Stage 4 from stage 1

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PinkyTR
PinkyTR Member Posts: 13

Hello ladies!

My doctors says that my tumor is HER2+ agressive. The researchs show that stage 1 patients has 98% chance for living 5 years metastasys free disease. I've never seen anyone that become stage IV from stage I. Have you ever heard someone who became stage IV from stage I?

Thank you. Bisous :*

Comments

  • Beatmon
    Beatmon Member Posts: 1,562
    edited April 2016

    Well there must be quite a few! I am one. Stage 1 to 4 in less than 2 years. But that certainly doesn't mean that will happen to you.

    Brenda E.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited April 2016

    It an and does happen. Breast cancer does not progress stage by stage. You can go from any earlier stage to stage IV without passing through the stages in between. Hopefully, this won't happen to you!

  • labelle
    labelle Member Posts: 721
    edited April 2016

    Unfortunately, 98% is not 100%- meaning two women out of every 100 with this diagnosis will NOT live free of MBC for 5 years-that is a lot of women!

    Odds of a full recovery and never having to deal with BC again are very, very good for someone who is stage 1, but recurrences and progressions do happen.

  • wabals
    wabals Member Posts: 242
    edited April 2016

    Beatmon did you have rads and chemo the first time

  • lkc
    lkc Member Posts: 1,203
    edited April 2016

    hi there, these data is based on if you do not have chemo and Herceptin, which many stage 1 opt out of.

    Her positive disease is a sneaky bastard that lurks microscopically... Personally, I think ALL ladies with her disease should go aggressive so they have the best chance of not being visited by the beast again.

  • PinkyTR
    PinkyTR Member Posts: 13
    edited April 2016

    hi everyone :) thanks four your message. I know 98% is not 100%.. But I I've never seen anyone that become stage IV from stage I.. Brenda I know that you couldn't get the targetted treament (herceptin) or/and chemo on the first time. Is it true ? And Ikc : You are amazing

  • Denise-G
    Denise-G Member Posts: 1,777
    edited April 2016

    I've met many women that have become Stage IV from Stage 1. I write a breast cancer blog

    and have had countless women contact me. Many were under treated initially with Her2Pos.



  • PinkyTR
    PinkyTR Member Posts: 13
    edited April 2016

    Hi Denise :) can i see one of those who became stage IV from stage I on your blog?

  • Denise-G
    Denise-G Member Posts: 1,777
    edited April 2016

    PinkyTR - don't think I ever wrote specifically about that issue, but there are 185 posts, so perhaps!

  • Beatmon
    Beatmon Member Posts: 1,562
    edited April 2016

    Yes, to the question above, I did not have chemo. At the time, it was not recommended due to small idc size, two small tumors that added up to <5mm. Doc had it remeasured 2 times and sent out to another pathologist, and it went to tumor board.

    So now, looking back, of course, it was the wrong decision. Mastectomy was supposed to be more than enough. But who knew..

    Now I think just a 1 mm her 2+ is recommended for chemo...

    Brenda E

  • PinkyTR
    PinkyTR Member Posts: 13
    edited April 2016

    Thanks for your responses Denise and Brenda :). Brenda I am so sorry for your situation. My purpose was just talk to someone who got stage IV from stage I HER2+. I guess I will never find one. :). I hug you all.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited April 2016

    Pinky, Brenda IS the person you are looking for. She was stage 1 HER+ and is now stage IV.

    I was NED for 5 years from stage 1 but now am stage IV at 7 years out. I'm HER- though, but I even know of DCIS ladies that progress to stage IV. It's all a crapshoot....

  • VioletKali
    VioletKali Member Posts: 243
    edited April 2016

    PinkyTR-

    If breast cancer recurs, a woman is considered stage 4. A woman with stage 1 breast cancer can have a recurrence, Her2+ is very aggressive.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited April 2016

    kayb, I have a local recurrence and am considered stage IV but NOT metastatic. I will be on treatment for life as per my MO.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited April 2016

    Here's a general explanation from the Mayo Clinic:

    A cancer recurrence means it's the same cancer coming back after some period of time. In rare cases, you may be diagnosed with a new cancer that's completely unrelated to your first cancer. This is referred to as a second primary cancer.

    Where does cancer recur?

    Your cancer can recur in the same place it was originally located, or it can migrate to other parts of your body. Recurrence is divided into three categories:

    • Local recurrence. This means the cancer reappears in the same place it was first found or very close by. The cancer hasn't spread to the lymph nodes or other parts of the body.
    • Regional recurrence. A regional recurrence occurs in the lymph nodes and tissue located in the vicinity of your original cancer.
    • Distant recurrence. This refers to cancer that has spread (metastasized) to areas farther away from where your cancer was first located.
  • PinkyTR
    PinkyTR Member Posts: 13
    edited April 2016

    Barbe1958, on your first dx 2 node positive out of five and you are stage IB..Why??? And you are not her2+.. And i know Breanda stage IV from stage I but she say her can not treated.. Violet Her2+ is very agresive but herceptin is good treated. Last researches shows that. Am I wrong?

