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Advice on Stave IV SCLC W/Brain Met


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Hi,

My mom was diagnosed a month ago with stage IV sclc. The tumor in her lung is large but the brain met is only 2cm and very close to the surface. They want to operate and will be doing the surgery in the next few days. They said it should be a simple sugery with little risk of damage. When you get rid of the met does your stage change? If she receives chemo for the original tumor is it possible for her to become cancer free? I understand SC responds very well to chemo. I have read some horror stories on a bunch of boards am I looking at less than a year? The way I see it is if you remove the met and then shrink the lung couldn't there be hope?

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Hi and welcome. I'm sorry that you had to find us this way. I don't have any info on brain mets, but I can say that yes, there is always hope. Don't hyperventilate like I did when I first started reading about small cell. Just focus on getting through things issue by issue and enjoying every single minute that you have with your mother. And as far as staging goes, small cell is only staged as limited or extensive. You should check out Dr.West's site called onctalk.com. He will answer all of your questions and they may have already even been addressed and you can just "catch up" by reading.

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Hi,

I am sorry you need us, but glad you found us. Please

read my husband Alan's profile and you will see, that

although this disease is a beast, it is possible to

live a good quality of life for a number of years.

I am going to assume your Mom would be considered

extensive SCLC as SCLC is either limited or Extensive.

My husband was dignosed Jan 10,2005, had mets to the

brain in July 2005 and although he has gone through

a few recurrances is still with us today, 3 years later.

Do not believe the statistics you will read on the

internet, your mom is not a statistic, she is a person full of hope.

My prayers go out to you and your mom

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Hi, welcome to the group!

I second the suggestion to visit onctalk.com. There's a wealth of information there, primarily on lung cancer, constantly updated by a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions from people like you and me. A lot of us have "dual citizenship" so to speak, and have the same usernames there as here.

As blueeye indicated, there may be some terminology confusion that you need to clear up to be sure you're getting the right information. Small cell lung cancer (SCLC) is categorized as either limited or extensive, with extensive meaning there are mets outside the chest (such as in the brain). Stages I, II, III, and IV apply only to non-small cell lung cancer (NSCLC), with stage IV meaning mets are present. So technically, and to avoid confusion, the term "stage IV" should not be used as a general synonym for metastatic lung cancer, but should be associated only with the non-small cell types (adenocarcinoma, squamous cell, or large cell).

Unless there was an error, an extensive or stage IV diagnosis would not be changed even if the mets are successfully treated or removed. The assumption is that for the mets to have arrived there in the first place, they would have had to travel in the bloodstream, and that some undetectable malignant cells could still be in the bloodstream looking for a place to land even after a course of chemo. As time passes, this becomes less and less likely, and a person's initial staging seems to become less relevant. My impression (I could be wrong) is that the staging is useful mainly during the early weeks to determine the most appropriate treatment, whether or not surgery is indicated, and to sort out insurance and Medicare issues.

Regarding your statistics/prognosis question, I've already used my daily rant allocation in response to another new member -- scroll down this thread:

http://lchelp.org/l_community/viewtopic ... &highlight

Best wishes and Aloha,

Ned

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thanks everyone. It's hard to get straight answers or seek advice from people around me as they have not gone through anything like this. I lost my dad 4 years ago to cancer and it was very quick. I'm hoping my mom can beat this but her spirits really aren't good. I just hope she gets through the brain surgery tomorrow. I have to be there in 4 hours and can't even get to sleep. I wish it was over.

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I'm so sorry your mom and your family have to go thru this. Keep asking questions, it helps you to understand and keeps the medical team on their toes too.

Please also let your mom know that I have personally met small cell lung cancer survivors who are cancer free today. Two of which were extensive stage small cell.

The statistics can be really very scary, but there are survivors and your mom can be one too.

The survivors we have here tend to "go away" and live life once they are stable or cancer free away from the message boards, so you might have to Private Message them or look up their stories in this forum and in the my story forum.

Hang onto HOPE...it is real.

My prayers for your mom's success. Please keep us posted and have a safe trip.

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Hi and Welcome-I would have answered this last night but we were @ Johns Hopkins getting some tests done on my Mom for her procedure next week.

If you read my Mom's profile below you will see she is going on 17 months and has had a recurrence but she is still fighting and going strong. I understand the fears, believe me. We live our lives now one day @ a time (that's all anyone can really do anyway)-noone knows what tomorrow holds. My Mom had a 1cm brain mass in May of last year-she got WBR and has been clear ever since. My Mom in the beginning was severely depresssed-the Dr put her on Zoloft and it has done wonders for her spirits...I highly recommend it.

I will be quite busy the next week preparing for my Mom and my whole family (dog included) to go back down to Baltimore to be treated but PM me if you need to.

Take Care

Dar

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"ztweb" I do believe they will change the staging...

When someone as cute as Jen contradicts something I've said, it gets my attention! It sent me looking for an authoritative source, and I found this from the American Joint Committee on Cancer website (www.cancerstaging.org):

"The formal "stage" of a cancer does not change over time, even if the cancer progresses. A cancer that returns or spreads is still referred to by the stage it was given when it first diagnosed. Sometimes, after a period of remission (cancer being undetectable) for certain cancers, if more treatment is planned, a doctor might restage the cancer. The same process that was done when the cancer was first diagnosed will be repeated: exams, imaging tests, biopsies, and possibly surgery to restage the cancer. If the cancer is restaged, the new stage will be recorded with a lower case "r" before the restaged designation. As previously stated, this is not done often."

So I guess each of our statements was correct but incomplete.

Aloha,

Ned

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I just wanted to add that Ned's point about no really being able to "downstage" is more or less how we approach things. I say "more or less" because the docs also want to give the patient the benefit of the doubt.

I'd say that we couldn't be as optimistic about a treated brain metastasis isn't the same as LD-SCLC, but it ay stll be feasible to treat aggressively and with curative intent. That would mean adding chest radiation along with chemo, and I would definitely give prophylactic/whole brain radiation -- SCLC has a very significant tendency to spread to the brain, and we fear that where there's one visible, there is often more that we can't see.

I've written a post on the OncTalk website about the chance for more favorable outcomes with a solitary brain met:

http://onctalk.com/?p=437

However, the majority of such cases have been in NSCLC, which has less of a tendency to early spread than SCLC. Still, I think it's fair to have some hope that this will be a better situation than multifocal metastatic disease that is, unfortunately, much more common with ED-SCLC.

-Dr. West

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