30 and Diagnosed with LCIS, any one out there close in age?

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aquariusgi
aquariusgi Member Posts: 26
edited June 2014 in LCIS (Lobular Carcinoma In Situ)

I'm a 30 year old single mom of a 4 year old recently diagnosed with LCIS. My mother also passed of breast cancer which doesn't help my chances. I've always had this fear of breast cancer in the back of my head, but I didn't think it would come this soon. I've had 2 biopsies. The lump is out. I've done plenty of research on my own before meeting with an "treatment" oncologist to know that I don't like any of my options. My surgeon told be post surgery that I won't need any more operations, chemo or radiation? Although, I've read those are all possibilites. She did suggest hormone therapy. Most of all I have noticed that there isn't very much information on pre-menopausal women in their late 20's and early 30's with LCIS to go on. I'm feeling kind of lost in terms of treatment. Anyone else out there close to my age or have the same kind of experience.

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited October 2008

    Bumping this up for aquariusgi.
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  • Misty3
    Misty3 Member Posts: 154
    edited October 2008

    Welcome Aquaiusgi,  I am not answering your question based on age since I am in my 40's--a more typical age for LCIS diagnosis.  Just wanted to welcome you and make a comment on your post.

    LCIS is not cancer ( although you will see it listed under stage 0, in situ, precancer category which is confusing )  LCIS is generally not considered a precancer. LCIS is considered a marker for increased risk of developing invasive cancer in the future.  In otherwords, LCIS is a risk factor for breast cancer.  There are studies and ongoing research looking at the possibility that a subset of LCIS lesions may actually be precursors for invasive lobular breast cancer but this is a small number of cases.  Remember, most women with LCIS will NOT develop breast cancer at all.

    Your surgeon is correct that you will NOT require chemotherapy or radiation--this is not appropriate in the treatment of LCIS if LCIS is the most significant pathology seen on your biopsy.  You will be offered Tamoxifen for 5 years--this is fairly standard.

    I hope you find some other women your own age--I know it helps to share experiences with people in similar life stages.  You will get lots of support here.

    There is another web site started by a young woman with cancer full of young cancer patient with forums on breast cancer and Tamoxifen to name a few--you might like it:

    http://my.crazysexylife.com/

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  • aquariusgi
    aquariusgi Member Posts: 26
    edited October 2008

    Thank you for responding. This was my first post in search for others with my diagnosis. After 4 hours online I actually found plenty of others experiencing much worse at a younger age. It's unfortunate that there should be some many diagnosed at all and at such an early age. I am grateful I was able to get this far in life without interuptions.....and now for my journey.  

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  • NY10528
    NY10528 Member Posts: 2
    edited November 2008

    Hello aquariusgi, I was diagnosed with LCIS this past May a couple of weeks after turning 34. I just had my routine mammo and bilateral ultrasound (as I also have intraductal papillomas on both breasts) ... I'm due to get my results tomorrow so I'm attempting to stay positive but it's extremelly difficult at times!!! But I have to pull my act together, I have 8 people coming over for thanksgiving and takeout is not an option!!! Best of luck to you :)

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  • aquariusgi
    aquariusgi Member Posts: 26
    edited November 2008

    Ok....After stressing about by having my MRI on 11/19/08 and genetic testing/2nd opinion on 11/25/08, I've learned than I have at least a couple of more weeks of stressing and a lot of uncertaintly as to what I should do next. There are 2 areas of significance (1 which we hope is the incision site that also seems to absorb the dye??) that they would like an ultrsound done on (scheduled for 12/1/08) AND 2 doctors with different reasons to postpone Tamoxifen. One says I should be sure of my family planning status the other says I should wait because I'm only 30 and wouldn't get the full benefit of the drug. I don't feel comfortable waiting...Actually, I feel like a walking timebomb!

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  • aquariusgi
    aquariusgi Member Posts: 26
    edited November 2008

    Thank you for sharing in my anxiousness NY10528.  I don't mean that to be funny. But I do appreciate people reaching out when my situation isn't as bad as others. The stress is overwhelming!

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  • karen9516
    karen9516 Member Posts: 155
    edited December 2008

    I am 44 and after multiple benign tumors my most recent biopsy revealed LCIS or atypical lobular hyperplasia. It isn' stage 0 cancer it is like getting and abnormal pap smear.It does however increase your risk up to 40% chance in a lifetime. I had multiple cysts and fibrous tissue and it was impossible to examine myself. My breast surgeon talked to me about a bilateral skinsparing nipplesparing mastectomy. She spoke to other surgeons and they all agreed that for what I had it was a safe option. I had the surgery on nov 19 and I am doing great. My breasts look better than they did before surgery!  I have expanders in. The ps planned to put those in not knowing what she would have to work with after the surgeon was done. She did get enough saline in the implants so I don't need any fills! I have to wear them for 4 total months and they are a little uncomfortable but tolerable.I will then have the permanent implants placed in an outpatient surgery. I know you are a lot younger than I am but I am so glad I did this. I am healthy and in good physical shape and I have a great attitude about the whole thing. I feel so blessed I could choose this instead of being told I had to do it and I would also need chemo and radiation. Have you spoken to a genetic counselor about getting the gene test since your mom had it as well?

