Stage 4 NSCLS - 1259864

mmsmith27
Posts:1

I was diagnosed in May 2013 with NSCLS with Lymphnode involvement in Neck and Bulky Andenopathy around aoerta as well as right hilar node. Broch scope performed, FNA and core biop of neck nodes. It took 6 months to get enough sample of tissue to be tested. They kept telling me they needed 160 micrograms of tissue! why so much? Also One large institution calling is squamous and another calling it Adeno. I have 1 5mm "speculated nodule" in right lung. Other than that I am responding to abraxane/carbo 5 treatments and now just on abraxane. The "speculated nodule" hasn't changed but they are saying that is where it started.......I am very confused, I am young with two children, and responding very well - I am very confused by all this. If this started I the lung with the 5 mm nodule - wouldn't you see shrinkage there are well? All my bulky andeopathy has shrunk, hilar node, and pretracheal nodes and neck nodes all shrinking well! I am very confused and scared.

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Reply # - October 14, 2013, 09:11 AM

catdander
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Hi mmsmith, Welcome to Grace. I'm very sorry you and your young family are going through this devastating diagnosis. I think Grace will be able to help you understand what's going on and even help with treatment decisions as they arise.

It's not unusual for one area of your cancer to respond to treatment differently than other areas. However as long as it's not growing/"progressing" it's considered to be "stable" which is a good thing (no matter how much we want to see it shrink).

I'm not sure for what the tissue was being tested but there must be a certain amount of cancer present to make certain determinations, just enough to pinpoint cancer and what type or more probably molecular testing. It sounds as though there was molecular testing of the tissue? Following is a link to an explanation of molecular markers. It's an excellent overview but there has been an additional targeted drug approved for use for ALK and ROS 1, crizotinib. http://cancergrace.org/lung/2010/10/10/overview-of-molecular-markers-in…

It may be unusual but not rare that a person has both squamous and adeno nsclc present in one tumor.

Below are links to get you started with a better understanding of nsclc and to know you're not alone.
http://cancergrace.org/lung/2012/10/25/ladies-home-journal/
http://cancergrace.org/lung/2010/08/22/introduction-to-locally-advanced…
I've not read this but it may be time. It's been helpful for quite a few people, http://cancergrace.org/cancer-101/2011/01/09/emperor-of-all-maladies/
http://cancergrace.org/cancer-101/2013/01/16/progression-rate/

Don't hesitate to ask questions and search our database.
All best,
Janine
forum moderator

Reply # - October 15, 2013, 06:12 AM

marisa93
Posts: 215

I just wanted to welcome you to GRACE, it's a good place to land after your diagnosis. I'm so sorry you are going through this with young children. I wish you all the best!

Lisa

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