Can someone explain what metastic disease means?

lisajones4 · 10-22-2009, 01:03 PM

Hi. I am so confused right now. I called my doctor to find out more information about the Neratinib Trial. One of the nurses called me back because she said that I didn't qualify because I had metastic disease. I explained that I was confused because I thought I was at stage IIIA. I had 7/12 nodes involved but it hadn't spread to any other organs. The nurse said that because I had it in my lymph nodes, it probably was in my blood stream and then considered it metastic. I finished Herceptin in February of 2007.

Can someone help me?

Becky · 10-22-2009, 01:37 PM

Dear Lisa

I suppose what needs to be determined is what the difference between metastatic disease and Stage 4 is. For example, like you, I was also node positive and nodes are not breast so... theorectically any woman with node positive disease or even just angio/lymphaic invasion has metastatic disease - cancer in nodes or vessels. However, I have always considered metastatic disease as cancer in other organs but then, the lymph system and nodes are different organs than breast.

I suppose you should call back and ask for this clarification - are they looking only for Stage 1 women without or without angiolymphatic invasion (or those Stage 1s with no invasion at all perhaps?!??)

If it is Stage 1 women, then they don't want anyone who had nodes involved and thus, they are considering positive nodes as "metastatic" (which strictly defined is true but not when the rest of the world defines metastatic (aka "mets") as distant organ involvement.

dlaxague · 10-22-2009, 01:37 PM

"I explained that I was confused because I thought I was at stage IIIA. I had 7/12 nodes involved but it hadn't spread to any other organs. The nurse said that because I had it in my lymph nodes, it probably was in my blood stream and then considered it metastic."

A NURSE said that? That's wrong, and she should know better. It's pretty universally accepted that "early" breast cancer is anything short of stage IV. Metastatic breast cancer, advanced breast cancer, and stage IV breast cancer are the same thing, and they do not describe stage IIIA.

Any breast cancer can have spread through the blood stream (including stage I), which is why they are looking for better ways to evaluate individual breast cancers. But unless those cells take up residence somewhere else (typically bones, liver, lungs), there's no way to know if they're there or not, and you don't say that the breast cancer is metastatic just because you think it "might" eventually be that. Jeeze! I hope that you talk to the onc and that he straightens out his nurse. If she didn't know for sure, she would have been much better off to say nothing.

Now, it is possible that the neratinib trial has some specifications that exclude you (like maybe they only want stage I or II). But that still doesn't mean your breast cancer is metastatic.

There is a gray area sometimes, in the language, because pathology reports will describe lymph node involvement as "metastatic to lymph node" (or something like that, using the mets word) but that is not the same as distant (stage IV) metastatic disease. I'm in a rush and hoping this makes good enough sense. I didn't want you to be fretting one second more than necessary.

Debbie, also stage IIIA (8 years ago)

StephN · 10-22-2009, 01:49 PM

Hello Lisa -

Check this link on the adjuvent Neratinib trial:

http://her2support.org/vbulletin/showthread.php?t=41301

There are stage II and III women posting there who are getting into this trial. That nurse sounds more like an aide who does not have much education. Was that person actually your onc's NURSE or someone else in the office??

lisajones4 · 10-22-2009, 01:51 PM

Thank you both so much ... I am not sure why I felt like I was kicked in the gut and panicked. I am three years and 11 months out and I still get freaked by what people say.

After a barrage of questions the nurse quickly told me that she had to call me back!

Lien · 10-22-2009, 02:31 PM

I agree with Debbie L: You do not have metastatic disease if you are stage III and being 3 yrs 11 months out is a good sign. Stupid nurse! How could she say that? She ought to be flogged!

Love

Jacqueline

hutchibk · 10-22-2009, 02:31 PM

It's always a gut wrencher when we hear description (rightly or wrongly stated) outside what we hang on to and the vernacular we choose to use. It happened to me after my 2nd recurrence/relapse/metastatic progression, etc... which were the words I was using. Then I spoke to a person qualifying patients for a research interview (not a trial, just an interview) who said that they had acquired all of their stage IV patients, but she would keep me in mind. I almost had a heart attack... I had never been described as stage IV up until then, although, indeed, I was. And this was 3.5 years ago. It took me a while to wrap my head around it, but then it dawned on me that there are at least 50 stages in my world...

I understand the emotional sensitivity all too well Lisa. And that nurse (if indeed it was a 'nurse') needs someone to unscrew her head and screw it back on straight.

lisajones4 · 10-24-2009, 05:32 AM

Thank you again everyone! I actually got a call from a different nurse apologizing for Dr. Tellez and the nurse practioner I had talked to. She told me the nurse misunderstood the doctors message and was not familiar with my case. Unfortunately I do not qualify for the trial!

Sheila · 10-24-2009, 06:18 AM

Lisa
Where are you in Chicago? I can tell you that in the past few weeks on my journey with the insurance issues and clinical trials, it depends on who you talk to, the answer you get...does your hospital/center have a clinical trials specialist, or better yet, call and talk to someone where this trial is being conducted. It can make a huge difference.

Joan M · 10-24-2009, 04:36 PM

Lisa,

It looks like you qualify for the early stage Neratinib trial, as the trial inclusion criteria says stages I through IIIC. But there may be other reasons why your doctor doesn't think you qualify. Here's the link the the trial information. You can also contact them directly.

http://www.clinicaltrials.gov/ct2/sh...ratinib&rank=3

Joan

TSund · 10-24-2009, 09:05 PM

Staged lll (A, B, or C) is called locally advanced breast cancer. It is not the same as metastatic, or stage lV breast cancer.

There are others on this board who are stage lll who have already qualified for this study. If you want to be a part of it I would investigate carefully., and perhaps get a 2nd opinion from an oncologist at a research center who is actively involved with these studies.

Best of luck!

Terri