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mabear
mabear Member Posts: 25
edited June 2014 in LCIS (Lobular Carcinoma In Situ)

Hello to all-sorry to meet you like this but selfishly thankful you are here :-)  I was recently dx LCIS, ADH (stereoscopic bx); sclerosing adenosis dx from 7 years ago still present.  Excisional bx shows no malignancy.

I have no 1st degree family hx but have strong paternal family hx of breast cancer.  I've just had genetic testing and am waiting for results.  I meet with an oncologist and breast surgeon this week for discussion of PBM (which I would rather call risk reduction BM!). 

I guess I'm somewhat prepared for fluctuating opinions from my appointments, since I was not even told by the surgeon (who did the excision) that I even had the LCIS dx on the stereoscopic.  I found out after the excisional bx when I called for those results...  I now have hard copies of my path reports.  They weren't going to refer me for any additional treatment until I demaded it-scary to me.

Met with my family Dr and she is very supportive of my decision.  I'm 41 and have a husband and an 8 year old daughter.  I find it very challenging explaining this dx to family/friends; not so much the definition, but as to where I fall in the 'do you have breast cancer?' question.  I understand the varied professional opinions although I feel it makes an already challenging situation worse.  How do you reach out for support when technically you don't have breast cancer?

Know that I am thankful I don't have a more serious dx and I see this as an opportunity to make a personal choice that's right for me-just hoping to find the encouragement I need from people that understand...that's why I'm here :-)

Thank you!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2010

    I sent you a PM.

    anne

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  • upcreek
    upcreek Member Posts: 203
    edited April 2010

    I sent you a PM

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  • bschwa
    bschwa Member Posts: 6
    edited April 2010

    I sent you a PM

    Beth

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2010

    mabear, so sorry you have found yourself here, but you have come to a great place, with alot of very knowledgeable and compassionate women.  I was in a very similiar situation to you, exactly 1 year ago.  I had 1st mammogram in February, special views in March and then my story goes on from there. Initially I also was diagnosed with ALH (atypical lobular hyperplasia) on stereotactic biopsy. Then LCIS on excisional biopsy.   The views and opinions of the many different doctors I happened to see at the time were all over the map.  I was told, LCIS is not breast cancer and it is not even a precursor to breast cancer, come back and see me in 1 year. Yet another doctor called me to come in to see her in her office at 4:30 in the afternoon for an appointment at 6:00pm and to bring a family member with me. I too was told I don't need to even see an oncologist by one doctor, and thank goodness for the other doctor who though I should.

    Anyway when all is said and done, I am 2 months post op from a bilateral mastectomy, because I eventually was diagnosed with an invasive breast cancer(PILC), as well as another in situ breast cancer (PLCIS). I don't want to frighten you, but I do think that LCIS needs to be taken more seriously than some doctors seem to take it.  At least in my case, LCIS did in fact turn out to be a huge red flag that there was alot more going on. I think some of the doctors that I have seen, now see it differently.

    It is a really good idea that you are going to an oncologist as well that you have copies of your pathology reports.

    Good luck with your appointment and let us know how you make out.

    Take Care

    Cathy

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  • mabear
    mabear Member Posts: 25
    edited April 2010

    Cathy thank you for your story.  I hope you are doing well and will keep you in my prayers :-)  I will keep you and others posted on this long, turbulent journey!  So glad to have met such compassionate people here :-)

     Mabear

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  • mabear
    mabear Member Posts: 25
    edited April 2010

    Have an appointment with another breast surgeon tomorrow; please wish me luck as the first breast surgeon I saw was, how do I say, very against BPM for this condition to say the least.  This visit is with the surgeon who did my biopsy (there are only 5 to choose from in my ins. plan).

     About 1 1/2 weeks ago my husband noticed a couple more lumps...most likely cysts I think.  Family Dr. set up an MRI for the 22nd.  Guess I'm glad for that (aside from being very claustrophobic!!) to possibly know if there's anything else going on.  Meet with oncology again next week-he is very nice.

     I'm tired...tired of waiting for more tests, tired of waiting for results but mostly tired of waiting for others to decide IF I can proceed in the future with my choices...

    Have been keeping my chin up mostly, but am wearing down a bit lately.  Need support-both here and in the medical community :-)

     Thanks for reading and 'listening' :-)

    Mabear 

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  • cornellalum
    cornellalum Member Posts: 191
    edited April 2010

    mabear - we all know the feeling of waiting, and waiting. It is so hard.  We have all suffered through the waiting game.  And it is even harder with a diagnosis of LCIS because there is a lot of controversy about what to do.  But you will make it through all of this.  Keep on with your education about LCIS, and don't let anyone make decisions for you. It sounds like you are lucky enough to have a husband who is there for you.  I was also lucky that my husband has been my rock through my journey. 

    Please know that we are here for you.  Let us know what you find out.  We care, and we are thinking of you.

    Chris

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  • mabear
    mabear Member Posts: 25
    edited April 2010

    Thank you Chris for your kind words :-)  I do have a wonderful husband-I am very thankful for him!  He was with me today at the surgeon's office. 

