Lightning (DCIS) strikes twice.

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  • cat24
    cat24 Member Posts: 211
    edited October 2012

    Thanks for the information Beesie, I truly was not aware of this.  I was told it was to help prevent getting an invasive cancer in my other breast, since I was now considered high risk because of the extensive high grade DCIS that was found in my right breast.  With the DCIS in my left breast, I believe my doctor said it was not high grade.  I wonder if the Tamoxifen had some effect on it?  I know I don't sound very knowledgeable about this and my head is just spinning a little today - I'm nervous about seeing my plastic surgeon tomorrow, because actually seeing the doctor makes this very real.  Thanks for sharing your knowledge.

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  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited October 2012

    tamoxifen won't "turn" a grade 3 into a grade 1.  However, it will block your body from producing estrogen that helps fuel ER+ cancers.  Since you have two different grades of cancer, it is likely that you simply have two different molecular processes going on ... some women have even experienced an ER+ in one place and an ER- in another.  That said, it is rare.  Which is why ER- women generally don't take tamoxifen, even as a preventive measure for future malignacies - even though those malignacies in very rare instances could potentially be ER+.

    I am sure this is all very surreal Cat ... I am keeping you in my thoughts. 

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  • Momluke
    Momluke Member Posts: 184
    edited October 2012

    Great info Bessie!!



    So basically even when we are on Tamoxifen or Femara, being extremely proactive with mammies, MRI's and US is still absolutely necessary to catch any little "booger" that might be trying to cause havoc in our lives!



    I tell you the truth, the whole BC thing has given me a whole new education!

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  • cat24
    cat24 Member Posts: 211
    edited October 2012

    Ok, will be having surgery in the next few weeks - I should know by week end.  So, bye bye left breast, it was great knowing you.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2012

    Tamoxifen actually does not block the production of estrogen, it blocks the cell receptors.  The reason it is given mostly to pre-menopausal women is that they need the beneficial effects of estrogen production to continue, while the drug blocks the breast cell receptors.  Aromatase inhibitors do suppress estrogen production and that is why they are given to post-menopausal women, who naturally have less estrogen as a result of menopause. 

    Here is a link that explains how Tamoxifen works:

    http://www.breastcancer.org/treatment/hormonal/serms

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  • cat24
    cat24 Member Posts: 211
    edited October 2012

    Surgery is scheduled for November 15th - left mx with latissimus dorsi flap reconstruction.  I figured I went through all the trouble of having a TRAM last time - this should give me the best chance of matching better.  It's kind of weird to think that my PS matched my right to my left in January and now he will be matching the left to my right.  Before this new finding, I was scheduled to have the rest of the reconstruction on my right breast in November, but that is on hold.  I was supposed to have a mammogram on October 29 of my TRAM breast, so I called my BS and he said he wants me to go ahead with that.  I don't know why but I am fretting about that a little bit.  I guess because my luck has not been so great lately. I know the lab order is for bilateral mammo, but I will only let them do the right.  My poor left breast has been through enough.

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  • amayberrymy1
    amayberrymy1 Member Posts: 2
    edited October 2012

    I recently had a fall down the stairs which led to enough serious back pain over time (2 months) landing me in the er by ambulance because I had fallen and couldn't get back up this time. After a 2nd er trip 3 days later they did an mri and found a compression fx in my l4 vertebrae. I questioned cancer being back but the neurosurgeon didn't see that. I wasn't convinced but did as told. Went home, bedrest, walking around the house, zero exercise otherwise and the bone SHOULD heal in 6-8 weeks but I kept getting worse and a month later was in the er, this time in Boston. They too did an mri but for some reason they were able to see the tumor that in my gut, I knew was there. Two days later I had to have a major surgery (laminectomy and titanium rose and screws to support my spine). Had I continued to walk around much longer I would have ended up paralyzed because of the way the tumor and fx were pushing on my spinal nerves. 10 days later confirmed that the tumor was from a rogue cell from ny original idc that survived bother the chemo, radiation and mastectomy and hit quietly for a little while in ny spine. I realized when I was in the er at tufts med center that the date was Sep 21 2012.... Exactly one year from my mastectomy. Crazy, I didn't expect it to come back so soon either. In my case tamoxifen failed so the new plan is to put me in a chemical menopause with lupron then try another drug. We'll see.

    5/5/2011, IDC, 5cm, Stage IV, 3/10 nodes, mets, ER+, HER2-Chemotherapy 05/21/2011 Adriamycin, Cytoxan, TaxolSurgery 09/21/2011 Mastectomy (Both); Lymph Node Removal (Left); Reconstruction: Tissue expander placement, Breast implants (permanent) (Both)Hormonal Therapy 10/05/2011 TamoxifenRadiation Therapy 11/09/2011 External

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  • Stix
    Stix Member Posts: 723
    edited February 2013

    Hi. Just found your post. I had high grade dcis multiracial 2·5 years ago ...had a mastectomy with reconstruction. Then, in December of 2012 I had a biopsy which showed nothing but a radial scar which they suggested I have an exploration/lumpectomy of calcification s....which I only had a 40 %chance of atypical cells and less for dcis. The results were atypical lobular hyperplasia...I am grateful they didn't find invasive cancer but this sucks. My surgeon is suggesting prophylactic. Mx. I still have to have a MRI in March due to a staple 8 mm mass.Really putting a dent in my life.....such opp pose to start a side job besides my regular job. And don't know what I am going to tell them. At least I am not the only one with this scenario. How r u doing?

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  • Survivorpagets
    Survivorpagets Member Posts: 7
    edited February 2013

    hi ladies I too was diagnosed with DCIS no evidence of invasion measuring 11 cm I did a mastectomy. my oncologist is saying i need chemotherapy and telling me I have stage 2  breast cancer...how is it possible to have DCIS (no IDC) and calling it stage 2...im questioning her credibility. need second opinion

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  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited February 2013

    Survivor: Either you have Grade 2 DCIS or Stage 2 IDC, but there is no such thing as Stage 2 DCIS. DCIS is defined as Stage 0. I would ask for the pathology report if you have not yet received it to make sure that you are 100% clear on the diagnosis. Chemo is an unusual course of treatment if it is pure dcis (and no idc), perhaps the thought is that given the amount of bc that there may be idc. In fact, my final pathology report did detect a trace amount of idc and I was not prescribed chemo; my oncologist said it was below the typical 1 cm of idc before she recommends chemo. but that was her metric. 

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