LCIS sclerosing adenosis and intraductal hyperplasia

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TOOTSIETLC
TOOTSIETLC Member Posts: 7
LCIS sclerosing adenosis and intraductal hyperplasia

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  • TOOTSIETLC
    TOOTSIETLC Member Posts: 7
    edited March 2009

    Hello, I'm new to this.  I had a Left breast lumpectomy in 3/08 which turned out to be LCIS with proliferative changes, sclerosing adenosis and intraductal hyperplasia, my oncologist recommended radiation and tamoxifen, I want another child, so I didn't want to go on tamoxifen.  So I went ahead with the radiation.  Before my treatments were completed, I discovered a lump in my right breast.  I went back to my BS he couldn't feel the lump.  I went back to BS in 9/08 for follow up of left, he now could feel the lump in the right, I had a lumpectomy in 10/08, which came back as adenosis.  In December 08 I discovered 2 more lumps (1-above my scar site and 1 on the outer toward my armpit) in my right breast, just saw my OBGYN and she can feel the 2 also, she sent me back to BS, he can't feel them.  He's sending me for ultrasound.  What if they don't show on ultrasound?  What do I do now?  I'm tempted to opt for BLM??????

  • seltzer
    seltzer Member Posts: 68
    edited February 2009

    Your lumpectomy report is a lot like mine.  Also mine says multifocal, and ductal extension.  Have you been able to find any resources for understanding each of the elements beyond LCIS.

    Mine also said Lobular neoplasia I and II.  My impression from all the testing I had was that they really can't tell much from ultrasounds, they just pursue biopsies based on calcifications, etc.

    I have so much in the way of hard lumps from needle biopsies in both breasts and from the lumpectomy I worry that I would never be able to tell what isgoing on, and my breasts are already very hard to read.  So I am thinking of PBLM.

    My surgeon has referred me to a genetic counselor and the plastic surgeon, but not the oncologist yet.  Should I ask to see one?  I am at USC/Norris hospital, and the care seems good, I am grateful to the radiologist who pursued things on the mammo very actively, but procedurally I am not sure what is the surgeon's domain and what is the oncologist's.

    Good luck and let me know how the ultrasound went.  

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2009

    Seltser---definitely get an oncologist on board.  Although breast surgeons may be great at breast surgery, they are not specialists in cancer--oncologists are. An Oncologist can give you your overall risks of invasive bc based on all your individual risk factors (although it is tricky with LCIS since they don't know exactly how much it truly increases your risk), and the risks and benfits of  preventative medications such as tamoxifen and Evista. There is no rush with LCIS since it is non-invasive, so you have time to research and get 2nd opinions it you want before making any decisions on surgery or medications.

    Anne

  • leaf
    leaf Member Posts: 8,188
    edited February 2009

    At some places (like the major institution I visited for a 2nd consult about my LCIS), the breast surgeon is the one who prescribes tamoxifen.

    But I completely agree with Anne, I think that  oncologists are trained much more throughly  than breast surgeons in the side effects of anti-hormonals.  Most surgeons do not have a lot of expertise in medications that are not used in the surgical process.

    As Anne said, there is no rush to this.  You have time to research and to get as many 2nd opinions as you need before you come to the decision that is right for you.

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