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Our Mother was diagnosed with NSCLC IIIB 2 weeks ago


SAJR

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Our mother was diagnosed with NSCLC IIIB Squamous about two weeks ago. The tumor is located in her medialstinal and is non-operable so they say because of the location (so close to the aeorta). She has lymphnode involvement (only a couple) but no other metastasis. She started her 6.5 weeks of radiation on 6/14/07. ONC wants to do Cisplastin or Carbo/VP16. They are unable to start Chemo right away due to fluid in the lung and elevated white count. Praying for Chemo next week based on doctors appointment. What saddens us the most is to see how sick she has been prior to being diagnosed. She lost 30 pounds, N/V, weezing, left lung collapsed, inability to eat and fatigue. Our mother is 57 years old and the ONC told her she has 24 months to live but only half the people make it that far. We are praying everyday and please keep our mother in your prayers. If anyone has any similar experiences with hope please let us know. We just want to give our mother a fighting chance.

Thanks

SAJR

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Hi SAJR;

I'm so sorry you have a reason to be here. And I'm keeping your mother in my thoughts and prayers.

take the time to browse the message boards- there IS hope! There ARE survivors whose initial dx. gave them little hope and just a short time, who are doing WELL!

Let their stories and experience inspire you and your mom. Let her know that people DO survive a lung cancer diagnosis.

Keep posting and ask many questions. We are here to help you.

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Hi, and welcome to the LCSC! We have a number of members here who themselves have (or whose loved ones have) NSCLC Squamous IIIB or IV and are doing very well on their treatments. It's a lazy Sunday morning, but some of them should be responding to you soon if they haven't already, as I'm typing rather slowly in between pancake bites. In the meantime you might want to poke around the site using the SEARCH function or browsing through some of the message threads on the NSCLC & MESOTHELIOMA forum. Be sure to read the chronological profiles at the bottom of the messages, which can be very enlightening.

...the onc told her she has 24 months to live...

A few comments. First, no doctor can know that, and if he actually said that, I wouldn't place much weight on ANYTHING that doctor said. But, in all fairness to the onc, and hopefully without offending the person who relayed that item, let me just say there's every reason to believe the doctor was misunderstood. Many doctors, unless very specifically asked, will avoid any mention of x-number of months or years because those are simply averages (or means or medians) involving a large number of patients and they know many patients (or family members) are likely to "latch on" to any such number and believe it applies directly to them. Here's a case in point:

So then there’s a question of “how much time do I have, doc?”. Some people ask, and some doctors offer this information without the question. First, we aren’t that good at predicting time lines other than when it’s appearing rather immediate, in the days to weeks range. The ability to say someone has 4 or 6 or 12 months to live is more TV movie than real life. If oncologists were that good at predicting the future, we’d be working on Wall Street. The numbers are almost always based on populations, but people aren’t statistics; there are people who fall all throughout the spectrum, some doing much worse than the general numbers, and some much better. That said, if someone asks me for a direct answer because they are trying to plan their lives, I try to give some idea of a range. I think it’s too easy to just plead ignorance and offer no information, and many people need as much information as they can get. But the idea of “the doctor said I have 10 months to live” just doesn’t make sense, and I think it’s one of the downsides of talking about statistics. If we say that there is a median survival of 10 months, hopefully explaining that this is the point where half of the population will have died and half remain alive, many patients will have the impression that they have 10 months to live. I know that some family members or nurses have relayed to me that I told a patient they had “6 weeks to live”, but that wasn’t what I had said at all. But numbers and complex ideas don’t always mix well with high stress and deep emotions...

...It’s very common for me to meet with a patient in the hospital room, and we have a discussion of the broad range of the prognosis, and it could be more, or could be less, depending on response to treatment. Then I step out of the room and start writing a note in the hospital chart, and I hear the patient get on the phone to call someone, saying that the doctor just told them they have X months to live! What??

The quote was from Dr. West, who sometimes contributes comments here but does most of his online work at his own website, onctalk.com. He is on the staff of a large cancer center in Seattle, is an acknowledged expert on lung cancer, and -- amazingly -- finds time to directly and quickly answer questions from patients and family members without stepping on the toes of their regular oncologists. You can read the entire discussion thread about "discussing prognosis" here:

http://onctalk.com/2007/05/29/discussin ... -oncology/

Best wishes and Aloha,

Ned

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SAJR,

Welcome to the site. I was diagnosed stage IIIb/IV nsclc. I was told 18 months tops. I have been in complete remission since November 2005. July 7th will be two years. So much for doctor’s predictions. I had fluid in my chest wall when I started chemo. I did not have fluid in the lung. The treatment today is a lot different than it was even a few years ago. Your mom can be treated and with a good team helping her she has a chance to beat this disease. If you have any questions just e-mail me.

Stay positive, :)

Ernie

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You will find many on this site that surpassed predictions and statistics and are doing well!! Many have already been here. Through all those numbers out the window.

Come here for hope and support. Believe in the treatment and your doctor. Don't be afraid of a second opinion if you feel you need to. Many here have!

Stay strong and have hope,

Dana

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Welcome to the site. I also was dx with IIIB Squamous almost exactly as your mom dx. I am NED after my surgery that they never thought I was going to have. I never asked how much time I had because only one person can tell you that and it is not a doctor. Please keep your hopes up. My prayers are with you.

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SAJR...

Welcome...but sorry you had to find us.

As everyone else has said...time lines don't mean anything around here! Mom was told she'd "never see a year" and lived two (and she was stage IV with brain mets at diagnosis).

There is ALWAYS hope!

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Hi SAJR,

I just wanted to let you know that there are many many people on this board who were very ill before diagnosis and treatment, but once they got into their treatment plan and radiation and/or medication started working, they turned around and started gaining weight and feeling much better.

There is hope, and I hope your mother starts seeing some positive results from treatment really, really soon.

Cindy

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  • 2 weeks later...

SAJR,

Sorry I'm a little late in responding to your post.

First - welcome

Next, My Mom also had staage III squamous cell LC. She responded very well to Carbo/VP-16.

Best wishes for similar results for your Mom.

Try not to take timelines and grim predictions to heart. My experience with my Mom is that attitude is a huge part of the battle, so keep the faith, there IS hope

Jen

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Welcome here SAJR,

Sorry to hear about you mom. But I get soooo upset when a statistic is given. As that is Bull... LC is NOT necessarily a death sentence as you will read responses from so many here who were told that.

I know how scared you are and your mom will feel better once she starts treatments. Many people on here have had her diagnosis and have beaten the odds and are doing just fine. Keep a positive attitude and make sure she does the same. This disease can be kicked in the butt.. but first she has to believe that.

We are here for you for any questions you may have. If you need support, prayers or to vent we are here. You are never alone!

Hang strong!

Maryanne

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Welcome. I know when I was first diag. NSCLC stage IIIB. I did not receive a timeline and was able to have surgery, but was freaked out by the staging. As you've already heard, you will find so many others in this community that are way beyond timelines, it's incredible. I think you will find huge support here and your mother definitely has more than a fighting chance!

You, your mother and family will be in my thoughts!

-E

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