:D

So it seems to me that they Are Dragging their heels with you!!! Thell them u want to HAVE a Biopsy so you know one way or the other!! ANd Can either start celerbrating :D or fighting :evil:

Hang in there Steph!!!

As for the smoking understand where you comming from!!! I quit a week after I was DX. I used patches tp help me. wasn't as hard as I thought it would be! Course had alot of help from my family!!!!! I had smoked for 47 yrs. Had Tried MANY!!!!!!! time before to quit & never succeed :cry:

So I was very surprise I was able quit this time! But this time I had all stress taken from me!!!! Before I lead a VERY active & stressful life!!!!

I told my family that I think this was GODS way of telling me to slow down & SMELL the ROSES!!

keep us posted to what is happening with you!!!!!!

keep you in my prayers & thoughts!

((((hugs))))

Estelle

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Listen, if you are getting CT scans every three months and it is growing , you are telling us it has been at least 3 months maybe 6 months and they are telling you it is GROWING . Do you have some very serious lung disease that would make the doctor hesitate to treat you? Like severe COPD? IF NOT please tell him to biopsy or go to some one else. Early detection is the key to fighting this disease. When you say it is GROWING that makes it very serious to me. I would have to know what I was dealing with. Good Luck. Keep us posted.

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Wow! You guys are amazing! :) Thanks so much for the fast responses!

The size of my nodule is a little over 1cm and it is still growing. John, you mentioned something about Non-calicified and calcified. My CT/scan reports say that it is non-calcified. I guess that is not a good sign?

I really appreciate all the encouragement. It feels really good to be able to talk with people who know and understand what I am feeling.

My doctor has been really dragging his heels, because the testing has been going on for a year now. :( I guess you could say that I am a little nervous and I'm trying really hard to quit smoking.

I've been reading all of your success stories and that has helped alot.

You've inspired me to get a second opinion, nothing wrong with my doc personality wise, but my health and life need to be the most important thing right now. I'm not very good at speaking up for myself, which is quite an understatement. I also have an HMO, so I always wonder if that has any bearing on the delay. Anyone else have any thoughts on that?

Thanks so much!

Steph

P.S I forgot to mention I don't have COPD

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Steph,

Welcome to the site, you will receive a lot of love and support here. Sorry you had a need that brings you here.

I know it is hard sometimes to go against what has been your personality your whole life, but you need to stand up and fight for your life. Because that is exactly what this could mean. If you have been going through diagnosis for a year, I am assuming it is a slow growing lung cancer, but it is always better to catch any cancer earlier rather than later.

My husband went in for a routine check-up and a two month follow up after pneumonia. The chest x-ray showed the same shadow as his pneumonia diagnosis x-rays. That was on a Thursday, the following Monday he was in for a CT scan. That Wednesday we were told it was most likely cancer. Friday he had surgery to biopsy a mass in his neck. Then the next Wednesday we received the official diagnosis. We went from nothing to diagnosis and treatment scheduling in a little under two weeks. And to me, that seemed like an eternity of waiting. I can't imagine waiting a year.

If your doctor doesn't have a fire under his butt... then you need a new doctor.

You are in my prayers,

Carleen

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I agree with your doc on the "think horses not zebras" thing. However, in your case, I think he is confused as to which is which. I think unfortunately that lung cancer is the horse here and all those other things are the zebras. Get another opinion and get a PET Scan, please.

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I would get a second opinion ASAP. If your Doctor's approach is correct, a second opinion won't hurt anything. If he's wrong, waiting and watching may not be the right way to go.

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Thanks for the condolences

Force the hmo to get you to a cancer specialist - ASAP

Good luck. At least it is still relatively small, but it is almost criminal waiting so long. It will help if you quit smoking.

quiting smoking will let you tolerate the different treatments better.

Best of luck

God Bless

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I agree with getting a second opinion. I am not much for waiting around when it comes to cancer, either for myself or a loved one. I think the hardest time is between diagnosis for cancer and starting the treatment. Get going! Don

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