Once stage IV always stage IV?

Bonnielv that's my understanding, BUT... Many women with stage IV mets live a long time. There are even women that I've talked too who HAD stage IV and have been in remission for many, many years. Once you're stage IV it's treated like a chronic illness. I'm stable right now, which means that the mets are there, but they aren't growing and aren't getting any smaller. I think I speak for every woman here when I say that stage IV isn't a club that we want to be in, but that it's not a death sentence either. God is able, Stephanie

Once dx they say it is a condition you will have for life.  I am seeing more and more people becoming NED for longer periods of time.  Although you may show no signs of cancer they feel there are micro cells somewhere in your body that may or may not develop into tumors at some point in time.  The longest person I know of that is still NED is a poster here named Kathy and she has been NED for 14 years now.

Hi, can I ask you, how did they find stage IV, from stage 1 originally with no nodes.  I'm just curious, because I find most of the doctors brush my cancer off. I had stage 1    six years ago, and now I had dcis, and a small microinvasion (so again stage 1), yet they just keep saying You'll be fine. You won't die from this. They lead one to believe that if it's caught this early, nothing bad will happen. I've since had a double mast, obviously, no radiation, had that the first time, but that's it.  They sent me on my merry way.  You'll be fine.  Maybe I'm scaring myself , reading too much.  Best to you, Randi

Hi, Thanks for answering LuAnn.  I feel okay, and hopefully I am fine. It just makes me nervous that the docs all pooh pooh everything that is early stage, and yet there are plenty of stories of those who had "nothing" like me, and now they have "something".  It's just a real scary world to enter, and no matter how early stage you are, your life is never quite the same anymore, always wondering , is it coming back for me. Randi

Oz,

I had femara, arimidex, faslodex, aromacin all with zolodex to put me in menopause. After all stopped working I had my overies removed (leproscopically) and that gave me some more time without chemo.
-luckywife

Dear mittmott,

After my first go round I was told I didn't need to see surgeon or onc anymore, just PCP.  He had a schedule, such as blood work, chest xray, mammo every 6 mos. for two years then yearly, etc.

He did not though do Tumor markers except CA125, which I wish he had done the whole panel.

Nothing, ever showed up on any of my mammos. I was just celebrating my 5 years of NED, when seeing a surgeon for another matter, he found the scalane lymph node swollen, on to stage IV.

I think any doctor you see can order any blood work, scans etc. I think it is very important for us to listen to our bodies and if you feel something is wrong, insist on tests. My only symptom something was up was that I was more tired than usual, had to take naps.  I did tell my PCP about it, but all blood work, mammo and chest xray were good so no further testing was done.

We, must be our own doctor first.

Best to all,

Di

Hi , Thanks Lucy and Di.  I went to this onc, for a second opinion, 6 yrs ago.  She's in Sloan Kettering (supposed to be the best place). She said everything was done right, and saw me for 2 more yrs, once a year.  She took me off tamoxifin, said it wasn't for me, since I got my first cancer after being on it for a year.  I was on it because they had found lcis, a year before. I then did not see an onc for 3 yrs, just my breast surgeon every 3 or 4 months. I asked for an mri, this past summer, and he gave me a script, and it showed something. Nothing on my mammo showing up.  Did the biopsy thing, comes back dcis.  Decided to do everything in sloan kettering this time, called this onc, that I saw there in the past, and she recommended the surgeon from there.  Did a bilateral, and surgeon was surprised, there was a small microinvasion again. saw the onc a few weeks later, and first her fellow comes in and says, oh, it's nothing, it's dcis. got it all.  I said, check your records again, it's also a small microinvasion.  He said, yea, but it's so small, i didn't count that.  I couldn't believe, it, but I ignored him, because, he isn't the doctor anyway.  She comes in and says that I have a great outlook, caught everything so early, and don't need chemo, and therefore, don't need to see her anymore.  I was so happy to hear that, I didn't question anything, but now it's nagging me.  I'm reading too many stories of people with stage 1, who are now stage 4, and I feel that the fact that I had 2 cancers stage 1 in 6 yrs tells me something isn't right, and that this cancer wants to get me.  I'm seeing my surgeon next month, and I'm going to do the question route, and see what she says.  As long as I know I'll be watched carefully, I don't care which doc it is.  This is scary stuff... Randi