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  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited December 2008

    Karen - Sounds like we received the same recommendation for essentially the same reasons. My oncologist strongly suggested the BM route - so I am going in for my surgery on Tuesday. Thanks for the upbeat posting. As you might guess, this is where my mind is at today. Best wishes. - Jean

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  • karen9516
    karen9516 Member Posts: 155
    edited December 2008

    Jean- You are in my prayers. You will do fine! Keep a positive attitude and do whatever the doctors say to do. I hope you have plenty of help the first couple of days I don't have any little kids at home so that helped. Do the exercises they help but don't overdo it! Best wishes to you too! Karen

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  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited December 2008

    Thanks Karen. No kids here as well - they are all grown. I plan to take it easy. - Jean

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

    Jean---will be thinking of you on Tues and praying that all goes well and that you have a speedy recovery.

    Anne

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  • chris38
    chris38 Member Posts: 32
    edited January 2009

    Hi,  My name is Christine.  I am 38 and so scared.  My path report came back that I have LCIS and ADH in my left breast.  They have been following my left breast for two years prior to this news because i had califications in that breast.  I have a 7 and a 5 year old and i am freaking out with this, trying to keep it together for them and my husband but inside i am falling apart.  I have no fam hx of BC but that means nothing.  I have not seen a BC surgean yet, i just got the news a week ago.  Please keep in touch and tell me what you know.

    Sincerly,

    Chris38

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

    Chris38 - The biggest problem w/ LCIS is the different approaches to treatment you will receive. The best part is that you don't need to do anything quickly. There are three approaches to dealing w/ this dx:

    1. CLose monitoring

    2. Close monitoring plus tamoxofin

    3. Bilateral mastectomy (preophylactic).

     I think most ladies chose the first or the second. Listen to your doctors, ask questions, read the posts on this forum and then chose a direction. If you chose the first or the second, you can always move to the third option in the future.

    I chose the third because I just could not take the close monitoring and frequent bx's - but that's just me. In some ways this is a good dx, at least now you will be watched very closely. Best wishes. - Jean

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  • TOOTSIETLC
    TOOTSIETLC Member Posts: 7
    edited January 2009

    I'm just sharing, sorry I don't know if it helps. I was 38 when I had a lumpectomy which had been there since I had my son 2 years prior, dx:  LCIS sclerosing adenosis and intraductal hyperplasia, oncologist recommended tamoxifen and radiation, I want another child, so I chose only radiation.  Not to sound scary but a lump was then found in my right breast, had lumpectomy, came back adenosis.  3 months later I feel 2 more lumps (1 above scar site and 1 on outside near armpit), which my OBGYN also feels.  Went back to surgeon he does not feel them, I'm going for mammo & ultrasound today.  Then to see surgeon again.  I feel like a time bomb since I've heard and read LCIS in one breast usually occurs in other breast also, or further advanced stage.  What to do??????  It is scary.  Good luck to you.

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  • TOOTSIETLC
    TOOTSIETLC Member Posts: 7
    edited January 2009

    I also have a 3 year old, so I know it makes it crazy.

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

    TootsieTLC - I am so very sorry about your lumps. How soon do you get yoru results from the mammo and US? I hope today! Please let us know how things go and know that you are in our throughts! Here's sending you B9 results!!!!!!!!!!!!! - Jean

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  • hope09
    hope09 Member Posts: 27
    edited February 2009

    Hi this is Hope09, Has any of the syptoms that you ladies have had with LCIS, been thickening in the breast tissue or pain in the breast. I had a mammo and ultrasound and came up thickening inthe left breast. The pain has not gone away , and at times feels like someone is stabbing me. I go to see a breast surgeon soon and dont want them to turn me away. Not sure if it is IBC or LCIS or neither, but I am sick of being in pain. Primary care doc wants a biopsy done but thats notto say a surgeon will want to do the same. Any info  would be greatly appreciated. thanks Hope09

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

    I didn't have any symptoms with my LCIS.  It was found on a routine mammo as suspicious microcalcifications and then confirmed by a lumpectomy. Were your mammo and US clear? I have thickening now, but nothing shows up on mammo, US or MRI.

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

    Hope - I had thickening in the breast where the LCIS was first found. Hope this helps. - Jean

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  • TOOTSIETLC
    TOOTSIETLC Member Posts: 7
    edited February 2009

    Hi hope09, I too have pain where I had LCIS and a thickening, sometimes it's a constant pain through entire breast for days or weeks and so sensitive.  My Dr's tell me I shouldn't be having pain anymore, and they can't explain why I do, so really no answers or help.  Sorry, I'm probably not helping either, but  just letting you know, I too have pain.  I'm also trying different Dr.s.  Good luck, hope you feel better soon.

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  • hope09
    hope09 Member Posts: 27
    edited February 2009

    Thank you ladies for rhe info. I called surgeon again today and no cancellations, still have to wait until Feb 25. My options are limited because I have insurance through the state of PA, and only want to go to a breast surgeon. It seems like forever when waiting for answers. Thanks My thoughts are with you all. We might as well fight this disease toether. Hope09

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  • aquariusgi
    aquariusgi Member Posts: 26
    edited February 2009

    Funny you ask...I haven't logged on for a while because I'm trying to get past that portion of my life. I had a lumpectomy (stage 0) changed my lifestyle eating habits drastically so it's not like I can forget  about it. Since the surgery I've still experienced random pains and occasional soreness in the same breast I have my surgery. I even searched for phantom pains on the net. It wasn't much help. With the scar tissue left over I don't know what I'm feeling. I don't want to seem paranoid since it hasn't been 3 months since my last MRI & ultrasound but I'm kinda getting scared again. My next physical breast exam is in March. I told her I would rather her chek just to be sure. 

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