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited April 2016

    Pinky, years ago they graded/staged us differently. At first I was just stage I and then they added the B because of the micromets to nodes. I know I'm not HER2+, I mentioned that above. Herceptin has really helped those HER- gals.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited April 2016

    Pretty confused, then kay. All my friends here on bco.org that did NOT first present as Stage IV and yet died of breast cancer weren't really stage IV at death? That kind of goes against everything I've known about breast cancer for the past 7 years of my life. Before I got breast cancer I didn't understand the staging. My oncologist considers me stage IV and I have to be on chemo for life. Would I have to be on chemo for life as a stage IIIC?

    Going over now to post this question on the stage IV forum to see what they say.

  • Mommato3
    Mommato3 Member Posts: 633
    edited April 2016

    Barbe, Here's what I understand about staging. You are considered Stage IV if you are initially diagnosed with distant mets. If you start out at Stage 1, 2, or 3 and then develop distant mets then you are considered Stage 1 (stage 2, stage 3) with mets. It really means the same thing. On this site most women show themselves as Stage IV once they become metastatic. Probably easier for everyone to understand?? Are you getting chemo or an aromatase inhibitor? They aren't the same thing. I've seen other Stage IIIc women talk about needing to take an aromatase inhibitor for life (for ER+ BC). I will say I've seen a lot of conflicting information depending on what website you read or what MO you talk to. Did that help at all??

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited April 2016

    That did help Momma, because I didn't get Tamoxifen with my first diagnosis they can use an AI which at my stage (whatever that is) is considered "chemo in pill form" as per my oncologist. When/if that stops working then I move on to an IV chemo. If I had Tamoxifen years ago I would have to go right to an IV chemo.

  • susan_02143
    susan_02143 Member Posts: 7,209
    edited April 2016

    Staging is always the first presentation stage. I am Stage II with metastatic disease on all of my reports. The term Stage IV has taken on an inaccurate life of its own on this board, which is unfortunate. AI's and chemo are two very different treatment protocols. Your oncologist is being very loose with the terminology. There are VERY few chemo-by-mouth available, and the AI's are not in that number. I am surprised that your first chemo would not be Xeloda, which is an actual chemo by mouth and can be very effective. And in fact, you should be given Faslodex before chemo since it is a much more gentle treatment, and can be very effective for a very long time. It is in a different drug class altogether.

    I don't usually bother to be so precise about the definitions of these words on this site, but I know that you are very intelligent, and might want to know that these are all different classes of drugs.

    *susan*

  • Mommato3
    Mommato3 Member Posts: 633
    edited April 2016

    Barbe, I agree with Susan. An AI and chemo are two different things. Even Tamoxifen and an AI are two different types of drugs that work in two different ways. I've seen women that start with tamoxifen and then become metastatic or have progression so they switch to an AI or the other way around. Have you considered getting a second opinion? Do you feel comfortable with what your MO has told you and your treatment plan?

  • edwards750
    edwards750 Member Posts: 3,761
    edited April 2016

    I think the definition of Stage IV depends on who you talk to. One of the ladies in my BC support group at church was DX as Stage 2 ILC and just found out the cancer has metasized to her hip. Her ONC at the Cleveland Clinic said she is now Stage IV and is taking a chemo pill for life. She is the second person I've talk to lately who is taking the chemo pill.

    Diane

  • HappyHammer
    HappyHammer Member Posts: 1,247
    edited April 2016

    Not sure where to post this but this thread seems like a good place to start. Please point me in a different direction if needed. I have recently found a little "lump" on each forearm and one on the inside of the upper arm on my "good" side. Last Herceptin infusion is May 5 and will meet with MO same day. Also, scheduled for first mammo since dx. No pain- nothing...should I be worried?

  • funthing42
    funthing42 Member Posts: 418
    edited April 2016

    Yep.

    BC x 4. Stage 1 . No breast and TCH then hmmm skin mets. No nodes all times except now Feb 2016.

    2015 Rads again. Skin mets gone.

    TM up. Pet Now opposite side lymph involvement.

    Does any one know if a tiny skin nodule is in the skin

    Can cause opposite side lymph involvement. Nodule in skin in sternum.


  • barbe1958
    barbe1958 Member Posts: 19,757
    edited April 2016

    kayb, I'm glad you mentioned all this!! I see now that we DO use Stage IV loosely around here and in real life, too. People get it. To say your cancer came back, most people would think "Okay, you "beat it" the first time and you'll do it again."

    As for AI's, I'm on Arimidex not Tamoxifen. I use the term "chemo pill" as that is what my oncologist used. I'm not too much into splitting hairs here. I was just told I'd be on "something" for the rest of my life. I know that as time goes on that "something" will become IV chemo. It's difficult to explain to people why I'm not going in for chemo. If I'd had Ariminidex the first time, then I'd be on an IV chemo now. They are trying Arimidex as a first line and I'm quite fine with that.

  • PinkyTR
    PinkyTR Member Posts: 13
    edited April 2016

    Happy Hammer, I wait for your results on May 5th and I hope there will not be any bad results. Funthing42, why do you think these things happened? Do you have any guess? Kayb I think I wrote the topic correctly, am I wrong?


  • barbe1958
    barbe1958 Member Posts: 19,757
    edited April 2016

    I asked my oncologist today what stage I am. He said I was "technically" stage IV now.

  • PinkyTR
    PinkyTR Member Posts: 13
    edited April 2016

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