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Stage 1, grade 1 and pre-menopausal

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  • MTnester
    MTnester Member Posts: 147
    edited April 2012

    Bern-I started Tamoxifen last September. I started Zoladex injections in October as a trial run for the hysterectomy, and then in February I had a complete hysterectomy - nothing left but the memories LOL. I don't see my MO until July but based on what I've learned, I'm fairly certain she will change my meds at that time.

  • Annicemd
    Annicemd Member Posts: 292
    edited April 2012

    Hi mtnester, your mo will change you to an AI now you have no ovaries.

    Homer, the tamoxifen is aimed at blocking estrogen supply to any rogue BC cells that didn't get taken care of by BMX - I.e. the so called micro mets that are characteristic of BC. So tamox is generally used in premenopausal women even after BMX

    Dreaming it's so great to have you on the site as a long term survivor. You give us all hope and strength.

    I am having my exchange to squishes at end of month, can't wait!



  • SpringFever2011
    SpringFever2011 Member Posts: 5
    edited April 2012

    I had the BART test subsequent to negative BRCA 1/2 .... Thankfully it, too, was neg. the reasons I chose to do the test -(ins only covered BRACA 1/2) ... I was DXed a year ago @39 y/o (young .....) ...I'm Jewish ....eastern European descent ....paternal grandmother died of ovarian/uterin cancer ...... ..all these are characteristics that are common to BRACA pos dx. I did not mind paying the $600 ... Because at the time .... It felt reassuring .....now, 9 months later ..... I'm glad I did it ......but ....I believe that there are probably many other genetic



    I currently get Lupron injection every three months...... (which I just dread .... Yes, it's a giant needle ....but it's tolerable. My issue with it is ....hours ..after the injection ... My entire body feels like its is ridden with arthritis ...everything hurts .....after the last 2 injections .... I literally spent 3-4 days in bed ...and miserable!! I'm do for my third shot the beginning of May ...and I'm already dreading it. I am going to ask my oncologist for at least 4 days worth of a strong pain killer. ... Otherwise ... I don't want the shot!!!!



    I'm a very strong person ... And very few things really get to me .... However .... Going from being very premenopausal .....to sudden chemically induced menopause has been THE HARDEST part of my journey through breast cancer ...... Adjusting to NO estrogen ....is a battle in of itself!!



    Frankly .....I'm not sure which is more frightening .... Being on these drugs for the next 5-10yrs .....or the possibility of a recurrence ....



  • LuvLulu07
    LuvLulu07 Member Posts: 596
    edited April 2012

    SpringFever2011    Thanks for the info on BART.  This is a test that was recommended for me, although I have no family history of cancer.  I am thinking that knowledge is power, for the sake of my children. 

    So sorry you're having trouble with Lupron. I bet it's a huge adjustment to go through this at 39. Hope that the pain meds help.   

  • sj29
    sj29 Member Posts: 14
    edited April 2012

    So I am glad I found this thread. I am 26 years old DX in January with stage 1, 1.4 cm, 100% ER positive, HER2-, grade 2, 0/3 nodes. After much consideration, I decided to do Tamox with Zoladex to wipe out my estrogen production. I am going into week 5 of Tamox which has just made me tired so I can tolerate that. I got my first Zoladex injection 6 days ago and am SO NERVOUS on what to expect. I know the first 8 days it is slowly absorbed into your system so I am just waiting for this weekend basically.

     My big fear now reading all this is having children after this treatment. Hoping to God this does the trick, I am newly married and we would like to have children some day. From what I read and research, it is safe to have children after cancer, but does anyone have any experience with children after???

  • LovesChristmas-Barb
    LovesChristmas-Barb Member Posts: 504
    edited April 2012

    sjensen29...I don't have any personal experience, but I do know someone who had a baby after her treatment was over and she and her daughter are doing well. I also recently read about a woman who became pregnant while she was taking  tamoxifen.Complete surprise! That was three years ago and she and her little girl are doing great! She and her husband already had two sons and were thrilled with their surprise baby daughter...

    I'm saying a prayer that all will go well with you and that you'll be able to have those children you want.

