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Will 30% of Early Stage (1-IIIA) go on to metastasize??

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  • minustwo
    minustwo Member Posts: 13,197
    edited November 2013
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    Susan: I was Stage 0 with DCIS and was seen every 6 months by both the BS and the MO. Who knows why since all nodes were clear & I was not originally tested for HER2. MRI at 18 months showed everything clear - NED.


    I was the one who found the recurrence at 23 mos & insisted on an ULS instead of just another MRI. With immediate needle biopsy and 5.5cm tumor mass, I was now Stage 2 IDC, HER2+, Ki67-75% (over 34 is high). So mad rush to chemo - full stop. Surgery after chemo found mets to 1 node, Ki67down to 55%, but one of the tumors was still substantially bigger than expected. Also SBR score 8/9 (9 out of 9 is the worst). So now I'm Stage 3b doing different chemo & thinking about whether to accept rads.


    Am I depressed - no, just chugging ahead. Am I angry - shocked that the recurrence was so quick but no point in being angry that the BC came back since we all know it's out there. But before I choose to go ahead w/rads - I do want to be able to weigh the risks vs. the rewards. So thanks for this thread even if I skipped right past Stage 1 and for listening to me venting with TMI.

  • gemini4
    gemini4 Member Posts: 320
    edited November 2013
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    hi Minus Two -- so sorry about your recurrence (or is it a new primary?). You have a great attitude, and I hope this next step of treatment for you goes as smoothly and uneventfully as possible under the circumstances. Do you mind my asking where the new tumor was, since you had a bmx? Was it removed surgically? And finally, when you said you found it yourself -- was it a palpable mass? So sorry for the questions. It seems a great number of us (myself included) felt lumps, etc, ourselves that might have otherwise gone undetected via scans!

  • SusansGarden
    SusansGarden Member Posts: 754
    edited November 2013
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    Minustwo ~ what a friggin crap shoot, huh? So they are considering this a recurrence? You obviously had a small amount of IDC somewhere before the BMX since DCIS is non invasive. How did they miss the IDC in the pathology of your breast tissue after your BMX, I wonder? Didn't the IDC have to originate in your ducts?

  • minustwo
    minustwo Member Posts: 13,197
    edited November 2013
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    gemini4 - I don't mind sharing. So many people have graciously shared w/me. Supposedly I had no breast tissue left but found a hump (yeah, not a lump) sort of a half circle bump a little smaller than 1/2 a golf ball on my upper chest below the collar bone. Doc originally suspected a migration from the implants but I have gummies so I knew that was wrong. The needle biopsy showed a cluster of IDC tumors. I had neo-adjuvent chemo and then axillary node dissection and they discovered mets to the lymph nodes - which were clear before - but they believe if there was a chest wall tumor it was zapped. It's technically not a new primary. Since it's in the same "region" I gather some docs say recurrence instead of mets. So maybe this is "micromets"? Lots more to learn - as always.

  • lago
    lago Member Posts: 11,653
    edited November 2013
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    MinusTwo They can't get rid of all the breast tissue even with a BMX. HER2+ can be sneaky. I also believe that our microscopes still can't see the smallest of cells… our technology is good but not there yet. It seems recurrence happens most often in the 2-3 years post diagnosis. So how is the AC treating. Are you doing 4tx?


    SusansGarden I do not look like a B. I look like a full C+ or full D. Trust me I fit into 98% of all the 34D bras I try on. For me its not about fit because they all fit. I get to choose based on comfort and style… and I didn't even get high profile!

  • claire_in_seattle
    claire_in_seattle Member Posts: 2,793
    edited November 2013
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    Then again, we could all go hut skiing which is the adventure I want to try this winter. Or at least go back to the Methow Valley. I also want to do the Hog Loppet again. Hopefully, with additional strength from running, I will only be next to last this year.


    I just handed off the cycling club membership....YIPPIE!!!....and worked in a run around Green Lake. No fair Susan, sending us that rain from the other side of the Sound. Actually a glorious autumnal day otherwise.


    The lady I handed off the membership director role to is also a BC survivor....had a terrible time post radiation. WHY....because she went skiing on the last day to celebrate being done and tore her ACL!!


    She treated me to a really decadent hot chocolate....which I buried under a mountain of whipped cream!!! - Claire

  • SusansGarden
    SusansGarden Member Posts: 754
    edited November 2013
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    Thanks for sharing your experience Minustwo. I guess that is a good example as to why they follow us so closely the first couple of years no matter what stage since BC can be such a sneaky beast. The docs have always told me they do the physical exam because it will be "really obvious" to feel if there is a recurrence (after a BMX).


