Ovaries Out Even if You are Gene Negative?

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KCMC
KCMC Member Posts: 208

I was just diagnosed last week with IDC Estrogen and Progesterone positive. I am 47 years old and still have my periods. I had to have my Mirena IUD replaced and explained today at my Gynecological visit why I was doing it (it releases estrogen in your uterus). The Gynecologist fitted me with a Copper IUD (no hormones) and then told me that her specialty is OBGYN Oncology. She said I should really think about having my ovaries removed instead of going on Tamoxifen and then go on the pill regimen that post menapousal women go on. She believes this would be more effective. I have my Dr.'s appointment on Thursday this week with the Breast Center and I am going to bring it up to my Dr. Has anyone heard of doing this? My head is spinning lol!



Comments

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited March 2017

    Hi KCMC:

    I think she is suggesting consideration of oophorectomy plus an aromatase inhibitor. This combination is a relatively intensive approach to endocrine therapy, which may or may not be warranted in the individual case, depending on recurrence risk profile.

    Recommended approaches to endocrine therapy depend on a variety of factors, and so this is a question for a person with the appropriate expertise: a Medical Oncologist.

    In post-menopausal women, including those who have received a bilateral oophorectomy, tissues other than the ovary produce clinically significant amounts of estrogen. Aromatase Inhibitors ("AI") block the synthesis of estrogen by such non-ovarian tissues.

    In contrast, Tamoxifen can be used in those who are either pre-menopausal or post-menopausal. This is because it works by blocking the action of estrogen at the level of the estrogen receptor in breast cells (e.g., in any remaining breast tissue or in rogue breast cells at distant sites), regardless of the source of the estrogen (be it the ovary or other tissues).

    In general, initial adjuvant (post-surgical) endocrine therapy options may include one or more of the following, depending on various factors, such as type of cancer (e.g., DCIS, IDC), recurrence risk profile, and co-morbidities:

    Pre-menopausal:

    (a) Tamoxifen alone; or

    (b) Tamoxifen plus Ovarian Suppression (a second drug to suppress/shut down ovarian function); or

    (c) Ovarian Suppression ("OS") plus an Aromatase Inhibitor ("AI") (in pre-menopausal women, use of an AI requires added OS to shut down ovarian function; using both is intended to stop estrogen production from all sources)

    => If oophorectomy is received, see post-menopausal options

    Post-menopausal (this includes patients whose ovaries have been removed by bilateral oophorectomy):

    (a) Tamoxifen; or

    (b) Aromatase inhibitor

    Tamoxifen, aromatase inhibitors, and the drugs used to induce ovarian suppression have different side effect profiles. Oophorectomy has different health impacts. In pre-menopausal women, the choice between tamoxifen alone and other more intensive approaches entails a personalized risk/benefit analysis.

    In all cases, such decisions should be made in consultation with a Medical Oncologist in light of one's risks of loco-regional and distant recurrence, risk of new disease, menopausal status, and overall health and presentation, including medical history or co-morbidities that may be potentially relevant to the particular side effect profiles of a specific drug or intervention.

    Best wishes as you gather more information about what is right for you.

    BarredOwl

  • MTwoman
    MTwoman Member Posts: 2,704
    edited March 2017

    Hi KCMC, I have heard of this. I'm hoping others share their experience with you as I don't have any. From what I've read, there are very different side effect profiles for Tamoxifen vs an AI (aromatase inhibitor). some women do use a medication for ovary suppression in order to be able to take an AI instead of Tamox, if they are premenopausal. If you don't get answers here (in the "waiting for test results" forum) look at the "hormone therapy" forum for related topics, or post a question there if you want to hear from women about this issue. You may get better response. Good luck and sorry I couldn't be more help!

    (edited to read "Yay, BarredOwl to the rescue!" she was posting her detailed, well supported info at the same time I was posting)

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited March 2017

    I was on Tamoxifen two years and started having uterine issues, all were benign but I decided to have my ovaries out anyway to move on to an AI. I was on the AIs for a total of ten months before I threw in the towel and went back to Tamoxifen. I have had genetic testing for Brca, Bart, and the 19 gene panel from Color Genomics and no mutations were found. The surgery is easy, menopause? Not so much.

  • 7of9
    7of9 Member Posts: 833
    edited March 2017

    I asked to have mine out at 40 - they said no. 3 1/2 yrs later after recurrence they finally took out all the downstairs plumbing. Wish I would have barked louder and longer the first time!

  • Eian01
    Eian01 Member Posts: 30
    edited March 2017

    Yes KCMC this is the procedure............even my head started to spin

  • KCMC
    KCMC Member Posts: 208
    edited March 2017

    Thank you so much ladies. It means a great deal to me that I have your support and knowledge. Barred Owl I am printing out your response and I am going to place it in my binder. I am at the beginning of my journey and just a bit overwhelmed, again, thank you everyone!