  • hawk
    hawk Member Posts: 255
    edited April 2012

    I am praying for you and sending you hugs,  sjensen. 

  • Annicemd
    Annicemd Member Posts: 292
    edited April 2012

    Sj29 there have been a few threads on pregnancy and tamoxifen/zoladex on this site so if you do a search you should find more info. I don't have much info /experience on this. You can certainly get pregnant after treatment with zoladex once your cycle returns. It's recommended that you should avoid falling pregnant while taking tamoxifen. I wish you all the best with your treatment

  • peachy49
    peachy49 Member Posts: 16
    edited April 2012

    Just an update. Had my bilateral mammo and radiologist came out and said that Im still "stable".. she said I still, at 55, have very dense breasts, and some b9 nodules (ultrasound said so).. so she wants staggered MRI/MAMMO every 6 mo still. I also had rib pain, but that xray came back negative, so all is still well, August will be 6 yrs, God willing. Praying that you are doing well-just wanted to check back with you..

    Blessings..

  • Annicemd
    Annicemd Member Posts: 292
    edited April 2012

    Peachy 6 years and stable is fantastic, thanks for the update. So good all is clear for you. You have very thorough MO if they still want 6 monthly scans 6 years out. Sounds like you are in good hands.

    Hugs

  • Kelleyod
    Kelleyod Member Posts: 125
    edited April 2012

    Peachy- congrats! 6 years and stable sounds fantastic to me! I will take it and pray for many more to come your way. . . .



  • Hils
    Hils Member Posts: 152
    edited April 2012

    Hi Annicemd - really glad you started this thread, some really good posts. I was diagnosed with DICS and possible IDC in November 2011. Had a partial mastectomy in December 2011, which proved that I had a large lump of DCIS. Unfortunately the margins were not good enough so following a MRI I underwent a unilateral mastectomy in March 2012. At this time they found another large lump of DCIS plus a 6mm lump of IDC. Since March I have been told I have ER and PR + (90%+) and Her2+, although since that time the pathology report has been changed and I am no longer Her2+ (so I think!). Been waiting five weeks to see the MO and it has been hard. I think the thing that really turned my brain and emotions upside down is the change in the pathology report. Why I have no idea, I should be happy I am no longer looking at chemo, but for me the uncertainty has just left me confused and angry.

    I was 47 years at diagnosis and pre menopausal and as regular as ever - so I guess Tamoxifen beckons. Here in NZ and in the public health system the Oncotest or equivalent is not carried out, too many dollars! Thanks for everyones support and information it really helps.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited April 2012

    Hils...I can appreciate your frustration.  Just want you to be aware that there is a flip side to your issue....Not many people are aware or discuss the 2011 ASCO meeting lecture of a small independent study of the OncotypeDX test that found an unusally HIGH false NEGATIVE HER2 outcome!  Below, I posted information on that lecture.  Clearly, the most important information that we need are solid pathology results.  Rest assured that most, if not all tumors are looked at by more than one pathologist.  And when there is a discrepency, they are often looked at by more pathologists.  Here in the States, you can request that your pathology sides be looked at at a different institution.  Johns Hopkins and MD Anderson come to mind that have great second opinion pathology labs.  Check out their websites.

    I wish you well with your MO visit.  By all means, if you are unsure, by all means ask for a second opinion or ask that your case be presented to a tumor board.  Good luck.

    High false-negative rate of HER2 qRT-PCR of the Oncotype DX test: An independent quality assurance study. 



     

