postmenopausal DCIS for hormone receptor type

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goldnmom
goldnmom Member Posts: 189
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I'm gathering some information for a friend. Does anyone know if hormone therapy is recommended for postmenopausal DCIS? Aromatase Inhibitor or Tamoxifen? She has had lumpectomy and is getting radiation therapy now.

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  • meau28
    meau28 Member Posts: 8
    edited May 2010

    Dear goldnmom,

    So sorry to hear about your friend. I can ony tell you what my Medical Oncologist has me on.

    I am Postemnopausal DCIS ER+/PR+. Originally had a 2X lumpectomy then a partial mastecomy

    with clear margins. The ONLY thing she would put me on is Tamoxifen. I did all my research so discussed the subject well. Did not want to go on Tamoxifen (I cried) but we, as a team along with my Radiation Oncologist, decided on Tamoxifen. I started last October and have had some interesting SE such as severe feet and leg cramps and bladder control issues, dry skin and thinning hair. But heck, at my age those are common. Plus it does actually have some good SEs such as bone loss protection. I could have said"no" and I still have that option. Many women have different reactions. Trust your own judgement and make an informed choice. Most women who are ER+/PR+ are put on "hormone" therapy. If your friend is ER-/PR- then neither will help.

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  • Elaine7736
    Elaine7736 Member Posts: 5
    edited May 2010

     I'm kind of piggy-backing on your question.  Does anyone know or remember the cost of er/pr receptor testing?  I was dx DCIS grade 3 in April. I am having an mx  in about one week.  I had been on bioidentical hormones and breast surgeon had me cold turkey off the hormones.  I want to have the test done for hormone receptor status but she says all DCIS is always positive.  I can see from reading the boards, this is not true.  I am borderline on dexascan  for osteoporosis so the information will be very helpful in dealing with this issue and any subsquent treatment issues. Thanks for you time and help. 

    Elaine7736

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  • Jelson
    Jelson Member Posts: 1,535
    edited May 2010

    While there are clinical trials going on for AIs for DCIS, Tamoxifen is the only hormone therapy recommended for ER/PR positive DCIS.

    SEs? I think they are worse for premenopausal than for post.

    Elaine7736- I don't think I have read of anyone here on the DCIS board not having their ER/PR status tested unless their biopsy results were too small to test.

    However, HER2 Human Epidermal growth factor Receptor 2  is not usually tested for DCIS tumors and while there is a clinical study being done, the targeted therapy, Herceptin, for those whose tumors are HER2+ is not yet recommended for women with DCIS. 

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  • Elaine7736
    Elaine7736 Member Posts: 5
    edited May 2010

    Thanks for your response Jelson. I appreciate it and you. I am finding a person needs to be their own best researcher because this DCIS bc business is relatively new,mostly found by mammo and in some cases never becomes invasive, but who would risk not treating it. I will be insisiting on receptor testing but have as I said been told it's all positive, I am strong willed myself so I know bs will order it.  Was it expensive? Thank you, Elaine7736

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  • Jelson
    Jelson Member Posts: 1,535
    edited May 2010

    Elaine7736

    I looked through my old bills but the pathology and lab stuff is in code, so I can't tell what might be associated with the er/pr determination. Many people get second opinions on their pathology reports/slides. Perhaps by arranging a second opinion, you could in addition find out your er/pr status.

    Your surgeon is just plain WRONG if she says that all ER/PR is positive for DCIS. As you have noted, you will see women on this board whose personal info shows ER/PR status as negative and for them, Tamoxifen is not useful. There are women who are getting double mastectomies for whom the ER/PR status doesn't matter, since they probably won't be taking tamoxifen since they don't have a "contralateral"! breast to protect. However, they too usually post their ER/PR status.  Have you spoken with a Medical Oncologist about this issue? Testing for ER/PR status for DCIS seems to be a standard of care and you shouldn't have to go scrabbling around to get that information. 

    Julie E

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited May 2010

    I have absolutely no idea how much it costs, it seemed to be part of the standard pathology process.  I mean, I wasn't asked if I wanted it and I wasn't billed separately for it. 

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  • OnePetie
    OnePetie Member Posts: 68
    edited May 2010

    Jelson.....I was confused by your statement that Arimidex is not used for postmenopausal DCIS. I do have some microinvasion (<0.1) but my MD Anderson Onc would have prescribed Arimidex for me even if I were purely DCIS. I believe there are quite a few DCIS ladies here on BCO who are taking Arimidex,as well as bilateral MX sisters.

