Stage 1-recurrance percentage % risk?

2

Comments

  • L2girl
    L2girl Member Posts: 113
    edited November 2014

    I was oncotype 15 in the worst of the two tumors, for a score of 10% recurrence rate in 10 years, after 5 years of tamoxifen, (but I think now my MO will be doing 10 years?)  I asked the MO what my risk would have been without the tamoxifen, and he said 20%. I also opted not to do chemo, because it would have only helped my chances by 2% or so, and the risks outweighed the benefits for me. Another interesting thing, I asked the NP if rads reduced the recurrence rate even more, but she said it was already figured into the oncotype score, it was assumed that if you had lumpectomy, you also had rads. 

    Also, I sometimes worry if the rate of recurrence is actually higher, because I had micromets in one node, and the oncotype is for node negative if premenopausal. Also, because I had synchronous bilateral BC, I worry about that, too. But my MO said they just go by the worse of the two sides, and that is your prognosis. Anyway, I also exercise a lot and eat healthy, and have lost weight, just as extra assurance! I can't wait for a time when the worry gets less. It has been just over a year.

  • Stenokim
    Stenokim Member Posts: 172
    edited November 2014

    l2, I also had micromets in one node.  My mo said it was tiny amount, other 11 removed were clean.  My chemo benefit was 1%, so no way for me.  I know the oncotype said for node negative, but if you read deeper into it, they do say it's applicable for three or less positive nodes, that's what website says  anyway.  I'm closing in on my year cancerversary.  I have moved on and enjoy life, but have to admit it creeps in my mind occasionally, especially if I have a weird pain somewhere, that "oh I hope it's not cancer" thought pops up.  

  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited November 2014

    Nichole,

    I am going to give you my best advice (not said in A snotty way) believe in the 5% and try you best not to think about cancer if you can. Realize there is nothing beside exercising and eating right after your treatment is over. I spent so much time looking at stats and numbers after round 1 that I regret that time. I wasted it. I don't regret my time at BC.org just that I wouldn't look up stats. I am one of the unlucky who after 5 years my stage 1 came back in a piece of leftover breast tissue after a double. The odds of that happening are SOOOO LOW.

    So I often tell people do the treatment know that you did the best that you could and once you are done go live life :). I come here learn about new drugs and make friends that get it.


    ((Hugs)).


  • lyzzysmom
    lyzzysmom Member Posts: 654
    edited November 2014

    Painterwoman and Proudtospin, I am in Southern new England and find it easier to keep to a regular program if I go to the gym (although it may be back to the recumbent bike and DVDs in the basement if it gets too snowy) Where I go there are people of all ages, shapes and sizes, MANY in their 50s, 60s and 70s. They also offer physical therapy and individual training and some low impact classes. There are some who have physical challenges or disabilities so its definitely worth thinking about and looking into a gym to see what they may offer regardless of fitness level. I am nearly 60 and find the people at the gym so friendly and helpful.

  • eleanor53
    eleanor53 Member Posts: 3
    edited November 2014

    Mine is stage 1 with an oncotype Dx score of 23 (intermediate). My lymph nodes were negative, and there is a chance of 12 - 15% recurrence with hormone therapy alone. I am concerned about two things. One is that I've had a mastectomy September 23rd, and I am wondering how many days are allowed to go by without having treatment of some sort. Today makes 50 days without treatment since my surgery, but I need some time  to find the best treatment possible.  I don't know if chemo AND hormone therapy is a good way to go in that I've read that adding chemo to hormone therapy will only make a difference by 1 - 2 percent, but my doctor recommends it because of my age (53 is described as young today). If that's the case, it's really not worth it to go through the side effects. I'd rather try hormone therapy, and good old-fashion diet and exercise. So at this point I'm wavering between hormone therapy alone or chemo AND hormone therapy. Quite frankly I'm afraid of the side effects in that I would like to keep working through the treatments. I work with students (Teacher Assistant - 7th graders), and I would like to avoid infections. Any suggestions or personal experiences?

  • holly961
    holly961 Member Posts: 3
    edited November 2014

    I had a lumpectomy 19 years ago. Stage 1.  I had 18 years of good mammograms.  This year however, I was diagnosed with Stage 1 in the same breast I had the lumpectomy.  After 18 years I thought I was home free.  Just had a mastectomy. 

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited November 2014

    Holly - that really sucks. So sorry.

