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Stage 1, grade 1 and pre-menopausal

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Comments

  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited October 2013


    The Metastatic Breast Cancer Network website has information on the 30% figure. It's just an educated guess, because data isn't collected on metastatic recurrences.


    So many statistics are compiled and distributed, they can be confusing. For instance, 98% of women with early stage BC are alive after 5 years. But that doesn't mean they won't have a recurrence. Even if they have had chemo, double mastectomies or other serious treatments, or have been pronounced "cured," women with early stage can still have a recurrence or metastases.


    http://mbcn.org/education/category/incidence-and-incidence-rates/


    http://mbcn.org/education/category/survival-rates/


    When I look at the number of posts on these discussion boards entitled "In Shock" or "Not Again," the 30% rate seems about right. Not that my observations are scientific. I've heard a related statistic that chemo only works in 30% of patients. So does that mean that 70% of all chemo patients will have their cancer return?

  • Annicemd
    Annicemd Member Posts: 292
    edited October 2013


    Rosem if you could not tolerate the Lupron then it is the right thing to stop Lupron, as you have also had chemo my hunch is that your cycles will not return. Even if they do you will have been estrogen deficient whilst on the Lupron and you will probably get a premature menopause because of th chemo so the treatment you have had will almost certainly help you in the long term even if your cycles do return.


    There are many conflicting small scale studies about whether Lupron and other ovarian supressions are appropriate/worthwhile/needed in stage I and II BC, the SOFT study is the only one powered to definitively answer the question which is why the ladies on is thread eagerly await it's publication!


    Hope that helps answer your question

  • rozem
    rozem Member Posts: 749
    edited October 2013


    annicemd - my periods returned after a year of chemopause which is why they decided to use the Lupron. I am hoping the 9mons of shots were "the last straw" and these periods wont return. If the SOFT studies show a benefit I would rather just remove them instead of having this chemical in my body (which it did not react well too)I am going to ask my onc on the 31st if she has heard when these studies would be released. I will keep this thread on my favorites for sure since you guys are so knowledgeable on this subject

  • SusansGarden
    SusansGarden Member Posts: 754
    edited October 2013


    Thanks for the info TarheelMichelle.


    According to the first link it states (my bold):


    "Quote from The Oncologist Journal “Prognostic and Predictive Factors in Early-Stage Breast Cancer” (May 2004) “The poor outcome with the Halstedian approach, as well as the observation that 20%-30% of node-negative patients ultimately develop metastatic disease, led to the currently held micrometastatic paradigm. This paradigm asserts that many patients with early-stage disease have distant micrometastatic disease present at the time of diagnosis, putting them at risk for the later development of overt metastatic disease."


    So "node negative" would clearly mean Stage I. So it is saying that 20-30% of stage ONE bc patients will metastasize? That's not what the oncs or cancer math tell you. Though looking at cancermath it only gives you stats for 15 year survival. It's not telling you your percentage of never having BC again.


    Maybe it isn't misleading? I can't believe they don't track how many original BC's end up metastasizing? I would think that would be valuable information. If the 20-30% really is true, I think it should be more publicized. Instead of this widely advertised stat of 98% survival rate. (when it's only for 5 years). Shoot, I think a lot of Stage IV bc's are outliving 5 years. I want to know the true stats of how many bc's come back no matter what the hell we do for treatment.

  • violet_1
    violet_1 Member Posts: 335
    edited October 2013


    Susan,


    I hear ya! I don't think ANYONE REALLY KNOWS. We can be Stage 1 and not know that we have mets somewhere &/or as in my case, we can have 1 side lymph node status UNKNOWN. We aren't normally ever scanned, either.


    Crazy Crap Shoot...


    Reading The Emporer of All Maladies book has made me




    realize HOW LONG it TAKES ideas for new treatments to garner attention...for trials to even get approved, started, and finally completed (all can take decades!). Then, the laborious process of MAYBE getting a seemingly hopeful new treatment/drug approved for use & into the market. The advent of















    Ingenious ADVERTIZING to sway the public sector is also quite interesting.