    Sub-category:HER2+ Category:Breast Cancer - HER2/ER Meeting:2011 ASCO Annual Meeting Session Type and Session Title:General Poster Session, Breast Cancer - HER2/ER Abstract No:603 Citation:J Clin Oncol 29: 2011 (suppl; abstr 603) Author(s):D. J. Dabbs, M. Klein, S. Mohsin, R. R. Tubbs, R. Bhargava; Magee-Womens Hospital of the University of Pittsburgh Medical Center, Pittsburgh, PA; Riverside Methodist Hospital, Columbus, OH; Cleveland Clinic Foundation, Cleveland, OH Abstracts that were granted an exception in accordance with ASCO's Conflict of Interest Policy are designated with a caret symbol (^) here and in the printed Proceedings.Abstract DisclosuresAbstract:Background: HER2 (ERBB2) status is an important prognostic and predictive marker in breast carcinoma. In recent years, Genomic Health, Inc. (GHI), purveyors of the Oncotype DX test, have been separately reporting HER2 by reverse transcription polymerase chain reaction (RT-PCR) to oncologists. Due to lack of independent evaluation, this quality assurance study was undertaken to define the concordance rate between immunohistochemistry (IHC)/fluorescence in situ hybridization (FISH) and GHI RT-PCR HER2 assay. Methods: All cases at three participating laboratories (MWH-Magee-Womens Hospital, CC-Cleveland Clinic, RMH-Riverside Methodist Hospital) with available HER2 RT-PCR results from GHI were included in this study. All IHC positive and equivocal cases were further evaluated and classified by FISH at respective laboratories. Results: Of the total 507 MWH cases, 236 CC cases, and 100 RMH cases; 99% (464/468) of MWH, 99.5% (221/222) of CC, and 100% (94/94) of RMH negative cases were also negative by GHI RT-PCR assay. However, all MWH (n=13), CC (n=8) and RMH (n=2) equivocal cases were reported as negative by GHI. Of the 26 MWH positive cases, 8 were positive and 18 were either negative or equivocal by GHI (concordance of 31%). Concordance for positive cases was 17% (1 of 6) at CC and 25% (1 of 4) at RMH. Conclusions: There is an unacceptable false-negative rate for HER2 status via Oncotype DX in this independent study. This can create confusion in decision making process for targeted treatment, and can potentially lead to mismanagement of breast cancer patients if only GHI HER2 information is used. The Oncotype DX assay for Her2 has a flawed, inconsistent methodology that is not robust, and this raises serious concern about the validity of the Oncotype DX test.  Associated Presentation(s):    1. High false-negative rate of HER2 qRT-PCR of the Oncotype DX test: An independent quality assurance study.Meeting: 2011 ASCO Annual Meeting Presenter: David J. Dabbs Session: Breast Cancer - HER2/ER (General Poster Session)
  • SelenaWolf
    SelenaWolf Member Posts: 231
    edited April 2012
    In Canada, the OncoTest is not offered and the considerations as to whether- or not a patient needs chemotherapy is based on other, measurable factors. 

    Youth is one: even if you have a small, node-negative cancer, chemotherapy is routinely offered because it increases your chances of remaining cancer-free for a longer period of time.  Women in North American have an - approximate - life expectancy of 84 years, so - if you develop a small, node-negative cancer in your thirties or forties - you have decades of time to get through NED.  Chemotherapy can tip the odds in your favour. 

    Size of your tumour is another: even if you are node-negative, if your tumour measures over 2cm, chemotherapy is routinely offered because it starts shedding cancer cells at that size and just because your nodes may be "clear", doesn't mean that the cells haven't found another way to spread.  Again, chemotherapy can tip the odds in your favour.

    Genetic counselling/testing is not routinely offered unless you have both early-onset breast cancer (breast cancer before age 40) and/or any-onset (any age) ovarian cancer in more than one first-degree relative.  Any incidences of pancreatic- and colon/rectal cancer are, also, considered.  You can request the counselling if you are anxious to have a risk assessment/management plan developed, but - unless your pathology/family medical history warrants it, i.e., strict criteria are met - you do not qualify for the test.

    At 50, I was considered "young", so I knew that chemotherapy would be on-the-table for me.  My cancer was - barely - over 2cm, so the argument for it got stronger.  The one, positive lymph node sealed the deal.  Chemotherapy it was.  Didn't want it to be so, but wanted the odds in my favour.
  • Annicemd
    Annicemd Member Posts: 292
    edited April 2012

    VR am I interpreting this correctly- if you are known to be HER2 positive the oncotype DX test is flawed. If you are HER2 negative from fish test etc then is should be ok. Is that right??

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited April 2012

    Annie... According to the small sample that they studied, the OncotypeDx test had an unusually high number of false negative HER2 results. And yes, it was verified thru fish. Not good. I know.