  • angelia50
    angelia50 Member Posts: 381
    edited November 2014

    Holly, that is scary for all of us but I'm thankful it was still stage 1 when you found the new one. There is no good answer, I say if I had known then what I know now, I would have had double mastectomy but I could not bear the thought, but even that wouldnt' guarantee anything. I see ladies on here who had a recurrence in the tiny amount of tissue left by a mastectomy. Did you take any meds after that first cancer?

  • RobertaL
    RobertaL Member Posts: 6
    edited December 2014

    I was just diagnosed with ILC, 1.3 cm, stage 1c, grade 2, ER+
    PR+, HER negative, BC. I was supposed to have my surgery on October 21st,
    but my surgeon canceled it because I have a condition that causes nerve tumors
    to come on my skin and if I was to receive radiation, there is a high possibly
    that they could cancerous. I met with
    the Radiation Oncologist to discuss this issues and she told me she would never
    due radiation on my unless I had a lift threatening condition. I finally was
    able to have my surgery three weeks ago, a lumpectomy per surgeon's recommendation.
    I saw my Oncologist yesterday and she told me I had an 8% chance of reoccurrence
    with chemo and HRT, a 10% with just HRT, or 20% with doing nothing. I
    have decided not to do the chemo because it scares me too much. I decided I didn't want to do the OncoType test because I was told that if it came back where it indicated that chemo would help, I would have to do it. There is only a
    2% difference and it's not worth it to me. I hope I have made the right decision with not being able to do radiation.

  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited December 2014

    lower - please remember that you do not "have to" do anything. You, and only you, are in charge of this cancer journey. You are the only one living in your skin, and the decision is yours. I think too often medical professionals do not let us know that we are are own best advocates and in charge. They work for us! Sorry you are joining us here, but good luck as you navigate your care. Hugs

  • RobertaL
    RobertaL Member Posts: 6
    edited December 2014

    I have decided to do the OncoType test becuase I'm to scared that my cancer could come back.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited December 2014
    Good for your RobertaL - It is always good to get as much info as you can. Crossing my fingers you get a low score!
  • Stenokim
    Stenokim Member Posts: 172
    edited December 2014


    Roberta, good for you! More knowledge is better and I hope for a low score. Ki

  • waitingtoexhale15
    waitingtoexhale15 Member Posts: 12
    edited December 2014

    I visited dr yesterday and gor my score back. Oncotype Dx score of 16, I was told 9% chance of recurrence within 10 years 2% less with chemo, Decided on Hormone therapy only. I chose not to have the 6 rounds of chemo since the risks outweighed the benefits. My infection is still in the breast and the open wound will take another month to heal. I feel confident with such a small tumor, stage 1 and bilateral mastectomy I have taken the correct approach.

  • granny72
    granny72 Member Posts: 29
    edited December 2014

    waitingtoex: Your profile states HER2+ but it was my impression that oncotype dx is only given

    for her2 negative. Usually those of us who are HER2+ have herceptin. Just want to make sure

    you are getting what you need.

  • waitingtoexhale15
    waitingtoexhale15 Member Posts: 12
    edited December 2014

    granny72 - thanks for pointing it out. I clicked on HER2+ in error when making my profile, Thanks for the interest. :)


  • RobertaL
    RobertaL Member Posts: 6
    edited December 2014


    I got my Oncotype score back yesterday.  It was 17.  MO said no Chemo.  Started Tamoxifen yesterday too.Will know more about the percentages next Tuesday when I meet with my MO.

  • Stenokim
    Stenokim Member Posts: 172
    edited January 2015

    Roberta, yay to oncotype score. Mine at a 14 was a nine % chance of recurrence, so I'm sure yours will be similar. Doc said it can be reduced more by diet and exercise, so I am working on that. Ki

  • Professor50
    Professor50 Member Posts: 220
    edited January 2015

    I didn't pay enough attention to the recurrence rate numbers. I think the doc said something like 4 percent cut to 2 percent if I do the tamox which I am. My oncotype score was 5 so my little tumor was a real sweetie in many ways. But I don't miss him! :)

  • smo23915
    smo23915 Member Posts: 165
    edited January 2015

    Professor my stats are similar to yours. I was not able to get an oncotype because there was not enough tissue. I was wondering what size your tumor was, mine was 2mm.

    Sharon

  • Professor50
    Professor50 Member Posts: 220
    edited January 2015

    Hi Sharon, My tumor was 5 mm. So a little bigger than yours!

  • funthing42
    funthing42 Member Posts: 418
    edited January 2015

    Hi Rebertal how did you find out your about nerve tumors ?

    I never heard of this. Reason for interest. Is my tumor was 0.6 mm in 2009 . I had a Lumpectomy and Rads and has returned twice. Now after chemo b/l mastectomy it's back in my skin locally . Now I'm facing Rads again.