    *HISTORY* of CANCER TREATMENT is frightening, maddening, & fascinating all at once. The myriad political components are eye-opening...;)









    Violet




















  • SusansGarden
    SusansGarden Member Posts: 754
    edited October 2013


    I hear ya, Violet. Frightening, maddening and fascinating. You said exactly how I feel this damn cancer.

  • Annicemd
    Annicemd Member Posts: 292
    edited October 2013


    Susan, 20-30% of stage I BC are likely to metastasise with surgical treatment alone. With adjuvant treatment survival rates have improved to levels we expect- 90%+. Cancer math and adjuvant online will give a survival stat with and without tamoxifen, my stats were around 83% 10 year survival without tamoxifen and is improved to about 92% with tamoxifen. BC can return many years after original diagnosis and stage 1 often means slower growing tumours so late recurrence is a reality. 20-30 % recurrence for stage I to III combined is probably fair bearing in mind that these stats reflect women recurring now who may have been treated 5 or 10+ years ago and may not have received/been offered tamoxifen/herceptin and may have received less effective chemo regimens than are available now...

  • violet_1
    violet_1 Member Posts: 335
    edited October 2013


    Annice,


    That makes sense of the statistics. ..but still so iffy huh?


    V

  • violet_1
    violet_1 Member Posts: 335
    edited October 2013


    Annice,


    That makes sense of the statistics. ..but still so iffy huh?


    V

  • SusansGarden
    SusansGarden Member Posts: 754
    edited October 2013


    Annicemd ~ what I'm reading now is that it is saying that AFTER the adjuvant therapy (hormonal and/or chemo) the stat is 20-30% metastasize for no nodal involvement.


    I too thought that our treatment choices brought those stats down to about 8-10% (but that's only looking out 10 year survival) So you are speculating that the these stats are outdated due to new treatments? Tamoxifen has been around forever. But I suppose Herceptin is fairly new?

  • Ridley
    Ridley Member Posts: 95
    edited October 2013
    Hi all -- I've been reading this thread with interest. I'm technically in this category based on the size of my largest tumour, but had multi-focal disesase, so my med onc encouraged me to focus on biology of the cancer and not on staging (given most stats are still by staging, that was interesting but not necessarily that helpful.)

    Anyhow, I was wondering if the Genomic folks are compiling any recurrence risk stats - they are producing lots of reports these days, although I don't think that they would know evidence of recurrences. Would be interesting to see the predictions they are making.

    My onc suggested I would be on tamox for 10 years, but we'll see what the SOFT trial shows and what progress is made in other areas during the next 10 years.

    Take care all,

    Ridley
  • SusansGarden
    SusansGarden Member Posts: 754
    edited October 2013


    Ridley, I'm curious as to why your onc is recommending 10 years for tamoxifen. I've talked to my onc about this and he didn't want to say anything definitive since I've still got 2 1/2 years to go...but he said they , as a rule, aren't recommending the 10 years for stage 1 right now.

  • Ridley
    Ridley Member Posts: 95
    edited October 2013


    Not sure why 10 years, but i had read some news clips on 10 years vs 5 so I was not surprised. I'll ask the next time I see him. I know he thought the multifocal aspect increased risk of recurrence, so maybe that's why. I figured that by the time 5 years rolls around, there may be new research to consider.

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited October 2013
    SusansGarden,

    Trastuzumab is relatively new in that it has only been approved for adjuvant use for less than 10 years, and has not been trialed for use w/o chemo except for a trial running for bc patients over age 65 and trials offering it as neoadjuvant treatment followed by chemo.

    The recurrence rate is I think a reflection of the estimate that only around 20% of early stage bc patients actually benefit from the use of chemotherapy (but that is an old number and that is for the entire group of bc and not all bc get trastuzumab, only somewhere between 1/4 to 1/3 are HER2 positive.
  • SusansGarden
    SusansGarden Member Posts: 754
    edited October 2013


    I agree, I think the HER2 treatment could be a huge factor since it is so recent. If 1/4 to 1/3 are HER2 and the newer treatments even stopped 1/2 from metastasizing..that would greatly effect the statistics.