    Things went so smoothly this time-I am so relieved.  I have surgery scheduled for the beginning of May.  The surgeon and the oncologist are taking care of  contacting my insurance.  I can breathe easier now and plan my life being that I know when things are happening. 

    Have been reading the 'Positive Results' book that someone recommended...it was very helpful for me.  So has posting/reading here.  Thank you all so much :-)

    Mabear

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  • MistyJ
    MistyJ Member Posts: 113
    edited April 2010

     Mabear,

    So glad you had a good result with the surgeon!  Makes all the difference in the world!  Here is hoping all goes well with your insurance ( I am hoping now that mine will be covered, have not set date yet so no preauthorization done yet).  And good luck with your surgery!!   What are you doing for reconstruction?

    MistyJ

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  • mabear
    mabear Member Posts: 25
    edited April 2010

    MistyJ-just read your post on another thread-felt like I could have written part of it!!  I agree with your thoughts/feelings on being at peace with surgery.  I have said to family/friends that although this is not a vacation, I do feel it is a gift...how many people get to have a choice before possibly having invasive breast cancer?  I'm thankful I do :-)

    The surgeon performing the surgery said insurance shouldn't be a problem, that PBM is a medical  option for LCIS and insurance shouldn't even be questioning it.  That is what I had thought in the beginning before my ins. started hassling me-probably someone just needs to be 'educated' in this dx.  

    As far as reconstruction goes, I do not plan on having any.  I am a small person so I don't believe it will be that noticeable, plus I don't want any additional surgery or possible complications.  Everyone is different and I'm glad there are so many options for women out there.  I've researched prostheses but I'm not sure if I'd be comfortable with that either...

    I'm glad reconstruction options can be done at a later date, but for me I'd be surprised if I changed my mind down the road...just happy to be as free as I can of any more tests, biopsies and worry :-)

    The best to you!

    Mabear

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  • MistyJ
    MistyJ Member Posts: 113
    edited April 2010

    Mabear,

    When in May is your surgery??

    MistyJ

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  • mabear
    mabear Member Posts: 25
    edited April 2010

    MistyJ:

    Monday, May 3 is my surgery...coming soon.  The more it approaches the more at peace I am.  I've been spending time decluttering/cleaning, making meals and lists of the things I need to pick up yet.  Purchased the little 'pouches' to attach to whatever bra/bandage the hospital supplies to hold the drains afterward.

    I think I will have the hardest time with the drains-the knowledge of 'something' in me. I'm so glad they are temporary!!

    By the way, isurance didn't question the procedure/dx once the surgeon's office worked with them. (Next time I won't be so 'responsible' contacting insurance on my own-I was actually trying to make sure thay had all the info they needed to determine coverage...for the future I'll let the offices with 'pull' do the work!!!!)

    Also, I contacted a breast cancer support group in my area.  I got the courage to ask the coordinator if I could even attend, given that I don't actually have breast cancer...(this was hard for me as I have struggled with this-have felt alone and lost in the middle between 'real' breast cancer and other people with 'normal' breasts).  I was welcomed warmly :-)

     What are your future plans??  Any decisions on reconstruction for you??  Good luck with everything!!

    Mabear

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  • MistyJ
    MistyJ Member Posts: 113
    edited April 2010

    mabear,

     Thinking about you!  I will be throughout the weekend and Monday!  Sending you vibes of strength!  My friend had a breast reduction done a few years ago, and I asked her about the drains.  She says (and she would tell me the truth) that they do not hurt.  They are weird, but no pain really even when they take them out.  I am glad you are at peace, and GOOD for you calling the breast cancer support group!  I am so glad they were welcoming!!! 

    I spoke with the Plastic Surgeon's nurse/manager yesterday and feel so much better!  He has  completed his written boards for plastic (he is only certified in general now), and is compiling his cases for presentation for the other part.  He has done 300 surgeries in the last 9 months and 2/3 of them have been breast.  He specializes in the DIEP and the Alloderm with implants.  He has done a 2 year fellowship under the main surgeon who has a tremendous amt. of experience.  I am going in on the 17th of May to look at the implant sizes and pictures to finalize the size I want to be.  They will try to do the one step implant with Alloderm, but he did say that my general surgeon tends to leave him less skin to work with usually.  Which I am ok with because I would rather he is more careful and gets everything he can out.  If the PS does not have enough skin to take me to a C, then I will have TE's.  I feel very very at peace with it all now. I have made alot of laughs and jokes about it all with my daughters.  I have explained it to them as a gift to be able to do all I can to prevent cancer, and we laugh about "gummi bears" and "foobs" and nipples falling off......weird I know but by making it light enough to laugh about I think I am helping them not be scared.  My husband I think is more worried, but all I can do is maintain a positive attitude and heal quickly ;).  I have a cousin who is my age (36) who has been battling colon cancer and the after effects for the last year.  I look at her and think of my sister and all we saw her go through and I have absolutely no doubts.  No matter what the future holds, I will know i have done all that is in my power to prevent myself from going through that.  And that is okay with me.  I hope you can keep your peace throughout the weekend, and not worry too much.  MistyJ

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