Is tamoxifen always necessary for stage 0?

moskitoe
moskitoe Member Posts: 6

My 72 yo mother was recently diagnosed with DCIS, intermediate grade. She is scheduled for surgery this month followed by radiation treatments but we are dealing with some anxiety regarding the 5 years of tamoxifen the oncologist is recommending. I have researched her biopsy report using the info on this site and what I have understood is that the risk of recurrence drops to 15% with surgery and radiation. We are concerned that the tamoxifen treatment will provide little benefit but many troubling side effects. The oncologist refers to the tamoxifen treatment as a given and really minimizes any side effects from it but we remain skeptical. I am in the process of trying to get a second opinion but she would have to pay out of pocket for that so it may not happen. Is anyone in similar situation and what have you done? What kind of questions should I ask the oncologist? She is in good health for her age except for osteoporosis. Thanks.

Comments

  • MTwoman
    MTwoman Member Posts: 2,704
    edited December 2016

    moskitoe - sorry you are going through this, so glad your Mother has you to help advocate for her!

    you didn't mention her ER receptor status. My understanding is that tamoxifen is used for pre-menopausal women and an AI (like Arimidex) is used for post menopausal women to reduce the risk of a recurrence. Tamoxifen is a "nonsteriodal antiestrogen" and it is the antiestrogen properties that provide protection for many women to reduce their risk. As I assume (at 72) that your mother is post-menopausal, there should be at least one other option. I am not a doctor, and cannot offer you medical advice, but I would also be looking into how much the second opinion would cost, given that her current MO is "minimizing side effects" instead of having a cogent conversation about all options and risks/benefits. The questions I would have for the MO would include: What other medications are options for reducing her breast cancer recurrence risk? What are the pros and cons of each medicine? What is her recurrence risk if she opted no to take the meds?

  • MTwoman
    MTwoman Member Posts: 2,704
    edited December 2016

    I guess I should also add that I had DCIS which was ER negative and my MO did not recommended for me to take Tamoxifen as it hasn't been shown to be effective in those cases.

  • MTwoman
    MTwoman Member Posts: 2,704
    edited December 2016

    moskitoe, check out this link

    https://www.eurekalert.org/pub_releases/2016-12/ifqa-aif122316.php

    it was just published. maybe you could read, print it out and discuss with your Mom's MO?

    Good luck!

  • moskitoe
    moskitoe Member Posts: 6
    edited December 2016

    Thank you so much for your reply. Her ER status has not been tested and there was no mention of testing either. I will have to add that to my list of questions. Thank you for the information!

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited December 2016

    Hi moskitoe:

    It is sort of premature to be making any decisions about endocrine therapy. This is because the results of the surgical pathology may alter understanding of recurrence risk (e.g., margin sizes, extent of DCIS, grade, etcetera). Further, according to the American Society of Clinical Oncologists (ASCO), in women diagnosed with apparently pure DCIS by minimally invasive biopsy (e.g., stereotactic core-needle biopsy), invasive cancer is reported in 10% to 20% of cases overall, approximately half of which are limited to micro-invasive cancer.

    Accurate estimates of individual recurrence risk should be based on the combined results of the pathology from all biopsies and the surgical pathology. For pure DCIS,

    Solin (2015): http://jco.ascopubs.org/content/early/2015/09/14/JCO.2015.60.8588.abstract

    "Five randomized clinical trials have consistently demonstrated that adding radiation treatment after surgical excision for patients with DCIS reduces the risk of local recurrence in the ipsilateral breast by approximately half. (8-16) The Early Breast Cancer Trialists' Collaborative Trial Group (EBCTCG) meta-analysis combined data from four of the randomized trials of radiation treatment after surgical excision.(17) Two randomized clinical trials have demonstrated that adding tamoxifen reduces the risk of all breast cancer events (ipsilateral plus contralateral) for hormone receptor–positive DCIS tumors.(9,10,14,18,19)."

    Thus, following a diagnosis of pure DCIS, whole-breast radiation therapy may achieve a local, same-breast relative risk reduction benefit of ~ 50%. However, the potential actual or absolute risk reduction benefit for an individual will depend upon the magnitude of their personal risk without radiation, which may vary in view of factors such as grade and margin size. For example, if a person's estimated 10-year risk of ipsilateral (same) in-breast recurrence was estimated to be about 15%, then their potential risk reduction benefit following radiation would be about 0.50 x 15 % = 7.5 %. This would leave a residual ipsilateral 10-year recurrence risk following radiation of about 7.5% (15% - 7.5% = 7.5%). Recurrences may be DCIS or invasive disease, with approximately half being invasive.