    Che

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  • HantaYo
    HantaYo Member Posts: 280
    edited May 2010

    Namaste!

    I am postmenopausal. I had 3 core bx, one ultasound guieded and 2 steriotatic.  No specimen was large enough to determine the hormone receptor status and I was told that the receptor status would be determined when I had my mastectomy surgery.  I chose mastectomy for treatment because the cancer sites were in multiple quadrants and the bxs could not rule out invasive or not.  I made a decision for prophylaxis on the non cancer side also.  I received the temporary pathology report 5 days after surgery which showed DCIS without invasion in all of the sites on the cancer side and Atypical Ductal Hyperplasia on the prophylactic side.  The hormone receptor status was still pending and I will find out what it is on my next oncologist visit in a month.  However, my oncologist told me that even if it is postive he will still recommend no further treatment.  Since it was DCIS and I had bilateral mastectomy, my risk for reoccurrence is only about 1 %.  He said that any further treatment, whether it is chemotherapy or hormone therapy, offers no statistical advantage for reoccurrence and zero advantage for 5 year survival while the risks of chemotherapy or hormone therapy for complications and side effects is quite high.  To me it means that I am accepting a score of 99% instead of doing chemo/hormone and improving my score to 99.5%.  Not worth it for me.  My sister, 1 year older and diagnosed 1 1/2 years prior to me had a unilateral mastectomy with DX of DCIS with micorinvasion in one node and is on Arimidex. She is on a lot of drugs post kidney transplant and is ineligible for chemo.

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  • Beesie
    Beesie Member Posts: 12,240
    edited May 2010

    As Jelson said, only Tamoxifen is approved for women with DCIS.  The AIs are not approved however there are a number of clinical trials underway.  It's true that some post-menopausal women with DCIS are prescribed Arimidex but these prescriptions are off-label (i.e. the doctor is choosing to prescribe the drug for a condition for which is it not approved).

    Jelson is also absolutely correct that all DCIS is not ER+/PR+.  Mine was ER+/PR- and there are women here who are ER-/PR-.  It should be part of the standard pathology work-up to test DCIS for hormone status.  This is important, since it determines it Tamoxifen might be beneficial in reducing recurrence risk, for those who have lumpectomies for DCIS.  For those who have mastectomies, most oncologists will not prescribe hormone therapy as a means to reduce recurrence risk because the recurrence risk after a mastectomy for DCIS is already so low that the benefit from Tamox (or an AI, off-label) would be lower than the risks that you expose yourself to by taking the drug.  However, for those who have a single mastectomy only (as I did), Tamox is usually discussed as a possible way to reduce the risk of a new cancer in the contralateral breast.  My oncologist presented me with the option but actually recommended against Tamox for me.  As HantaYo explained, for those who have a bilateral for DCIS/non-invasive cancer, the really is little benefit to hormone therapy. 

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  • OnePetie
    OnePetie Member Posts: 68
    edited May 2010

    Thanks, Beesie! My confusion was making my head hurt. MD Anderson does have a very aggressive approach...hence my Arimidex (even without my microinvasion). Fortunately, I'm doing really well on it.......

     Che

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  • alpinevalley
    alpinevalley Member Posts: 1
    edited November 2013


    Beesie or others


    I am wondering if you know anything about Arimidex and in what cases of BC it is prescribed. I had a bilateral mastectomy 2 weeks ago. I had lots of a DCIS all over the left breast ( thanks to a poor radiologist who sent me on my way after an ultrasound in August 2012 saying I had a "benign cyst" when I found out a year later in August 2013 mammo/subsequent ultrasound that it wasn't a benign cyst at all! Had a better radiologist this time!) and in two areas they found areas of infilltrating (.3 and .4 centimeters) ductal carcinoma. I was hoping that I would not need Arimidex Tamoxifen or the like but the sturgeon said the onco may recommend radiation and/or Arimidex due to the extensiveness of the DCIS and possibly due to two areas of invasion. I am estrogen and progesterone positive and HER2 negative. I have read awful side effects of these drugs and I usually am the statistic? Thx Beesie if you still see this thread -- I realize it is old. I am new to this site


    Thx

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