    Have the docs given any insight as to how the IDC was missed since you were originally diagnosed with DCIS? Was there micro invasion before?


    I'm sorry the statistics weren't on your side but I see you are tackling it head on (what else can we do, right?) and I'm crossing my fingers and toes that this is the last you will have to deal with this crap. :)

  • SusansGarden
    SusansGarden Member Posts: 754
    edited November 2013
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    Claire ~ Sorry for sending the rain ;). That reminds me - I'm in a trail running group (called Dirty Girls :) and we currently have a friendly competition going for the next three months. It's designed to motivate you to continue running outside during this season. You get extra "points" the worse the weather is and the colder it is...and if you go out in the dark. It's been a hoot. Everyone is "excited" when they get in an early morning cold, dark run in the rain. And you get extra points for running through puddles. So now I'm happy to see it's going to be raining during my scheduled run. Brilliant idea! You should check out their "sister group" in Seattle. LINK I joined the Gig Harbor group last Feb and am having so much fun and have made some amazing friends!

  • minustwo
    minustwo Member Posts: 13,197
    edited November 2013
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    Susan: There was no IDC with 4 original biopsy sites or numerous test sites from original surgery path report. Two serial nodes on both sides clear at original surgery as well as clear margins. No micro invasion with original surgery. PET/CT and MRI's both showed NED for 18 months. The BS was totally surprised & horrified. She & I both thought if there was a possibility of something coming back it would have been on the other side since that's where the biggest tumor was & where she had the smallest margins. I guess it's just the luck of the draw that one of those sneaky buggers escaped.

  • jessica749
    jessica749 Member Posts: 50
    edited November 2013
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    I don't think I'll ever "move on" from it. I suppose one day (if I carry on 'healthy') I will stop taking tamoxifen, and with that, I will end the annual/semi annual visits to the oncologist (or the MO's nurse practitioner, who, so long as I am 'fine', I don't mind seeing so as to allow my wonderful, much-in-demand-MO tend to other new patients and the larger world of bc…a sentiment others have shared above).


    I don't think the fear or knowledge of possible recurrence will ever leave me. It doesn't keep me up at night, or paralyze me, it just is. I never want to be complacent, and can't imagine ever just forgetting about this part of my life. Cancer has affected many people in my family. It is never far from my thoughts, unfortunately. Visiting this website is symptomatic of that, I feel. (The idea that it is a part of my life, or never far from it). I find it is helpful to share experiences, thoughts, and questions, and to learn new information.

  • Allagashmaggie
    Allagashmaggie Member Posts: 66
    edited December 2013
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    It has been a long time since I have posted but it never fails, as I get closer to these 6 month followup appointments, I come to B O C like it is my safety net.

    I wish I could say that a day DOES go by without the thought of my bc but I am not there yet.  I am not terribly worried but at the same time I feel that because I do feel so well and appear to be handling arimidex with minimal side effects, that the other shoe will drop and take me by surprise.  I don't want to become complacent.  

    However, I keep in mind that my oncologist told me I treated my cancer very aggressively and I know I have done all I could with chemo and radiation and now hormone therapy.  I do need to step up my exercise even though my lifestyle keeps me on the move.  

    I do come to this site from time to time because it is part of my support system and is full of information straight from those who know.  Thanks to all of you.  By the way, what does NED mean?   Good luck everyone and happy holidays.

    Allagashmaggie







  • BayouBabe
    BayouBabe Member Posts: 1,467
    edited December 2013
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    NED = No Evidence of Disease

  • Allagashmaggie
    Allagashmaggie Member Posts: 66
    edited December 2013
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    Thanks BayouBabe. 

  • Allagashmaggie
    Allagashmaggie Member Posts: 66
    edited December 2013
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    Thanks BayouBabe. 

  • Shell-Seeker
    Shell-Seeker Member Posts: 2
    edited December 2013
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    I am scheduled for port removal Dec. 17 and has really debated this.

    I know we cant have a crystal ball but if Im gonna have reoccurance, I wouldnt remove port.

    With that said, I decided if I do than I will just get another port because that will be the least of my problems.

    It's funny because the chemo nurses tell me just leave it and the doc says get it out if you want.

    I have noticed once you are done with treatment, you are just kind of left alone if your stage 1.

    I was at my 3 month check up last week and I told my onc how fatigued I was and was sleeping way too much, and he said wow, I wish I could sleep like that. your blood work looks ok so we will see you in 3 months.

    Apparently he ordered 3 chest x-rays which no one ever told me about so I never got one.

    Does blood work even tell much because from what I read it doesnt.

    I was stage 1A, DX oct.-2011 I found the lump (just under 2cm) (earlier mamo missed it)

    The problem was it was aggresive, grade 3 hormone neg and Her2 pos.