    Please share

  • RobertaL
    RobertaL Member Posts: 6
    edited February 2015


    Funthing42, I have a condition that is called Neurofibromatosis.  I've had it since birth.  The tumors didn't start showing up until I was a teenager.

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2015

    I had a 1.8 cm, grade 2, node negative tumor, did BMX, chemo and hormonal therapy despite a low oncotype...16. I was just diagnosed earlier this week with a recurrence despite being told how "low, low risk" I was. I think your percentage is either zero or 100...you recur or you don't. The percentages can help give you an idea, but that can be problematic when the docs do not want to check your lumps because they deem you such a low recurrence risk. No matter what your risk, be vigilant.

  • IDartist
    IDartist Member Posts: 40
    edited March 2015

    LittleMelon,


    For anyone looking to statistics re: BC recurrence, this may interest you: http://cancerguide.org/median_not_msg.html

    I had almost the same exact DX as you, Mine: IDC, <2cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-. I had a BM, started Tamoxifen, then reconstruction and a total hysterectomy. My Oncologist didn't do the Oconotype test and didn't give me a % of recurrence. She also has never suggested anything with regard to lifestyle to prevent the BC from coming back.

    At first I was a little put off by this, however, after researching women with BC, I think she was wise. She doesn't know exactly what causes BC or how to prevent its return and to suggest she does and to tell me so, would make her a liar. Lifestyle changes are good, don't get me wrong but it can't be food, exercise, etc., everything that is buzzing around. Too many women die of BC that eat healthy diets, are thin or healthy weight, overweight, exercise, never eaten meat, etc. I believe its something in our environment that causes cell mutations and stress levels.

    I also thought once I hit the 5 year mark, my chances of recurrence would go down but my Oncologist said that is true for women with other types of BC, example, triple negative BC is more likely to come back in the first 5 years. Hormone receptive BC is more likely to come back after the 5 years or later.

    I don't put much stock into the Oconotype tests, one just never knows if their cancer will come back or not. I have seen women with good chances for survival, pass on and women who surpassed statistics.

    Blessings!





  • jessica749
    jessica749 Member Posts: 429
    edited March 2015

    To be clear: My understanding is that hormonal + bc is LESS likely to come back after you pass the 5 year mark…(in other words, more women who get recurrences get them w/i the first 5 yrs not later) HOWEVER er+ bc is MORE likely to recur after 5 yrs THAN triple neg is…that said, my MO was pretty clear to me that each year, your odds of recurrence go down, period. Even if they remain higher with ER+ than with other cancers, they still go down each year….

    Contrary statistic to cite for me to look at - would like to if so.

  • Annie88
    Annie88 Member Posts: 196
    edited March 2015

    Hello everyone. I had the Oncotype score of 5, with a tumor sized 1.5. The MO told me my chance of recurrence was 5% with 5 years of Tamoxifen and 6 weeks of RT. It is nerve racking, as I can't have a mammo until Sept. Due to radiation

  • scvmom65
    scvmom65 Member Posts: 88
    edited March 2015

    I am almost 5 years out, onco score of 11, and at my last visit I asked my onco if I would be at 0% at 10 years and he said no. He said rates are different for different kinds of cancer and since mine is a hormone cancer I would always have a little bit of a reoccurence rate. But he also said almost everyone he sees past 10 years with a reoccurence with a hormone cancer has gained weight and that fat cells put more hormones in your system. So I think it depends on what kind of cancer you had.

  • jessica749
    jessica749 Member Posts: 429
    edited March 2015

    scvmom65 --- no one can go down to 0% risk~~~!!!! We are human after all. eVeryone, including the most healthy, least susceptible (whatever that is) has SOME risk.

    I once asked my onc "when does…when does…when does…" and given the context of the conversation at the time, my MO completed my thought: "When does the risk go down to that of a normal, never-had breast cancer woman? After 20 years." said MO.


  • triciabc
    triciabc Member Posts: 1
    edited March 2015

    I've been told it is dependent on whether you have a mastectomy or not and then the percentage can be as high as 30%. I was told incorrect information prior to my deciding to have a double mastectomy, by a gen surg doctor who should not have stated that in having a double mastectomy the odds of re-occurrence was less than 1%, as I have since learned this is incorrect. However, I believe they can not guarantee any rate. Try to not use deodorant with. Aluminum Zirconium Tetrachlorohydrex. Would like to know if any cancer clinics have done an independent study on the relation of Alumin with Breast Cancers. If not- why not?

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