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited October 2013


    The problem with trastuzumab, however, as I underestand it, is that while it does help initially for about 50% of those who receive it and reduces early recurrence, eventually it generally does not continue to provide protection. But discuss that with a reliable medical provider or check the studies to see if that is accurate.

  • levassel
    levassel Member Posts: 254
    edited October 2013


    You seem to have the same as me....did you have to choose lumpectomy and rad or mastectomy? I do and I'm struggling with what to choose.

  • violet_1
    violet_1 Member Posts: 335
    edited October 2013

    Morning All!

    See Resource section here. .posted 2013 CANCER RESEARCH PROGRESS REPORT ..

    FREE...SO GOOD!

    VI

  • RunFree16
    RunFree16 Member Posts: 649
    edited November 2013


    Violet--Can you give more information or a direct link to the story you were looking at? I pasted the whole phrase into the search box and got 45 stories. Or just summarize it?

  • violet_1
    violet_1 Member Posts: 335
    edited November 2013

    Go cancerprogressreport.org...link feature not working for me..see 2 other places I posted here ..one in our RESOURCE SECTION...LINK IS THERE. 

    VIOLET

  • violet_1
    violet_1 Member Posts: 335
    edited November 2013

    In our Recommend Your Resources forum. ..;)

     Vi

  • RunFree16
    RunFree16 Member Posts: 649
    edited November 2013


    Violet, I see now that I misunderstood your original post! I thought there was some breaking news that made you feel suddenly free of cancer or cancer worry, so it was odd that I couldn't find the news. I pasted in the URL you listed and I couldn't see what the big hoopla was there either. I feel silly for saying this, but I never saw the "Recommend your resources" forum on the forum list or any general section labeled "Resources." I tried putting those into a search window and they didn't get me there either. However, I was able to get to it by clicking on your name and looking at your recent posts, and then I understood that it's cancer progress report that we can get a copy of by clicking on "Get a copy" on that website and sending an email. I sent away for my free copy of the report, so thanks. Hope it's full of cheer.

  • violet_1
    violet_1 Member Posts: 335
    edited November 2013

    RunFree:

    I'm so sorry for the all of the confusion!! I do think the RESOURCE SECTION should be front and center, personally, at the TOP of all of the choices. But I have 2 problems: I can't seem to link from my smartphone to this site and my links when I use my laptop only work occasionally. However, my laptop is older and pretty screwed up.

    I, personally, did not even know about the Resources section for a long time; maybe I can ask the MODERATORS about changing this possibly...;) That's the reason I posted this information in three threads-- because I was so afraid people wouldn't see it. But I am glad you finally found the link and the Report is truly worth getting.

    I have several other free patient resource type things to post, but I'm just thinking people won't see them if I post them in RESOURCES. 

    Any Moderators reading this? Comments? 

    Thanks!

    Violet



  • RunFree16
    RunFree16 Member Posts: 649
    edited November 2013


    Thanks Violet! I looked in Breast Cancer in the News on the main page, but I didn't find it there. I still don't know how to find the Resources section, which makes it less of a resource.

  • violet_1
    violet_1 Member Posts: 335
    edited November 2013

    Run,

    It's quite buried. Go to ALL TOPICS, scroll waaaaay down, it's after fun/games/humor...SHARE YOUR OWN RESOURCES is its own Forum...

    BUT, YES, IT NEEDS TO BE MOVED FRONT & CENTER...TO THE TOP...;)

    I need to ask about changing it...;)

    Vi

  • violet_1
    violet_1 Member Posts: 335
    edited November 2013

    And,

    It shouldn't fall under the Grey Heading Section: "Day to Day Matters"

    I'll work on this/ask the kindly Mods...just SUPER busy next few days planning Mum's 75th SURPRISE  B-Day party! !!!!

