LCIS + excision

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    Lay--the studies show that the risk with LCIS remains elevated (for 15 to 20 years) rather than decreasing over time as with DCIS or invasive bc. Personally, I  have done very well these past 5 years since my diagnosis of LCIS. I have just under 2 weeks left to go to finish up my 5 years of tamoxifen. After a short break of about 2 months, I will be starting Evista for further prevention. A friend of mine was diagnosed initially with LCIS, was not even offered tamox, and was diagnosed with ILC and IDC within 4 years.  She said she was so glad that I was "doing something proactive" in trying to prevent an invasive bc in my future.

    Anne

  • leaf
    leaf Member Posts: 8,188
    edited April 2011

    I don't know where the Mayo got this information, either.

    AWB- this study found a synergistic effect between LCIS, family history, (and ADH.) I don't know the numbers though...

    http://www.ncbi.nlm.nih.gov/pubmed/16978952

    This paper found " The incidence of IBC increased over time from diagnosis of LCIS, with 7.1% +/- 0.5% incidence of IBC at 10 years" http://www.ncbi.nlm.nih.gov/pubmed/16110014

    This paper found "The cumulative 5- and 10-year probabilities of being diagnosed with a contralateral breast cancer among women initially diagnosed with a lobular breast carcinoma in situ (LCIS) were 11.9% (95% confidence interval, 9.5-14.3%) and 13.9% (95% confidence interval, 11.0-16.8%), respectively." http://www.ncbi.nlm.nih.gov/pubmed/14659121

    This study found a constant risk. "CONCLUSIONS: LCIS appears to confer a persistent, increased risk of subsequent breast carcinoma that does not appear to decrease over time."http://www.ncbi.nlm.nih.gov/pubmed/11550142

    So, again, we have inconsistent studies.  I don't know how big the studies were, either.

  • Lay02
    Lay02 Member Posts: 23
    edited October 2008

    I have LCIS and ADH and in March, 09 I will go for a 6 months follow-up and am considering removing my uterus and ovaries so I do not want to worry about my hormones anymore. Then, I may have to take aromatase inhibitors. I can't keep thinking about my situation all the time.

  • liveit56
    liveit56 Member Posts: 196
    edited October 2008

    Kimber, that is OK...you are aloud to have bad days.

    I hope you are having a better day.

    I am just trying to understand all of this and hope I make the right decisions like everyone else.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    Lay02---I had to have a TAH/BSO about 3.5 years ago--I still take tamox as estrogen is still produced in the adrenal glands, skin and fat. The AIs have not yet been approved for use with LCIS--just tamox (pre and post meno) or Evista (post meno). I have about 1 more week to go to finish up my 5 years of tamox, then I will start on Evista after a short break.

    Anne

  • TOOTSIETLC
    TOOTSIETLC Member Posts: 7
    edited January 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 was 38 then, 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.  In June I went 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??????

  • PSK07
    PSK07 Member Posts: 781
    edited January 2009

    Radiation for LCIS or any precancerous condition is unusual (DCIS isn't considered precancer). 

    Have they done a mammogram?  Digital?  If the lumps don't show with ultrasound, will they consider an MRI?  It's possible that it is all scar tissue or other tissue changes associated with radiation. If you do get an MRI, make sure that it is performed 5-10 days from the start of your cycle to help eliminate odd results.

    Hope you get some answers.

  • TOOTSIETLC
    TOOTSIETLC Member Posts: 7
    edited January 2009

    But the new lumps are in the opposite breast of the one which had radiation.

  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited January 2009

    TootsieTLC - I would agree w/ Pam. If the digital mammo and US don't get to the bottom of your lump, then ask for an MRI. The MRI is bilateral and should tell the doctors if there is any reason for concern. A BMx is always a consideration, but you don't need to go there yet. Wait for the results from this testing. Feel free to PM me if you want to ask about the Mx. I chose that route, but I am older and had other considerations as well. It is not for everyone, but certainly not that big a deal (really) if that is what is offered. I am 6 weeks out and have not had one bit of regret! Best wishes and make sure to let us know what you find out! - Jean

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

    Tootsie--I would ask about an MRI.  Radiation is generally not done for LCIS---did you have DCIS as well?

    Anne

  • PSK07
    PSK07 Member Posts: 781
    edited January 2009

    Sorry, Tootsie. Didn't notice the other breast part.

    The MRI advice still holds. They're always bi-lateral and usually approved (although not always) for diagnostic purposes. I guess if all else fails, there's the excisional biopsy route.

    hope this gets cleared up.

  • chaos
    chaos Member Posts: 7
    edited March 2009

    I have/had LCIS and ADH, and my recommendation is to question carefully what your surgeon and oncologist tell you. The first surgeon I saw recommended a full masectomy and radiation and told me, "This is what I would recommend to my mother, honey." I just about bitch-slapped him. Instead, we sat down and exchanged scientific papers in the most ridiculous doctor's visit I've ever had -- "I'll see you that 2003 study and raise your offer with a 2004 study with a higher sample size." I fought with my medical center until they passed me up to the head of surgery, who was great -- he basically said that he would recommend exision only but I could "cowboy it out" too. I signed up on the spot, and he did a generous exision/lumpectomy which did find more than what the needle biopsy had removed. I'm glad I did it, even though I now have 7/8 of a breast on one side.

    I was worried about the tamoxifen, but the oncologist was delighted to be challenged about pros and cons too. He convinced me, so I'm on it -- as he said, try it out, if you don't like it, you can stop taking it. So far, so good!

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