    If the disease is hormone receptor-positive, then with an accurate understanding of her residual risk after radiation therapy, the risk of severe adverse effects of endocrine therapy can be weighed against the potential benefit of treatment. Note that endocrine therapy can provide additional benefit in terms of preventing contralateral disease.

    By the way (and as noted above), at age 72 your mother should be post-menopausal, and would have the additional option of an aromatase inhibitor (if found to be hormone receptor-positive). See this post for more information about use of aromatase inhibitors for hormone receptor-positive DCIS and recent clinical studies:

    https://community.breastcancer.org/forum/68/topics/848804?page=1#post_4821528

    Co-morbidities such as osteoporosis may be considerations in the selection of a particular drug for endocrine therapy.

    Hoping for the best possible pathology results for your mom.

    BarredOwl

  • coraleliz
    coraleliz Member Posts: 1,523
    edited December 2016

    I have a friend diagnosed at 42 with ER+, intermediate grade DCIS. Tamoxifen was recommended but she declined. She did have a lumpectomy & radiation. Aromatase Inhibitors can lead to osteoporosis, which can be treated with other medications. Your mom's existing osteoporosis may be the reason her MO wants her on Tamoxifen.

    "We are concerned that the tamoxifen treatment will provide little benefit but many troubling side effects" Little benefit is defined differently by each of us. Ask her MO & 2nd opinion MO for the statistics associated with reoccurence. The doctors might not agree with each other. The benefit may be quite small in your mothers eyes.

    Your mom can also try Tamoxifen(or aromatase inhibitor) & quit at anytime.

    Wishing her well with her upcoming surgery.

  • Annette47
    Annette47 Member Posts: 957
    edited December 2016

    It may be worth getting a second opinion from a different oncologist as to the benefits/risks of Tamoxifen in your mother’s case. The purpose of the Tamoxifen in a case like your mother’s is two-fold. To prevent recurrence (and if her diagnosis is pure DCIS, then it could only be a local recurrence initially), and to prevent another new primary from forming. If you have any invasive cancer, it is also to prevent a distant recurrence, but that is not possible with pure DCIS. The recommendations differ depending on your risk of each of those things, and age does make a difference. I had DCIS with a micro-invasion, so all three reasons technically apply to me, although the risk of a distant recurrence is minimal and I had both wide margins and radiation, which minimizes the risk of a local recurrence - my biggest concern is a new primary. I was 45 at diagnosis and the thinking was that I had another 40 years or more to worry about it. My mother was diagnosed with both DCIS and a separate, small area of invasive cancer about 6 weeks before I was. She had a mastectomy with wide margins so the risk of a local recurrence is minimal. According to her Oncotype testing on the invasive part, she is at low risk of a distant recurrence. The main reason then to take it for her is to protect the other breast. In her case, having been diagnosed at 75 years old, that risk is much smaller than mine and she declined further treatment, opting for vigilant screening instead.

  • Fe_Princess
    Fe_Princess Member Posts: 245
    edited January 2017

    I am shocked that your doctor is talking about Tamoxifen without knowing the receptor status too. I have declined tamoxifen but get pressure from my oncologist. We forget that we own our bodies and we are our own best advocates.

  • PNWBCHgirl
    PNWBCHgirl Member Posts: 115
    edited January 2017

    I am a little confused about the tamoxifen for your mother you said she was 72? I was under the impression that tamoxifen was used for premenopausal women . Just for the record I am ER positive and chose no Hormone blocking meds when I was given the option by all my DR's including the MO because my recurrence percentage was very low, Her exact Quote was that " She would not lose any sleep trying to figure out how to persuade me to change my mind" .

    I am also confused hat they were talking about this without knowing the pathology report.

  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited January 2017

    Id like to add that the majority of women to take Tamoxifen experience little to no side effects. I took Tamoxifen for over 1 1/2 years with only the occasional hot flash. I switches to an AI a couple of weeks ago, and still no SEs. AIs can cause bone loss. So if your Mom already has osteoporosis, that may be why they're not recommending AIs

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

    In the DCIS setting (with no evidence of invasive disease), endocrine therapy may provide greater risk reduction benefit to those receiving breast conserving surgery (lumpectomy) than to those who have undergone either unilateral or bilateral mastectomy.

    It is quite common for surgeons to mention to patients that in the case of hormone receptor-positive disease (which is very common), five years of endocrine therapy will likely be considered or recommended. This type of discussion is informational in nature. Again, the question of endocrine therapy will be revisited when the full surgical pathology and hormone receptor status are available. The question of endocrine therapy is within the expertise of the Medical Oncologist ("MO") (not surgical oncologist), and when the full pathology is available, the MO should provide a clear explanation of individual recurrence risks, the potential risk reduction benefits of any proposed treatment, and the risk of severe adverse effects, so that the patient can weigh these in light of her personal risk tolerance, and make an informed decision about what is right for her. Ultimately, the patient is free to choose or decline such treatment.