  • Annicemd
    Annicemd Member Posts: 292
    edited April 2012

    Hils, thanks for posting. If you are not offered chemo then ask your MO about ovarian suppression. You will have seen from this thread that many of us pre menopausal early stagers who have not "qualified" for chemox have been treated with Lupron to block estrogen. There is some evidence that the mechanism of the benefit of chemo in early stage premenopausal BC may be at least in part due to it inducing menopause. The definitive study has not yet been published but there is a strong belief that ovarian suppression or ablation is a good idea in this situation.

    Good luck

    Annice

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited April 2012

    And adding insult to injury, there is a clinical trial now recruiting patients who are HER2,+1 and +2 to receive Herception and/ or chemo... But none of us would qualify with T1, No, Stage 1, Grade1. Not sure whether this is good or bad....

  • SelenaWolf
    SelenaWolf Member Posts: 231
    edited April 2012

    I went into chemo-induced menopause by round two... and have been in menopause for seven months.  Hopefully, it's permanent...

  • SpringFever2011
    SpringFever2011 Member Posts: 5
    edited April 2012

    I am 40 .... And on the same path as Annie .....Lupron (which I just dread) and an AI. Recently ...I went to the Obgyn for a yearly visit....and they found blood in my urine .....and ruled out infection... Told me to see a urologist ..........anyone ever have this happen? Its a first for me ...thus I have no idea. I started Lupron and femera in Nov ........ I haven't made an appointment just yet .....but will. Not looking forward to adding yet another doc and appointment to my list!

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited April 2012

    I went for a routine check up and was asymptomatic. Did a urine test and it came back positive for blood. I was on Lupron and Tamoxifen. Refused antibiotic. Went back 10 days later and all was well. Mother and sister have history of kidney stones. Will see a urologist if I get a positive urine blood test again and or get fever or pain. Years ago I had an ovarian cyst pressing on my bladder that mimicked an infection. The doctors kept giving me antibiotics until a urologist gave me a sonogram and sent me back to the gyno... After he threw the antibiotic bottle in the garbage!

  • Hils
    Hils Member Posts: 152
    edited April 2012
    Thanks everyone I will take your words of wisdom with me to the MO on Friday, before that I need to psych myself up for my first TE fill, which I know is nothing. But after my last visit when they did nothing I am slightly worried as the registrar I sawask ed me where the port was for the fill?!? Hopefully I will not see them this time Smile
  • Annicemd
    Annicemd Member Posts: 292
    edited April 2012

    I think I was her2 2+ but fish test negative and thought that there was an ocean of difference in receptor numbers between 2+ and fish +ive at least thats what they told me when all the decisions were being made. So thats worrying to hear VR and Esp as they are not doing the study in stage one. There is just so much we still don't know!

  • LuvLulu07
    LuvLulu07 Member Posts: 596
    edited April 2012

    Annicemd   I'm with you on the Her2 - at first was diagnosed as positive with a 3+, was then told that this particular lab "always comes back positive for Her2".  Then tested negative with oncotype dx, and then negative with FISH.  Onc mentioned that it would be very unusual to have a Grade 1 come back positive for Her2.   Her2+ and Grade 1 combo does exist though??

  • thesuiteshoppe
    thesuiteshoppe Member Posts: 3
    edited April 2012

    Hello all.  I'm very new to this thread, but I have a few questions.  I finished chemo in mid- Dec and I haven't had a period since.  Am I in menopause?  Is this a good thing?  I've been told it's bad because it ages me quickly (I'm 44).  I'm on Tamoxifen and I have PCOS, I need to lose some weight (30-40 lbs) for reconstructive surgery, but between PCOS, Seroquel (a drug), Tamoxifen and horrific hunger, I'm not losing a pound!  I workout 2 hours a day, 5-6 days a week.  Any advice?  I'm on Metformin and Topomax to help counteract the PCOS and weight, to no avail. I'm terrified that in menopause I'm stuck at this weight permanently.  Thanks.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited April 2012

     Below is the current best way to determine HER2 status:

    Testing for HER2

    Although several methods for HER2 testing have been developed, approximately 20% of current HER2 testing may be inaccurate. Therefore, the American Society of Clinical Oncology (ASCO) and the College of American Pathologists (CAP) have recommended guidelines in HER2 testing to ensure accuracy.