    Vi


  • RunFree16
    RunFree16 Member Posts: 649
    edited November 2013


    Surprise 75th birthday parties should always take priority! Have fun! Thanks for telling me that "Recommend Your Resources" is under "Day to Day Matters." I see it now, and your post. Slippery!

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited November 2013

    levassel, I had lumpectomy with SNB, CAFx6, IMRT rads, and 1 3/4 yrs tamoxifen  (if you were asking me?)

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited November 2013

    Adjuvant treatment of premenopausal women with endocrine-responsive early breast cancer: Design of the TEXT and SOFT trials.

    Authors

    Regan MM, et al. Show all

    Regan MM, Pagani O, Fleming GF, Walley BA, Price KN, Rabaglio M, Maibach R, Ruepp B, Coates AS, Goldhirsch A, Colleoni M, Gelber RD, Francis PA; International Breast Cancer Study Group (IBCSG) and the SOFT and TEXT Investigators.

    Journal

    Breast. 2013 Dec;22(6):1094-100. doi: 10.1016/j.breast.2013.08.009. Epub 2013 Oct 2.

    Affiliation

    International Breast Cancer Study Group Statistical Center, Dana-Farber Cancer Institute, Boston, MA, USA; Harvard Medical School, Boston, MA, USA. Electronic address: mregan@jimmy.harvard.edu.

    Abstract

    OBJECTIVES: In 2003 the International Breast Cancer Study Group (IBCSG) initiated the TEXT and SOFT randomized phase III trials to answer two questions concerning adjuvant treatment for premenopausal women with endocrine-responsive early breast cancer: 1-What is the role of aromatase inhibitors (AI) for women treated with ovarian function suppression (OFS)? 2-What is the role of OFS for women who remain premenopausal and are treated with tamoxifen?

    METHODS: TEXT randomized patients to receive exemestane or tamoxifen with OFS. SOFT randomized patients to receive exemestane with OFS, tamoxifen with OFS, or tamoxifen alone. Treatment was for 5 years from randomization.

    RESULTS: TEXT and SOFT successfully met their enrollment goals in 2011. The 5738 enrolled women had lower-risk disease and lower observed disease-free survival (DFS) event rates than anticipated. Consequently, 7 and 13 additional years of follow-up for TEXT and SOFT, respectively, were required to reach the targeted DFS events (median follow-up about 10.5 and 15 years). To provide timely answers, protocol amendments in 2011 specified analyses based on chronological time and median follow-up. To assess the AI question, exemestane + OFS versus tamoxifen + OFS, a combined analysis of TEXT and SOFT became the primary analysis (n = 4717). The OFS question became the primary analysis from SOFT, assessing the unique comparison of tamoxifen + OFS versus tamoxifen alone (n = 2045). The first reports are anticipated in mid- and late-2014.

    CONCLUSIONS: We present the original designs of TEXT and SOFT and adaptations to ensure timely answers to two questions concerning optimal adjuvant endocrine treatment for premenopausal women with endocrine-responsive breast cancer. Trial Registration TEXT: Clinicaltrials.govNCT00066703 SOFT: Clinicaltrials.govNCT00066690.

    Copyright © 2013 Elsevier Ltd. All rights reserved.

    PMID

    24095609 [PubMed - in process]

    http://www.thebreastonline.com/article/S0960-9776(13)00243-9/abstract

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited November 2013

    "The 5738 enrolled women had lower-risk disease and lower observed disease-free survival (DFS) event rates than anticipated. Consequently, 7 and 13 additional years of follow-up for TEXT and SOFT, respectively, were required to reach the targeted DFS events (median follow-up about 10.5 and 15 years)."


    It appears that there were FEWER recurrences....so the researchers EXTENDED the closing date for primary collection of data....to mid 2014 or end of 2014.


    So...for now...with this tidbit of information...the good news is that there were fewer recurrences than anticipated...The bad news is that we MIGHT not see statistically significant information for several more years (as my oncologist had stated to me).  AND we might not see the preliminary results until sometime in 2015!