    Lympho vascular invasion.

    My scans were clear.

    From what I have read this pathology mix can have a bad outcome but then you read Stage 1 has small chance of reoccurance.

    Then how come so many stage1 do reoccure.

    I would like to know if there is a page here that asks how many stage 1's are back?

    I guess I would just like an idea of my chance of this as everyone I know seems to think im cured, no worries.

    I dont dwell and I trust the dear Lord regardless but I would like some clear answers because I read so many condradicting articles.

    I would like to know how many stage 1 Breast cancers reoccured this year.

    I personally have had around 5 friends die of cancer this year.

    Whats the deal?

    My friend who is a nurse for my surgeon says they are DX more than ever.

  • lago
    lago Member Posts: 11,653
    edited December 2013
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    Shell-Seeker my onc wants her patients to keep their port for 2 years because that's when most of us recur. My port went in Oct.4 2010. Came out Nov. 2012. I'm glad I kept it in for 2 years.

  • ruthbru
    ruthbru Member Posts: 47,246
    edited December 2013
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    I had tons of trouble with my port, and very happily got it out two weeks after my last chemo.

  • farmerlucy
    farmerlucy Member Posts: 596
    edited December 2013
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    Shell-Seeker - I've adopted the attitude that I have done everything I can to prevent recurrence, it is out of my hands, so I may as well relax and enjoy the ride. If it comes back it does, but there is no reason to allow it to steal another minute from my life now. Do I think about it? Yep. Do I worry about it? Not really. When I feel myself going down the bunny trail of anxiety, I stop and tell myself to do the math. My risk of seeing BC again is waaaaay lower than the 50% risk my GC gave me pre-mx.

    Maybe the port is a reminder for you. I just had my nips tattooed. Now sometimes when I look in the mirror I forget they are not the real thing. It feels good to have it slip my mind every now and again.

  • [Deleted User]
    [Deleted User] Member Posts: 126
    edited December 2013
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    I thought it interesting that in one late stage support group that I attend the women were discussing this figure and saying to one another someone should tell the stage 1 people that a number of them will have recurrences. Such an odd feeling sitting there with a recurrence which brought me to late stage, 3.75 as I understand it, when I started at stage 0.

  • jessica749
    jessica749 Member Posts: 50
    edited December 2013
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    I am so guilty of hysteria. So I'm looking at the original post again, as it's on my 'favorites', and it popped up to my attention.


    I see that the Komen item referenced refers to "UP TO 30%". That's not '30%'. It's a rough estimate of "up to".


    Also, 'early stage' as others pointed out includes stage 1, 2, 3 up to 3A. Yet the heading on this thread misstates that crucial info, instead, a la the NYPost or the Nat Enquirer (two papers that surely have their place, and I read, mind you) the thread EXAGGERATEDLY states "30% of Stage ONE" will go on to metastasize? Catchy, attention grabbing headline, but that's NOT what the Komen item states.

  • minustwo
    minustwo Member Posts: 13,197
    edited December 2013
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    Weighing in - I like Lago's timeline. I'll keep my port after I finish the now 2nd round of chemo for recurrent cancer w/in 2 years from Stage 0 - DCIS w/clear margins & nodes after BMX. Shell Seeker - there are so many new things in the works for HER2+ I'll plan to wait awhile. More new research is supposed to come out at the San Antonio Breast Conference this month by the guy who developed Herceptin. All that said - if it really impacts your image & keeps you from moving ahead, that's part of the equation and it's not hard to put in a new port later.

  • schoolcounselor
    schoolcounselor Member Posts: 229
    edited December 2013
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    minus 2. I hope you don't mind me asking. With a BMX how did they find the reoccurrence?

  • minustwo
    minustwo Member Posts: 13,197
    edited December 2013
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    SC - I went in for my 2 year NED physical (no evidence of disease) and had a small swelling under my collar bone. MO's first guess was migration from one of my implants, but I have gummies so that was out. He wanted an MRI but I opted to start with ULS - which led to immediate biopsy - which let to MRI & PET/CT & chemo & surgery, then more chemo with rads to come.


    I'm surely not trying to scare anyone. Just pointing out that the info that Susan posted is very important. I didn't expect it to happen to me but hey - none of us asked for this in the first place. I haven't found any point in crying over spilt milk. Not to say I haven't cried about it not being fair, or the loss of my hair, etc. but... The only way I get through it is one step at a time and with some good doses of humor and maybe learning to become a little selfish & put ourselves first sometimes.