    Tamoxifen can be and is used in both pre-menopausal and post-menopausal women. In fact, tamoxifen was the only option included in NCCN guidelines for women with pure DCIS (regardless of menopausal status) until quite recently. The NCCN guidelines were updated in early 2016 to add the option of an aromatase inhibitor for post-menopausal women with DCIS in light of the results of the NSABP B-35 and IBIS-II trials.

    The current version of the NCCN guidelines (Version 2.2016) clearly indicates that tamoxifen can be a suitable option in the DCIS setting regardless of menopausal status:

    "- Endocrine therapy [for DCIS]:

    Tamoxifen for premenopausal patients

    Tamoxifen or aromatase inhibitor for postmenopausal patients with some advantage for aromatase inhibitor therapy in patients <60 years old or with concerns for thromboembolism"

    Again, these drugs are used in hormone receptor-positive patients (ER+ and/or PR+), and they have different side effect profiles, which may influence which drug is recommended to any particular patient for their consideration by an expert medical oncologist.

    As far as not testing the biopsy sample for ER and PR status of the DCIS, this may become more common in future in those receiving surgery as first intervention for apparently pure DCIS. See for example,

    VandenBussche et al. (2016), "Reflex Estrogen Receptor (ER) and Progesterone Receptor (PR) Analysis of Ductal Carcinoma In Situ (DCIS) in Breast Needle Core Biopsy Specimens: An Unnecessary Exercise That Costs the United States $35 Million/y"

    http://journals.lww.com/ajsp/Citation/2016/08000/Reflex_Estrogen_Receptor__ER__and_Progesterone.11.aspx

    "Abstract:

    Most institutions reflexively test all breast core needle biopsy specimens showing ductal carcinoma in situ (DCIS) for estrogen receptor (ER) and progesterone receptor (PR). However, 5 factors suggest that this reflex testing unnecessarily increases costs. First, ER/PR results do not currently impact the next step in standard therapy; namely, surgical excision. Second, a subset of surgical excisions performed for DCIS diagnosed on core needle biopsy will harbor infiltrating mammary carcinoma, which will then need to be retested for ER/PR. Third, because ER and PR labeling is often heterogeneous in DCIS, negative results for ER/PR on small core needle biopsy specimens should logically be repeated on surgical excision specimens with larger amounts of DCIS to be sure that the result is truly negative. Fourth, many patients with pure ER/PR-positive DCIS after surgical excision will decline hormone therapy, so any ER/PR testing of their DCIS is unnecessary. Fifth, PR status in DCIS has no proven independent value. We now examine the unnecessary added costs associated with reflex ER/PR testing of DCIS on core needle biopsy specimens due to these factors. We reviewed 58 core needle biopsies showing pure DCIS that also had a resulting surgical excision specimen at our institution over a period of 2 years. No patient received neoadjuvant hormone therapy. On surgical excision, 5 (8.6%) had only benign findings, 44 (75.9%) had pure DCIS, and 9 (15.5%) had DCIS with invasive mammary carcinoma. The 9 cases with invasive mammary carcinoma in the surgical excision specimen (16%) and the 4 pure DCIS in surgical excision specimens that were ER/PR negative on core needle biopsy would need repeat ER/PR testing. The total unnecessary increased cost of core needle biopsy specimen testing of these 13 cases was $8148.92 ($140/patient for the 58 patients in the study). We found that ER/PR testing results impacted patient management in only 16/49 pure DCIS cases after surgical excision (33%), indicating that ER/PR testing costing $20,685.72 ($357/patient in the study) had been performed unnecessarily. PR testing could have been omitted in the 16 cases in which ER/PR results were used, which would have saved $5014.72, or $86.46 per patient. Extrapolating the increased cost of $583 per DCIS diagnosis on core needle biopsy to 60,000 new cases of DCIS in the United States each year, reflex core needle biopsy ER/PR testing unnecessarily increases costs by approximately $35 million. We recommend that ER/PR not be reflexively ordered on core needle biopsy specimens or surgical excision specimens containing DCIS, but instead that ER alone be performed on surgical excision specimens only when hormone therapy is a serious consideration after medical oncology consultation."

    For a layperson explanation regarding the above, see this Medscape article:

    "Testing After DCIS Needle Biopsies: $35 Million Boondoggle"

    http://www.medscape.com/viewarticle/865326#vp_1

    (To access the full text, google the title of the article to retrieve the full text or register for free with Medscape.)

    Sending best wishes again for the best possible surgical pathology results.

    BarredOwl


Categories