confused about dcis treatment

goldieloks
goldieloks Member Posts: 6
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I ..  was diagnosed with dcis in May of this year. Since then i have had 2 lumpectomys and 6 weeks of radiation.My dcis was high grade and estrogen neg.After i finished rads the surgeqn sent me to the oncologist and he put me on aromisan. I have done much research and have found no data on hormones helping estrogen neg. cancers.I went back to the oncologist and he said new research is starting to show these drugs might help estrogen neg. cancer.At this point i was totally confused so i went for a second opinion.The new oncologist said he never heard that any meds. can help estrogen neg. cancer and to stop taking the drug.I am now even more confused do i listen to the first dr. or stop the drug like the new dr. said.Both doctors have excellent reputations and i want to do everything to try to not get a reaccurance.My question is is anyone taking any meds. who are estrogen negative.I am scared to stop the pill for i am not sure which dr. to listen to.Please give me some advice on what other estrogen neg. women are doing and if anyone has heard aromisan can help prevent a reaccurance. I would appreciate any advice you can give me.

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  • dlb823
    dlb823 Member Posts: 9,430
    edited October 2011

    Goldilocks, I think I would first ask onc #1 for a copy of any research supporting his statement.  I kind of doubt he can provide anything concrete, but would certainly give him the benefit of the doubt if you like him and he has as good a reputation as you say.  But I haven't heard of giving A/I's to estrogen negative women.

    Were either of the oncs you saw at an NCI-designated cancer center?  These are the top cancer treatment places in the US, and they should have at least one onc who specialzes in bc, and possibly one who is even an expert in hormone negative bc.  

    http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html

    If there isn't one close to you, see if they can recommend an onc in your area.  Since you're after a very specific bit of information, they may even be able to do a consultation over the phone with you.

    I don't know if you're TN (triple negative), but if you are, you might also want to re-post your question in the TN forum here.   (Click on Forum Index above to find that section.)  

    Good luck in figuring this out, and please let us know what you learn.   Deanna 

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  • redsox
    redsox Member Posts: 523
    edited October 2011

    Goldieloks,

    I agree with what dlb823  said and would ask you:

    Are you in the United States?

    Are you on a research study for aromisan?

    Are you PR + ?

    Unless I missed something recently, tamoxifen is the only hormonal therapy approved for use with DCIS patients in the USA by the FDA.  And the body of evidence is that it works for hormone positive patients only.

    I do not know the significance of PR+ for a patient who is ER-, but that might have the doctors looking at hormonal therapy.  Generally, this treatment would be unusual in the USA unless it is part of a research study.

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  • Mantra
    Mantra Member Posts: 968
    edited October 2011

    My cancer was ER/PR negative (DCIS) too and both my surgeon and oncologist said there is no medication/none required for ER/PR negative cancer.

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  • cycle-path
    cycle-path Member Posts: 1,502
    edited October 2011

    "Unless I missed something recently, tamoxifen is the only hormonal therapy approved for use with DCIS patients in the USA by the FDA."

    Really? What about the other SERMS and AIs? My doc and I talked about AIs but ruled them out because I am osteoporotic, but otherwise I probably would have tried one. Was she considering an off-label use? 

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  • redsox
    redsox Member Posts: 523
    edited October 2011
    As I said,

    "Unless I missed something recently, tamoxifen is the only hormonal therapy approved for use with DCIS patients in the USA by the FDA."

    SERMS and AIs are not FDA-approved for DCIS but some doctors might use them off-label, especially if you had a contraindication to tamoxifen.

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  • cycle-path
    cycle-path Member Posts: 1,502
    edited October 2011

    I checked the web site for Aromasin and it specifically says it is only for women with ER+ BC.

    http://labeling.pfizer.com/ShowLabeling.aspx?id=523 

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  • goldieloks
    goldieloks Member Posts: 6
    edited October 2011

    Thanks everyone for your replies.I am both er/pr negative and post menapausal. The first dr. i went to showed me data from a conference he attended in june.It showed very little data on aromisin helping estrogen negative women with breast cancer.When i told him my findings he said the study did not specify if the trial had only estrogen positive woman using drug he concluded that some of the woman were estrogen negative.for the article did say all woman benifited from the drug. The research came from a conference in June of this year that he attended. It was published by the new england journal of medicine iread the research they published and to my understanding oit did not specify dcis but advanced breast cancer.The dr. said if it helps advanced cancer it should help early stages of breast cancer,and it can help protect the breast that was not affected.I live in new jersey and went to 2 major cancer centers and got 2 different opinions.I am going to see  a  third  dr.and i will  decide  i    still taking aromisin but have been getting joint pain,so if there is no benifit i will stop the drug.I  do not want to take something that can make me feel worse and get no benifits from taking it.I will keep you posted on what i decide .If you have heard of anyone taking meds being er/pr negative please let me know 

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  • cycle-path
    cycle-path Member Posts: 1,502
    edited October 2011
    "Aromatase inhibitors do have side effects and they are significant," Baselga said. Women can have hot flashes, get arthritis and suffer bone loss from taking the drugs, which can have a big impact on a woman's quality of life, especially for someone who doesn't actually have cancer, he said. He also pointed out that 94 women were treated with this drug and did not benefit before one woman was prevented from getting breast cancer.

    So when it comes to prescribing Aromasin, "I would limit it to patients who have very high risks" for getting breast cancer, Baselga said.
     
     
    And here's an article with quotes from the author himself of the study your doc is referencing: 
     
    "We believe exemestane is comparable to anastrozole and provides a new option for five years of upfront adjuvant therapy for patients with hormone receptor-positive early breast cancer," said Goss, of Massachusetts General Hospital in Boston. 
     
     
    To be extremely blunt, this info makes me wonder if your doctor can't read, just refuses to believe evidence he doesn't like, or simply likes making women miserable. I would run, not walk, away from him!
     
     
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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited October 2011

    Interesting topic.  FYI, I found the summary of the study on this website, for those who are interested:

    http://www.breastcancer.org/risk/new_research/20110604.jsp 

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