  • abg712
    abg712 Member Posts: 20
    edited March 2017

    Hi ladies! I am in the middle of trying to decide the same thing: stay on Tamox or go to Lupron shots + then switch to an AI. I have been told to read the SOFT and the TEXT studies?! Basically, my MO told me that in my case, Tamox is almost as good as they can offer. Shutting down my ovaries medically and then switching to an AI is an option - but she said it would potentially make my chances better by 1-2% - So that is what I have learned so far and am deciding. I'm premenopausal, 43. Any other women who have gone this route?

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited March 2017

    I'm not so sure I'd do instant menopause again and I was 55.

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited June 2018

    Hi abg712:

    Very generally, adding ovarian suppression tends to be used in situations where more intensive treatment is warranted by recurrence risk. If your medical oncologist has presented you with more than one option and you are unsure what to choose, you may find a second opinion with another medical oncologist at an independent institution to be helpful.

    BarredOwl



    For those who are pre-menopausal and would like to read about Ovarian Suppression (plus tamoxifen or an AI) and to consult SOFT and TEXT/SOFT study publications to further inform discussions with their medical oncologist, I have the following bookmarked.

    This is NOT a comprehensive list of publications related to the SOFT and TEXT trials.

    These documents are not a substitute for current, case-specific, expert professional medical advice from a Medical Oncologist ("MO"). It is easy to misunderstand such highly technical documents and whether and how their guidance should be applied in the individual case. Guidelines represent snapshots in time, and there may be appropriate exceptions to what is provided for the general case. There may be additional, more recent studies and/or conflicting studies. Therefore, if a document influences your thinking in any way, it is essential to confirm your understanding, as well as currency and applicability to your case, with your MO.


    ASCO 2016 Guideline Update re Ovarian Suppression:

    Burstein (2016), "Adjuvant Endocrine Therapy for Women With Hormone Receptor–Positive Breast Cancer: American Society of Clinical Oncology Clinical Practice Guideline Update on Ovarian Suppression"

    http://ascopubs.org/doi/full/10.1200/JCO.2015.65.9573

    (Free PDF version available under PDF tab; See also, Supplements tab)


    The Update above was issued in light of the results of the following SOFT and TEXT publications:

    SOFT: Francis (2015), "Adjuvant Ovarian Suppression in Premenopausal Breast Cancer"

    "[R]esults of the planned primary analysis in SOFT comparing adjuvant tamoxifen plus ovarian suppression with tamoxifen alone after a median follow-up of 67 months"

    Main Page: http://www.nejm.org/doi/full/10.1056/nejmoa1412379#t=article

    PDF version: http://www.nejm.org/doi/pdf/10.1056/NEJMoa1412379

    Supplementary Appendix to Francis: http://www.nejm.org/doi/suppl/10.1056/NEJMoa1412379/suppl_file/nejmoa1412379_appendix.pdf


    TEXT/SOFT: Pagani (2014), "Adjuvant Exemestane with Ovarian Suppression in Premenopausal Breast Cancer"

    "[P]rimary combined analysis of data from TEXT and SOFT comparing adjuvant exemestane plus ovarian suppression with adjuvant tamoxifen plus ovarian suppression after a median follow-up of 68 months"

    Main Page: http://www.nejm.org/doi/full/10.1056/nejmoa1404037#t=article

    PDF version: http://www.nejm.org/doi/pdf/10.1056/NEJMoa1404037

    Supplementary Appendix to Pagani: http://www.nejm.org/doi/suppl/10.1056/NEJMoa1404037/suppl_file/nejmoa1404037_appendix.pdf


    [[[EDIT: Since the above results and Guideline Update were published, additional results are now available:

    SOFT/TEXT: Francis et al. (2018), "Tailoring Adjuvant Endocrine Therapy for Premenopausal Breast Cancer"

    Main Page: https://www.nejm.org/doi/full/10.1056/NEJMoa1803164

    PDF version: https://www.nejm.org/doi/pdf/10.1056/NEJMoa1803164

    Supplementary Appendix to Francis (2018): https://www.nejm.org/doi/suppl/10.1056/NEJMoa1803164/suppl_file/nejmoa1803164_appendix.pdf ]]]


    For those with Lobular disease (ILC), ask your MO about BIG 1-98 and other studies:

    Filho (2015): http://ascopubs.org/doi/full/10.1200/JCO.2015.60.8133

    (Free PDF version under PDF tab; See also, Supplements tab)

    ASCO Post Article re BIG 1-98, "Benefit of Adjuvant Letrozole vs Tamoxifen Is Greater in Lobular Than in Ductal Breast Cancer": http://www.ascopost.com/News/31718


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