    Breast cancer specimens should initially undergo HER2 testing by a validated immunohistochemistry (IHC) assay (ie, HercepTest, Dako, Glostrup, Denmark) for HER2 protein expression.[1] The scoring method for HER2 expression is based on the cell membrane staining pattern and is as follows:

    • 3+: Positive HER2 expression - Uniform intense membrane staining of more than 30% of invasive tumor cells
    • 2+: Equivocal for HER2 protein expression - Complete membrane staining that is either nonuniform or weak in intensity but has circumferential distribution in at least 10% of cells
    • 0 or 1+: Negative for HER2 protein expression

    Breast cancer specimens with equivocal IHC should undergo validation using a HER2 gene amplification method, such as fluorescence in situ hybridization (FISH). More centers are relying on FISH alone for determining HER2 status.

    In general, FISH testing is thought to be more reliable than IHC, but it is more expensive. Equivocal IHC results can be seen in 15% of invasive breast cancers, whereas equivocal HER2 FISH results are seen in less than 3% of invasive breast cancer specimens and those that had previously been considered HER2 positive. Discordant results (IHC 3+/FISH negative or IHC less than 3+/FISH positive) have been observed in approximately 4% of specimens. Currently, no data support excluding this group from treatment with trastuzumab.

    Newer methodologies for establishing HER2 status, including reverse transcriptase-polymerase chain reaction (RT-PCR) and chromogenic in situ hybridization (CISH), have not yet been validated. The interpretation for HER2 FISH testing (HER2/CEP17 ratio and gene copy number) is given below:

    • Positive HER2 amplification: FISH ratio is greater than 2.2 or HER2 gene copy is greater than 6.0
    • Equivocal HER2 amplification: FISH ratio of 1.8-2.2 or HER2 gene copy of 4.0-6.0
    • Negative HER2 amplification: FISH ratio is less than 1.8 or HER2 gene copy of less than 4.0
  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited April 2012

    http://clinicaltrials.gov/ct2/show/NCT01275677?term=her2-low&rank=1

    Above is the link for the clinical trial that I was referring to that is comparing chemo alone VS chemo and Herceptin in a sample population of "low risk" breast cancer patients.  What is interesting about this study is the parameters of the study DO NOT include patients like us who are T1, N0 Grade 1, Stage 1 with excellent prognostics.  However, interestingly, HER2 +1 and +2 are included in the study.... 

    DISEASE CHARACTERISTICS:

    • The tumor must be unilateral invasive adenocarcinoma of the breast on histologic examination
    • All of the following staging criteria (according to the 7th edition of the AJCC Cancer Staging Manual) must be met:

      • By pathologic evaluation, primary tumor must be pT1-3
      • By pathologic evaluation, ipsilateral nodes must be pN0, pN1 (pN1mi, pN1a, pN1b, pN1c), pN2a, pN2b, pN3a, or pN3b

        • If pN0, one of the following criteria must be met:

          • pT2 and estrogen receptor (ER) negative and progesterone receptor (PgR) negative
          • pT2 and ER positive (PgR status may be positive or negative) and either grade 3 histology or Oncotype DX® Recurrence Score of ≥ 25
          • pT3 regardless of hormone-receptor status, histologic grade, and Oncotype DX® Recurrence Score
    • No T4 tumors including inflammatory breast cancer
    • No definitive clinical or radiologic evidence of metastatic disease

      • NOTE: Chest imaging (mandatory for all patients) and other imaging (if required) must have been performed within 90 days prior to randomization
    • No synchronous or previous contralateral invasive breast cancer (patients with synchronous and/or previous contralateral DCIS or LCIS are eligible)
    • No previous ipsilateral invasive breast cancer or ipsilateral DCIS (patients with synchronous or previous ipsilateral LCIS are eligible)
    • HER2 status of the primary tumor must be evaluated prior to randomization; all testing performed must indicate that the tumor is HER2-low as defined below:

      • IHC must be performed and the IHC staining results must indicate a score of 1+ (in situ hybridization [ISH] testing is not required) or 2+ (ISH must also be performed and must indicate that the tumor is HER2-low as described below)
      • If ISH (FISH or CISH) testing is performed, test results must be as follows and IHC must be 1+ or 2+:

        • If FISH is performed, the ratio of HER2 to CEP17 must be < 2.0 or, if a ratio was not performed, the HER2 gene copy number must be < 4 per nucleus
        • If CISH is performed, the result must indicate a HER2 gene copy number of < 4 per nucleus
      • NOTE: If the IHC staining intensity is reported as a range, e.g., 0 to 1+ or 1+ to 2+, the higher intensity score in the range should be used to determine eligibility.
    • No primary tumor with any of the following HER2 testing results:

      • IHC staining intensity:

        • 0 on all evaluations of specimens
        • 3+ on evaluation of any specimen
      • ISH with a ratio of HER2 to CEP17 ≥ 2.0 on evaluation of any specimen
      • ISH result indicating HER2 gene copy number ≥ 4 per nucleus on evaluation of any specimen
    • The patient must have undergone either a total mastectomy or breast-conserving surgery (lumpectomy) (patients who have had a nipple-sparing mastectomy are eligible)

      • For patients who undergo lumpectomy, the margins of the resected specimen must be histologically free of invasive tumor and DCIS as determined by the local pathologist; if pathologic examination demonstrates tumor at the line of resection, additional operative procedures may be performed to obtain clear margins; if tumor is still present at the resected margin after re-excision(s), the patient must undergo total mastectomy to be eligible (patients with margins positive for LCIS are eligible without additional resection)
      • For patients who undergo mastectomy, margins must be free of gross residual tumor (patients with microscopic positive margins are eligible as long as post-mastectomy RT of the chest wall will be administered)
      • The interval between the last surgery for breast cancer (treatment or staging) and randomization must be no more than 84 days
    • The patient must have completed one of the procedures for evaluation of pathologic nodal status listed below:

      • Sentinel lymphadenectomy alone:

        • If pathologic nodal staging based on sentinel lymphadenectomy is pN0 or pN1b
        • If pathologic nodal staging based on sentinel lymphadenectomy is pN1mi or pN1a, the primary tumor must be T1 or T2 by pathologic evaluation and the nodal involvement must be limited to 1 or 2 positive nodes
      • Sentinel lymphadenectomy followed by removal of additional non-sentinel lymph nodes if the sentinel node (SN) is positive
      • Axillary lymphadenectomy with or without SN isolation procedures
    • The patient must have ER analysis performed on the primary tumor prior to randomization; if ER analysis is negative, then PgR analysis must also be performed (either the core biopsy or surgical resection specimen can be used for ER/PgR testing); patients with a primary tumor that is hormone receptor-positive or receptor-negative are eligible

    ----------------------------------------------------------------------------------------------------------------------------------

    Annice....You are correct, however, that presently, there is an ocean of a difference between being HER2 positive and negative.  Perhaps though, in the future, THIS study will confirm whether the ocean is as big as is currently thought to be.....The study is recruiting through 2017.  It seems like a well designed study that MIGHT get enough participants.  However, even if they do fully recruit....we won't know the results until the next decade or two.....Again, I applaud those courageous sisters who participate in clinical trials....

  • Annicemd
    Annicemd Member Posts: 292
    edited April 2012

    Thank you VR for the information. It will be a long time before light is shed on this issue then, like the ovarian suppression issue. We can choose ovarian suppression but I don't think we can push for herceptin as the data are much less clear. I still feel I am doing all I can to prevent recurrence I.e. healthy diet and lifestyle trying to reduce alcohol (not always successfully), tamoxifen, zoladex and zometa...and what will be will be.

  • Annicemd
    Annicemd Member Posts: 292
    edited April 2012

    Thesuitehoppe, your chemopause may be temporary, it's difficult to tell and very individual. Menopause is good for estrogen receptor positive BC but bad for weight management!

    Best wishes

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited April 2012

    I think we have to not lose sight of our excellent prognostics and not lose sleep over what still needs to be discovered... While enjoying a glass of wine.