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LCIS and ADH

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soworried
soworried Member Posts: 4

Hi, everyone,

I am new in this community and 49 years old. looking for advice from you. 0n 05/19, DX: ALH and radial scar, left breast from core needle biopxy; on 06/30,surgical lumpectomy performed on left but DX: LCIS, ALH, ADH,

I have young kids, what should I do? any suggestion? thanks!

SoWorried

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  • datagirl
    datagirl Member Posts: 5
    edited July 2022
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    I had a similar diagnosis. I started tamoxifen two years ago and still doing well

  • soworried
    soworried Member Posts: 4
    edited July 2022
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    Hi, datagirl

    thanks so much for your story, did you have MRI after surgery? I am worried that there is still LCIS remaining after my Lumpectomy because my surgery was intended to remove the ALH and radial scar after the needle bx, how often did you take Mammo after surgery? how did you close monitor?

    thanks,

    SoWorried

  • moderators
    moderators Posts: 8,286
    edited July 2022
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    Welcome, soworried! We're sorry you have to be here for this, but glad you found us! We hope that the community will be a source of valuable information and support for you. Good luck with everything and please, keep us updated on how you're doing!

    The Mods


  • pamep
    pamep Member Posts: 66
    edited July 2022
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    I had ADH mentioned in the pathology report after a lumpectomy for ER-PR positive IDC. As described by the Mayo Clinic: "Atypical hyperplasia is a precancerous condition that affects cells in the breast. Atypical hyperplasia describes an accumulation of abnormal cells in the milk ducts and lobules of the breast. Atypical hyperplasia isn't cancer, but it increases the risk of breast cancer." Sort of a pre-DCIS. My treatment was radiation and an adjuvant hormone blocker. The radiation to eradicate any stray cancer cells, the hormone blocker to reduce the environment for recurrence or a new primary. My surgeon referred me for a new diagnostic baseline mammogram after the radiation, and monitoring both breasts in 6 months. Have you asked your oncologist or surgeon about what to expect and more testing?

  • soworried
    soworried Member Posts: 4
    edited July 2022
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    Moderators and Pamep,

    Thanks so much for support and sharing. Today I will have the first talk with Oncologist for my case. I am preparing a question list. have not talked to my surgeon for the followup lumpectomy yet.

    Pamep, were you diagnosed ADH before your IDC diagnose, if you would not mind? Thanks


  • datagirl
    datagirl Member Posts: 5
    edited July 2022
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    Soworried,

    I had two mammograms the first year, but now it's just once a year. I haven't had an MRI yet, but the doc is going to do one in December. I admit that has me worried that it might show something, but so far the mammograms have been okay. My doctor says that tamoxifen often clears everything out. I guess we'll see when she does the MRI.

  • pamep
    pamep Member Posts: 66
    edited July 2022
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    soworried: No, my original diagnosis was from an excisional biopsy after a failure to sample the mass with a US guided core needle stem biopsy. ADH was not mentioned in that report. The ADH was found in the lumpectomy tumor pathology, so it was present in the breast tissue. My surgeon and oncologist did not recommend a post-operative MRI. Your doctors may recommend more thorough treatment and tests given your age and the unstated grade of your BC. Wishing you the best!

  • soworried
    soworried Member Posts: 4
    edited July 2022
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    pamep: why would your oncologist not recommend a post-operative MRI right after the surgery? My oncologist didnot say I should take MRI right away, but she also said she like to see my MRI results and then go from there. My talk with her was very brief and my followup with her is after MRI is scheduled.

    datagirl: you also havenot done any MRI yet since the diagnose of LCIS in 2020?

    You ladies are amazing! Wish you the best! thanks so much for your support!
  • pamep
    pamep Member Posts: 66
    edited July 2022
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    From what I understand from both my surgeon and oncologist, for at least early stage breast cancer patients, MRIs and other scans and tests are not recommended for women who do not have symptoms because "looking for recurrence on tests and finding it before there are symptoms has not been shown to make any difference in the outcome of the treatment...and the best quality of life comes with thinking you are okay." [Dr. Susan B. Love's Breast Book, 6th Edition, 2015, p. 461] False positives in testing can lead to more testing, and, truthfully, a true positive before symptoms leads to more testing and treatment that some of may want to avoid until we have real symptoms. This does in no way rule out regular physical examinations, oncology visits, or mammograms. It is very possible that MRIs, blood tests, and Pet Scans are becoming more usual, especially for higher stage, more aggressive breast cancers. It may be that your physicians want to be sure they got it all, as opposed to looking for recurrence.

  • zeebs2022
    zeebs2022 Member Posts: 2
    edited July 2022
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    I was first diagnosed with high-grade DCIS in 2007. Treatment was lumpectomy, radiation, and 5 years of tamoxifen. My oncologists (med & rad) recommended yearly mammograms and MRIs, 6 months apart. The following year, they found LCIS and ALH. The LCIS was excised, nothing further was found. I have a very strong family history, two sisters and a mother with invasive cancers, and there’s never been any pushback from insurance. Again, docs continued to order mammograms and MRIs. I had no side effects from tamoxifen, FWIW.

    Come early-ish 2021, I had a spot on my left side, prompting a biopsy. Fortunately everything was clear. In the fall, I had a follow up MRI and everything was fine. A month or so later, the mammogram showed something suspicious. Callbacks, biopsies, etc. and more DCIS (once again at a more serious level) and a new finding of ADH. While ALH is a non-obligate precursor to cancer, ADH is considered far more serious and I had both excised this spring. When all was said and done, after the pathology came back, my onc and surgeon and the tumor board recommended a mastectomy. Frankly, I was tired and all agreed that there was a high likelihood of more cancer down the road, and I had no desire for arimidex or other med, rads were out, and yeah, I had a bilateral mastectomy last month.

    Treatments are a personal decision, and with all due respect to Dr Love, when one has 3 family members in addition to one’s self with cancer, sometimes aggressive treatment and monitoring are essential. When one is pre-menopausal, I think it’s critical to follow up as recommended by your onc.

    So. Id be inclined to ensure that everything was excised with good margins and then start alternating mammograms and MRIs, with one every 6 months.


  • Utahmom
    Utahmom Member Posts: 8
    edited July 2022
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    I had PBMX 1 month ago.

    I had LCIS and ADH, PASH, typical hyperplasia, and more.

    Extremely Dense Breasts, family history, 58%, in menopause, proliferative busy breasts. Miccrocalcs throughout

    The LCIS was found on pathology.

    My doctors agreed it was the right move for me. I am grateful to have had the time to research, join groups like this one and make the best decision for my little family.

  • kimrochelle
    kimrochelle Member Posts: 2
    edited July 2022
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    Hi,

    I was diagnosed with breast cancer stage 1 Lobular Carcinoma Invasive Stage 1, underwent lumpectomy and radiation,

    Now, almost 10 years later, I had a needle biopsy that revealed LCIS, which is such a confusing diagnosis. It's not cancer, but I'm going to undergo a lumpectomy to see if it's hanging out with any other cancer,

    I'm nervous. Has anybody else had this happen? LC Her2 NEU positive, ER PR positive....in 2012...Now...LCIS...I'm hoping it doesnt' reveal any cancer and i dont' have to undergo radiation...again.

    i'm really anxious.

  • moderators
    moderators Posts: 8,286
    edited July 2022
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    Hi kimrochelle, we're sorry you are going through this. It sounds like a good plan to get the lumpectomy, and just take a look. One day at a time! It seems like you're in good care. You may want to use our Search also to the left to find other conversations on LCIS. We're all here for you, and please keep us posted Medicating