Meeting with Oncologist - Atypical Lobular Hyperplasia

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bellasmomma
bellasmomma Member Posts: 3
edited November 2016 in High Risk for Breast Cancer

I met with the Oncologist today to discuss my options.  He said that the path report couldn't confirm whether or not the cells were cancer.  He said I was on the border between Atypical Hyperplasia and cancer.  I have decided against Hormone Therapy and have decided to have a lumpectomy--especially with the news that it is possible that some of the cells were cancer.   Can anyone share their experience?  I do not need radiation.  I was just wondering the cost as well as recovery time including possible complications.      Thanks.   

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited August 2016

    In my case my sterotactic biopsy was ALH, suspicious for LCIS, lobular carcinoma in situ ( which despite the name is just a marker for being at higher risk for developing cancer and not considered cancer.) I had an excisional biopsy to make sure there was no invasive cancer or DCIS. I did have LCIS, but nothing worse. Suggested six month follow ups. I've been offered anti-hormonals but am still on the fence. So far, so good.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited August 2016

    It is possible that the pathology is either ALH or the next step up LCIS, which is actually not considered cancer but pre-cancer. Apparently the cells between the two look very similar. I was diagnosed with either ADH/ALH or DCIS/LCIS by two independent pathologists. The tie-breaker at Vanderbilt called it ADH/ALH. There is a LCIS forum here with loads of info about it. After my diagnosis my BS sent me to a genetic counselor, at which point my risk was determined to be 50%.

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  • Erinmaloney86
    Erinmaloney86 Member Posts: 1
    edited August 2016

    I just had my 2nd excision (July 28th 2016) to remove a Phyloddes tumor and the cells in the 2nd surgery margins had ALH. I'm 43 and they are recommending tamoxifen I'm not sure that I should do this? Does anyone have any advice or questions I can ask on my 2nd opinion? I also have a history of extremely dense breast tissue, drainable cysts, and radial scars that have been removed surgically. Family history of breast cancer: both grandmothers and fathers sister and mothers sister. Nobody before the age of 50 though. My phyllodes was listed as malignant sarcoma stage 1 grade 2 it was about 2 cm.

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited August 2016

    Lumpectomy is pretty common after ALH/ADH--I had one 7 years ago with ALH and read then there's about a 20% chance they'll find something nastier nearby. Fast forward and I just finished treatment for DCIS. Keep up with your annual mammograms. I was about 18 months late on my last one.

    Farmerlucy--DCIS/LCIS is cancer, just not invasive.

    Erinmaloney--you might want to start a new thread for your questions.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited August 2016

    Ingerp, DCIS is cancer, but the newer preferred term for LCIS is lobular neoplasia, because it is not. Most women with LCIS do not go on to develop cancer

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  • fleur-de-lis
    fleur-de-lis Member Posts: 107
    edited October 2016

    Erin Maloney86

    Since Phyllodes tumors are so rare, there is really little known about them, but you know that! Was your first Phyllodes borderline or Malignant? I had a Phyllodes removed ( benign, but some ALH found deep in the tumor, it was 9 cm) and have heard that when they come back, they can present with a more aggressive form. Large surgical margins aside, are they planning on treating this more along the lines of a sarcoma? I ask because I was told at M.D Anderson by a sarcoma specialist that not all Phyllodes respond to rads or chemo. Although more and more Phyllodes are showing signs of a "mixed type of cancer" and that can offer more treatment options?

    My Phyllodes did not have E or P receptors, but.....wait for it.....strongly positive for Androgen receptors and well as IGF-1 receptors.

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  • ESinNJ
    ESinNJ Member Posts: 10
    edited November 2016

    I was diagnosed with LCIS almost 3 yrs ago. I met with 2 genetics counselors, who agreed that about 85% of breast cancers are random, and not related to genetics. I was not tested because insurance wouldn't cover it. I began surveillance with drug therapy. I started with tamoxifen. My uterine Fibroids grew to the point where the word "hysterectomy" was being tossed around. Switched drugs to exemestane. I didn't tolerate it well. Now 1 1/2 years on anastrozole, living with increasingly worse arthritis, I've decided to undergo a bilateral mastectomy with reconstruction. I've consulted with breast surgeons from two institutions, an oncologist and 2 plastic surgeons. None of them feel this is a drastic option. It all comes down to how

    much uncertainty you can live with. I choose not to spend the rest of my life watching, waiting, and praying after every MRI and mammogram that I am still cancer free.

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