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  • mtlion322
    mtlion322 Member Posts: 29
    edited August 2007
    Marsha, glad to hear your prayers were answered! Being your own advocate really does work!

    CONGRAULATIONS!!!!!!!!!!!
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  • Marple
    Marple Member Posts: 19,143
    edited March 2014

    Hey Marsha, I've been wondering how you are doing and have been reading these posts. I'm so sorry you've been having such a difficult time with your surgeon and am so happy for you that a date has been set with a new surgeon. Miss you on the chat. Sending you lots of hugs. Sharon51 (a.k.a. Sharon50)

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  • nagem
    nagem Member Posts: 353
    edited August 2007

    Good for you! I took the same path. Don't know what your reconstruction plan is, but if you're considering NOT having reconstruction, be sure to check out breastfree.org, a site created by a breastcancer.org member. It has a lot of personal stories, photos, postsurgical suggestions. It will soon have advice on prostheses, lingerie, exercise, etc.

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  • Lynn12
    Lynn12 Member Posts: 1,008
    edited August 2007
    Oh Marsha, I'm so happy for you!!!! YAY! I'm so glad you pursued this until you got what you need! Now you can tell that other surgeon to K@#((*!
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  • conniehar
    conniehar Member Posts: 954
    edited August 2007

    Glad to hear the news, Marsha!

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  • trigeek
    trigeek Member Posts: 916
    edited September 2007
    Marshakb ?

    Are you in Orlando too ? I just got my bilateral mastectomy with immed reconstruction last friday and am in Orlando too. Would like to pick your brains on oncologist/radiologists that you are working with.

    email: triagain2002@yahoo.com

    Thanks !
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  • Kimmypooh
    Kimmypooh Member Posts: 8
    edited August 2016

    I live in Orlando and was recently diagnosed with ILC... Who was your surgeon? I need a surgeo

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  • Icietla
    Icietla Member Posts: 1,265
    edited August 2016

    Kimmypooh, here is a link to a thread that may give you some leads to good breast surgeons in that area. Member IrishEyes39 invites contact through our message system.

    https://community.breastcancer.org/forum/68/topics/764691?page=1#post_4490498

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  • Icietla
    Icietla Member Posts: 1,265
    edited August 2016

    Kimmypooh, also see this thread linked here, where SpecialK's post may give you some good leads.

    https://community.breastcancer.org/forum/80/topics/764183?page=853#post_4158955

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2016

    kimmypooh - the OP of this thread has not been active on this site for a number of years. When you ask a question in an old thread like this one you should click on the member name to double check if they still post here, their member info will show when they last logged in - that way you aren't waiting for an answer from someone who unlikely to see your post.

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  • Nopoli
    Nopoli Member Posts: 21
    edited September 2016

    Marshakb, I was diagnosed with stage 1 ILC this year after I had a prophylactic mastectomy of my right breast. At the same time, I had a mastectomy to remove what they thought was a 3 cm lesion in my left beast (nipple to chest wall). Images of the left (us, 3D Mammo and MRI were showing a large invasive cancer but 2 biopsies showed high grade DCIS and LCIS, hyperplasia, sclerosis, you name it). So they didn't know what we were dealing with. Final answer would have to come after surgery.

    I had had extremely dense breasts with stable calcifications (BiRad 4). The 3D Mammo showed nothing on the right side, but the MRI showed a lesion which the BS was not worried about at all--a fibroadenoma, they said. Because my Mom passed away from recurring, two primary metastatic breast cancers, I opted for prophylactic on the right.

    Post surgery, the findings on the left were 6 cm of grade 3 DCIS, LCIS and cancerization of the lobules, embedded in a large sclerotic (benign) lesion, less than 1 mm margin in at least 2 spots, suspicion of micro invasion, isolated tumor cells in 1 of 3 nodes (highly ER positive; PR 10%; HER 2 -ve).

    What's more relevant to your question, on the right side they discovered a 0.9 mm Grade 2 ILC, highly ER and PR +ve, HER2 negative. Followed up with axillary dissection on right side: 0/14 nodes. Yay! I was smart (in decision) AND incredibly lucky. I've seen way too many stories of stage 3 and stage 4 ILCs at original diagnosis. Oh I had also had a PET-CT scan no contrast, and there was mild uptake in left side but not on right ILC side.

    Because Oncotype scores were in the low spectrum on both sides, no radiation or chemo were recommended (1 RO, 3 MO opinions). My view: I'm not too concerned with what my doctor feels or believesabout a removing a healthy breast. The choice is mine to make, and insurance covers it by federal law (as of 2009). The choice is yours to make. It's your body. Sorry this was so long, but I hope details are helpful to all.

    IGood luck. Warm positive thoughts.

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