What Questions Should I Ask

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Breyonna
Breyonna Member Posts: 18
edited June 2014 in LCIS (Lobular Carcinoma In Situ)

I was just diagnosed with LCIS.  And I'm trying to decide what is the best aftercare for myself.  What questions should I ask my doctor?  Then is the second lump in the same breast within two years that he as removed.  This time the lump was about an inch long.  But I do remember him telling me that the LCIS was found inside the lump.  He really didn't give me a lot of information to make and informed decision, but I will be meeting with him on the 24th of May to attempt to find out more.  And are there other alternative beside the tamoxfin, monintoring, and mastectomy?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2011

    breyonna---those are the 3 standard options with a diagnosis of LCIS. I was diagnosed nearly 8 years ago and my risk is further elevated by my mom's history of ILC. Even with that combination, none of my physicians recommended BPMs. I took tamoxifen for 5 years, have been now taking evista for over 2 years for further prevention, and continue with high risk surveillance of alternating mamos and MRIs every 6 months with breast exams on the oppostie 6 months. Not the option for everyone, but works well for me. That's the thing with LCIS----you will get alot of opinions ( there is a lot of controversy with LCIS), but you have to ultimately make the decisions that will be right for you and your situation. But don't let anyone rush you--since LCIS is non-invasive, there is no rush, you can take whatever time you need to decide.

    Anne 

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  • Breyonna
    Breyonna Member Posts: 18
    edited May 2011

    Thank you this was very helpful.  I really don't know alot about LCIS.  What is BPM?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2011

    BPMs====bilateral prophylactic mastectomies

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

    Get a written copy of your pathology report (if you don't have it already).  That is the best chance to know if your LCIS is classic or pleomorphic.  You may (or may not) want to do different things if it is classic or pleomorphic LCIS.  (There is even more controversy about pleomorphic LCIS, but it may be more aggressive than classic LCIS.)

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  • Breyonna
    Breyonna Member Posts: 18
    edited May 2011

    I thank you ladies so much you have been so helpful.  I feel blessed to be able to speak with others that can guide me through this part of my journey in life.  Please whatever information you can assist me with would be helpful.  Also does this cause spuratic pain in the breast. It feels like a sharp knife is cuting me.

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

    I'm sorry you are going through pain.  No, LCIS should not cause pain.  Breast pain is rarely a symptom of anything serious.

    Did you have a breast excision?  After my breast excision, I had 'shooting'  or 'zinging' pains in my breast every so often for many months.  It was from nerves getting cut where the did the surgery.  Some women have these kinds of pain after a core biopsy, too.  If its red and tender, it could also be a sign of infection.

    Chronic breast pain is called mastalgia.  Here's a blurb from the Mayo clinic about fibrocystic breasts, which are a common cause of breast pain.http://www.mayoclinic.org/fibrocystic-breast/

    Its good to tell your doc about all of your symptoms concerning your breasts.

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  • Breyonna
    Breyonna Member Posts: 18
    edited May 2011

    Yes, so far I have had two lumps removed from the same breast.  The reason I went in the second time was because there was a lump and the pain was in the exact same spot.  You are probably correct the pain is just all over in the breast.  I just had surgey on April 28th.

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

    Your breast pain may have multiple causes, but I've never heard of LCIS itself causing breast pain.  Sometimes they can't find a cause for breast pain, but its good to let your doc know about it when you see him/her.

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  • Breyonna
    Breyonna Member Posts: 18
    edited May 2011

    What does this mean?

    margins:  Focally positive from the path report?

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  • leaf
    leaf Member Posts: 8,188
    edited May 2011
    If its referring to LCIS, then it means they found LCIS at the edges of your sample, so you almost certainly have some LCIS left in your breast.  Unlike in DCIS, this is nothing additional to worry about.  LCIS is usually multifocal, meaning there are many spots of it in a breast, and usually spots of LCIS are found in both breasts.  They know this because they used to often do bilateral mastectomies for classic LCIS, and that's what they found in the mastectomy specimens.
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  • Breyonna
    Breyonna Member Posts: 18
    edited May 2011

    WOW,

      You are such a great source of information.  Thank you for putting my mind at ease.

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  • Breyonna
    Breyonna Member Posts: 18
    edited May 2011

    OK,  Can anyone help me understand what this means?

    This is my diagnois:

    Right Breat mass, excision

    -Nodular sclerosing adenosis with microcalcifications extensive

    -Lobular carcinoma in situ, nuclear grade 1, involving the sclerosing adenosis

    -Margins:  Focally positive Cassette #2B

    Comment:  The mass lesion is a florid nodular sclerosing adenosis.   Two sections submitted as #4 and #2B show an area of lobular carinoma in situ in the sclerosing adenosis with involvement of the terminal duct.  E-Cadherin immunostain support the diagnosis of LCIS.  Immuostains for calponin and smooth muscle actin show presence of myoepithelial components in the sclerosing adenosis throughout. 

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

    Sounds somewhat similar to my pathology report, however, I didn't have any lumps. I have sclerosing adenosis too (though not nodular). 

    Sclerosing adenosis http://www.pathologyoutlines.com/topic/breastsclerosingadenosis.html.  Note when they talk about increased risk, LCIS by itself increases risk about 7-10 times that of a woman with NO obvious risk factor (besides being a woman), which is about 3-5%.  So an increase of 2x is 2x 3-5%=6-10% which is peanuts in this scenario.  We also don't know if these risk factors are additive; I would guess they aren't additive.

    E-Cadherin is a type of surface protein that makes cells adhere together (like velcro), and almost all lobular carcinomas  and LCIS are E-cadherin negative.  Ductal carcinomas usually have some degree of E-cadherin positivity.  Lobular carcinomas tend to look like sheets, as opposed to ductal carcinomas which tend to form 'lumps', and this may relate in part to the presence  or absence of E-cadherin.

    Grading comes in nuclear grades 1,2, and 3; 1 is the best grade to have and is closest to 'normal'.http://www.breast-cancer.ca/staging/lobularcarcinoma-classification.htm

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