nslc or not?

[with2kidsnow]

Hi everyone,

I'm glad I found this site. My uncle was recently "diagnosed" with non-small cell lung cancer. His dr. said he would undergo chemotherapy and if it "worked" he was given 2 years.

The problem is the dr. called back the day after giving the family this prognosis to tell them that he didn't have the actaul pathology report in front of him when he talked to them and that the report said only "atypical cells" so he now could not officially say cancer.

The family is so overwhelmed and confused. He did say that he was still 98% sure it was cancer due to the x-rays and his 17-year experience, just that he couldn't affirm it yet. Uncle is set to do another bronchoscopy, and lots of body scans to get to the bottom of this.

But if he can't say now that it is cancer, then why did he say to my cousin (after telling her about the confusion) that uncle is stage IIIB?

We are all so sad and confused. Anyone with confirmed stage IIIB who can give us some positive experiences would be greatly appreciated?

[gerbil runner]

Hi and welcome (though sorry you need to be here).

My mom has sclc, not nsclc, but diagnosis was not easy for her, either. The met to her pancreas closed down her bile duct, which is what sent her to the dr. Her dr. and the first onc. who saw her believed she had pancreatic cancer (which her sister had died of 10 years ago). If you think lc is grim, look at the stats for pancreatic cancer - moves fairly fast, hard to diagnose early and not very responsive to chemo.

A pulmonary dr. who was consulted voiced his opinion that it might be lc spread to the pancreas, rather than pancreatic cancer spread to the lung. The first bronchoscopy resulted in my mother needing a ventilator due to bleeding - but no diagnosis other than "atypical cells".

Four days later, after transferring to a bigger hospital, another bronchoscopy also failed to give a dx. Oh, and then there were the tests on sputum which were inconclusive as well (which were done before the first bronchoscopy).

Finally, a CT-guided needle biopsy of the pancreas confirmed SCLC. It took 19 days in the hospital to get the dx.

Sometimes the samples just don't give enough info. And a correct dx is crucial. If the first onc. had stopped at the pancreatic cancer dx, my mother would not have been given proper treatment, and probably would not be here today.

As hard as it is, try to be patient while the dr. figures out the true diagnosis. Hopefully there will be good treatment options to go with it!

Oh, and BTW, ignore the stats. Only God knows your uncle's future.

[Mr Ry]

First I would find another oncologist. My dx took two days. I had a windowed ct scan. Then a CT-guided needle biopsy of my lung. all before my dx. No one ever gave me a time limit. I did not ask for one. I know I have out lived my family doctor's expectations. I will have survived 2 years June 13th. Everyone is different on how you react to treatments. I have always hated time limits. Too much stress. Good luck to your uncle in his battle against this monster.

John

[niececola]

Hi and welcome. I am sorry that your family is going through this. My mom's LC cancer diagnosis took months and looking back, it is still very frustrating that she suffered like she did, it seems so obvious to me now that the docs should have checked for LC a lot sooner, but they didn't. And sometimes I wish docs would just report the facts, but most feel compelled to share their assumptions before the test results come back. It can be very upsetting to a family, b/c I know I just want to hear the facts and not what the doc is assuming to be happening with my mom. But what is important in the long run, like Jen said above, is getting an accurate and complete dx. This website is a wonderful resource for information, there are many stories to read here and when it comes to gathering some very real and practical information, this website is invaluable. It is important to be very proactive in your uncle's care and to learn as much as you can. There is much hope and there are lots of options, so while the first few days and weeks of the initial dx are very upsetting and your emotions are all over the place, it will get easier and then you can get onto a plan of attack.

Lastly, don't listen any stats re: how much time you uncle has. The stats are outdated and no one knows how much time we have left. Best to use your energy on getting a game plan in place, eating right and staying positive.

Good Luck,

Denise

[john]

Stage IIIB is when there is

1) any size tumor and the N3 (lymph node around the clavical is positive for cancer cells or any lymph nodes on the opposite side of the tumor.

OR

2) T4N0 - the tumor in the lung has invaded the are around the heart but no evidence of lymph node involvement.

T4N0 may be resectable based on the article below.

http://www.cancer.org/docroot/CRI/conte ... ?sitearea=

http://www.guideline.gov/summary/summar ... oc_id=3648

http://www.findarticles.com/cf_dls/m098 ... html?term=

[DeanCarl]

Hi. I'm sorry you had to seek us out, but VERY glad you found us.

First of and foremost .... take that 2 year "prognosis" and dump it in the toilet! If you stick around here anytime at all you're going to find a LOT of folks who are alive and doing well LONG after the "time limit" they were first given. Your Uncle is NOT a statistic.

My dx took about 20 days from the first time the word "cancer" was used until they had it nailed as to what type and stage. Like you're Uncle I had a pulminary doc with a lot of experience who read my first CT scans and he pretty much nailed it from that. He told me then it was probably cancer, probably squamous cell, and probably stage IIIA. Broncoscopy, bone scane and whatall proved him right on.

The diagnostic phase of treating this disease can be the worst part sometimes. It's like you've been caught up in a hurricane and you have no control over where you're going or where you're going to land.

But hang in there. Once you have a complete and accurate dx you (or actually your Uncle) WILL have some control over what happens.

Here's a link to the National Cancer Intitute's page on lung cancer. Lot's of good information there (but a caveat .... don't get wrapped up in the statistics!)

http://www.cancer.gov/cancer_informatio ... type/lung/

Dean