the younger side of LCIS

kocco24
kocco24 Member Posts: 1
edited June 2014 in LCIS (Lobular Carcinoma In Situ)

I was recently diagnosed with LCIS and have my first surgical consult this coming Monday. I guess I fall in the 10% diagnosed under 40, I'm 30. II feel like there is no one to talk to in a similar situation. Even the "Breast Center" at my hospital caters mostly to women who are 50+.

I'm super overwhelmed with information and I feel like the people in charge of patient advocacy don't care about my case. Is there anyone out there going thru similar issues? If so, what treatment route have you chosen and why?

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  • adedf659
    adedf659 Member Posts: 2
    edited March 2013

    I'm "older", diagnosed at 48 last spring but I think maybe the situation you feel like you are in isn't as much about age as it is the fact that LCIS is a much more uncommon diagnosis than DCIS or invasive cancer. I'm not sure what treatment options you are expecting for LCIS. I have been led to believe that aside from possibly Tamoxifen and mammogram/ultrasounds every six months, surgery isn't normally indicated.

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2013

    kocco, you can connect with many younger women in the Young with Breast Cancer forum here on Breastcancer.org.

    There's also more information about LCIS, its treatment and follow-up care, in this section from the main Breastcancer.org site.

    • The Mods

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2013

    kocco---I'm sorry that you are having to deal with this at such a young age.  I was 46 when diagnosed with LCIS and my risk is further elevated by my mom's ILC. Even with that combination, all my docs felt bilat mastectomies too drastic and not medically necessary. So I have been doing high risk surveillance for over 9 years now---alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months and fortunately have not needed any further biopsies or lumpectomies since my originally ones.  I took tamoxifen for 5 years and now I take evista. be sure to get a yearly transvaginal US if you do decide to take tamoxifen to monitor both the uterine lining and the ovaries.

    anne

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  • auntiems3
    auntiems3 Member Posts: 67
    edited March 2013

    kocco-I am so sorry to hear you are going through such a scary time.  What I would like to say first off is that you are headed in the right direction....seeing a surgeon.  Hopefully one who specializes in breast cancer.

    Second- just BREATHE.....most of us with an LCIS dx have gone through exactly what you are now, and from what I see and what I have learned about LCIS is that it is not something you need to act upon immediately.   Take time to educate yourself.  You found this board which has loads of information.

    #3 -Personally, and as an older LCIS pt.....I was dx'd when I was 49.  I have had 4 bx...3 with LCIS.  I did the 6 month surveillence for 5 years until last summer.  I don't know what changed in me.  Maybe being older and realizing that my attachment to my family was stronger than my attachment to my breasts.  They were a lot of fun for a long time, but now, when I look at them, I feel ambivalent.  Last year, I made the decision to have a skin/nipple sparing PBMX with TE reconstruction.  I am scheduled for surgery on May 15th.

    My advice would be to take one step at a time.  Being so young, you shouldn't make any hasty decisions.  There are many options available to you, and many caring individuals who are willing to share their knowledge, stories, and strength.

    Best, Marie

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  • Rshep9101
    Rshep9101 Member Posts: 69
    edited March 2013

    Koko,

    I completely understand, though I do not have LCIS.  I was diagnosed with ALH when I was 30(now 33).  I had my first mammo, ultrasound, and then two biopsies.  They found the ALH after the first biopsy.  It is so hard to go to the diagnostic center and my surgeon's office, look around and see no one your age.  Everyone is so much older and at a different place in life.  After my initial diagnosis I scoured the web trying to find information about young women and breast cancer/precancerous conditions.  There was very little information and very few stories that I could relate to.  I recently read the book "Previvors".  It is about 5 women who are younger(not 30's but 40's) who were very high risk.  There are issues that are more specific to a younger woman dealing with these conditions like breast density, aesthetic appearance-scarring from biopsies and surgeries, breastfeeding, etc.  That said...no matter the age the disease and the fear are common threads among all of us. 

    I have been dealing and living with my diagnosis for 2 1/2 years now.  It is difficult but manageable.  For me the primary key has been to have great dr. with whom you are comfortable communicating with regularly.  My dr. has made all the difference.  She is very holistic ( considers the whole body)for a  breast surgeon and since I am a Nutrition major that is important to me.  You really have to trust your Dr.  It is also important to find your own since of control.  For me fighting back is something I do when I exercise, insist on meat & dairy with no added hormones, eat tons of veggies, or refuse fast food.  People assume I am just a health nut or consumed with appearances but I am fighting for my future.  I  fight my odds by focusing on what I can control without obsessing.  It's tricky.  If you have any questions I would be happy to answer them.  If you find any good books or sites please let me know :)  You are not alone

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