    Edited to add - I was amazed & uplifted by the women & men at the national metastatic breast cancer conference that I attended. It really helped me

  • schoolcounselor
    schoolcounselor Member Posts: 229
    edited December 2013
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    Thank you for sharing that with me. This is real stuff we are dealing with and two years ago when I had atypical cells. MO talked about tamoxiphen and we decided against it. At the time he said I had a 1.45% of getting BC. I was 42. Here I am now, so stats mean something to me. I have also started playing the lottery. I figure I should put my new found statistical luck to good use. 😄😄

  • lago
    lago Member Posts: 11,653
    edited December 2013
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    I know at my treatment center they will not put in a new port in the same place because the risk of blood clots goes up. But there are lots of different places they can put the port including your arm, side etc.


    Also note that even if you have a BMX you can still get a new breast cancer.You are less likely because there is less breast tissue but they can't get all the breast tissue out.


    SchoolCounselor my chances of getting breast cancer at my age of diagnose is was less than 2% even with my dense breast tissue. I did have a scare 4 years ago in the same spot but every one said it was nothing…

  • gemini4
    gemini4 Member Posts: 320
    edited December 2013
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    Hi SchoolCounselor -- do you mind my asking about your chemo? I'm wondering how it was determined that you needed it given you were Stage I with clear nodes. Was it due to your OncoType score?


    Lol about the lottery! I hope you win! :-)

  • schoolcounselor
    schoolcounselor Member Posts: 229
    edited December 2013
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    Not at all, Gemini My MO wanted me to do chemo due to my age 44. I asked for the oncotype it was 12. I am also aware of the Taylor x study where they are looking at the scale again. My MO also said the study that informs the oncotype was done with primarily older women of Caucasian background and he did not feel would be a true indicator for me. I went to Sloane Kettering for a second opinion that backed up my MO. Also for me, having chemo added to reduce my chance of recurrence was important to me. It gave me an additional 3%. To a person who fell into 1.45% that's a big deal!!!

  • gemini4
    gemini4 Member Posts: 320
    edited December 2013
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    That makes sense. Looks like you're almost done with chemo, right? :-)

  • schoolcounselor
    schoolcounselor Member Posts: 229
    edited December 2013
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    Two more to go. I can see the finish line. Then exchange surgery and then tamoxiphen for 10 years and then something's else for another 10. Hmm.... Did I really say finish line.Loopy

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2013
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    Schoolcounselor...Glad you are doing well with active treatment.  Just want to clarify what you said about TailorX "...where they are looking at the scale again." 


    According to the National Cancer Institute:

    1. What is randomization
      and why is it necessary?

    2. Randomization is like flipping a coin. The treatment will be assigned by
      chance. This procedure is commonly used in clinical
      trials
      when new treatment approaches are being tested, and when there is
      uncertainty about the best treatment approach. Patients with a Recurrence Score
      of 11 to 25 will be randomly assigned to receive, or not to receive,
      chemotherapy because the benefit of chemotherapy is uncertain in this group,
      even though chemotherapy would normally be recommended for this group based upon
      standard characteristics, such as tumor pathology, traditionally used in
      clinical practice.
    1. Why is randomization not being used for all patients participating
      in this study?

      Patients who have a low Recurrence Score (10 or lower) or high Recurrence
      Score (26 or higher) will not be randomized. Patients with a low Recurrence
      Score will be assigned to receive hormonal therapy alone, and patients with a
      high Recurrence Score will be assigned to receive chemotherapy plus hormonal
      therapy. Patients in these groups are being directly assigned, rather than
      randomized, to treatment because researchers already know that chemotherapy is
      not beneficial or is very unlikely to be beneficial for those who have a low
      Recurrence Score, and is very likely to be beneficial for those who have a high
      Recurrence Score.

    http://www.cancer.gov/newscenter/qa/2006/TAILORxQandA


    _____________________________________________________________________________________________


    The reason why the Recurrence Score was lowered for the TailorX trial was because they needed to be able to include those patients who had low "11" to "low" intermediate "25" scores, so they can actually "see" where chemo becomes an effective tool.  Remember, this trial was begun because they wanted to figure out whether or not those with intermediate scores needed chemo.  By lowering the recurrence scores for the study, they will hopefully be able to better calculate exactly where the benefits of chemo outweigh the risk for the patients who have current intermediate scores.  Until that number is discovered using the TailorX trial, as of now, if a patient has a Recurrence Score below 18, the risk of chemo outweighs the benefits.   We might find out once the trial is completed that maybe fewer patients will require chemo and that will certainly be good news for those patients who presently get dreaded "intermediate" Recurrence Scores.  However presently, as you found out, the Oncotype DX score is just one tool that helps a patient decide with their physician if chemo is right for them.