FEA, LCIS ,ALH and ADH

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fiddlendaydream
fiddlendaydream Member Posts: 11

I have been diagnosed through biopsies with:

Right breast upper quadrant: FEA, LCIS and ALH

Right breast lower quadrant: ADH

Left Breast: ALH

They just removed all these areas on Thursday. I meet with my doctor in a week and we will discuss the pathology. My questions are:

1) Are any of these areas considered pre-cancer?

2) Having removed these masses, am I still considered at high risk for sometime in the future developing cancer

3) There has been talk about me going on Tamoxifen, I'm concerned about this. what would be the criteria for putting me on this medication if no cancer comes back in the pathology report.

4) is it unusual to be diagnosed with all of the conditions that I've been diagnosed?

Thank you,

Denise

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  • Lea7777
    Lea7777 Member Posts: 274
    edited May 2019

    Hello Denise. Great weightlifting picture. Being fit is always helpful as a lower BMI post-menopause correlates with lower breast cancer risk and a higher BMI post-menopause correlates with a higher breast cancer risk.

    1. They can be considered a pre-cancerous condition. (I had no before an edit.) They are conditions that increase your risk of cancer in either breast because your cells are behaving abnormally. But they are not cancer and you may never get cancer and they are not the first step on the road to inevitable cancer. It is not a situation where if they are not treated you will eventually get cancer. There is continued research and debate about LCIS that results in invasive lobular carcinoma in the same area where LCIS has been found.

    2. Yes, higher than the average risk, which is 1 out of 8 women. Still, it is good you had the areas removed so they could be analyzed.

    3. The reason for Tamoxifen would be to decrease your risk of developing cancer in the future, since your odds are higher than average. There are 5 drugs that a post-menopausal woman can take to decrease the risk of breast cancer, Tamoxifen being one. Closer surveillance of your breasts may also be recommended.

    4. No. What you have are various forms of atypia. The cells of your breast are acting in an atypical manner. Throughout your breasts, whether the lobular or ductal sections, the cells are atypical. If you have one of your conditions, it is likely you'll some of the others. I have all of your conditions, except FEA.

    Your diagnosis can be confusing because you do not have cancer or even pre-cancer. But you are at a higher risk than average for developing breast cancer in the future. How much higher is the topic of current research and there is not always agreement based on the different models. It generally ranges from about 20%-50%, maybe 60%, over a lifetime, depending on the source you consult. Most of the professionals I have gotten advice from indicate a 20%-35% lifetime risk for LCIS and ALH. ADH has a lower risk.

    This is a good place to seek answers and share your experiences. Best wishes.


  • fiddlendaydream
    fiddlendaydream Member Posts: 11
    edited April 2019

    Thank you for getting back to me. Yes, the whole thing is so confusing. I have lost about 90 lbs in the last 3 or so years, and just started exercising with a personal trainer 2 years ago. The weight loss began because of a pre-diabetic condition (which is no longer the case) and High blood pressure (still working on that). I'm still hoping that they will not put me on any medication. I guess I'll know more on Monday.

    Thank you

  • Lea7777
    Lea7777 Member Posts: 274
    edited May 2019

    Good luck at your Monday appointment. 90 lbs!!! Impressive.

  • fiddlendaydream
    fiddlendaydream Member Posts: 11
    edited May 2019

    So, saw the doctor today, good news, no cancer.

    As it turns out, I do (or did, LOL) have LCIS in both breasts. (originally it was only the right). I will meet with the high risk nurse at the end of August. That is when they want to do another ultrasound on another spot they saw in February. Something like that. They haven't ruled out that they may want to put me on a medication of some kind but that will be discussed in August, no hurry.

    I am confused about my emotions. I should be jumping with joy, but yet I'm not. Don't misunderstand me, I thrilled that there is no cancer. Can someone explain this to me? I can't explain what I'm feeling.

    Thank you.

  • Lea7777
    Lea7777 Member Posts: 274
    edited May 2019

    You may not be jumping for joy because you were not told, "Your breasts are normal. False alarm." The atypical diagnosis you received means your breasts are not typical, not normal by definition. It does increase your risk of getting breast cancer. (I edited a response I made above to your question on is it pre-cancer, because it can be considered a pre-cancerous condition but not the first step on the road to likely cancer.)

    This diagnosis introduces uncertainty into our lives and to deal with that uncertainty we may choose more screenings that can be stressful or drugs that may have undesirable side effects for some. But not for all.

    Your outlook will likely change in time as you learn more and have a chance to get used to what you've been told. The appt. with the high risk nurse is a good step. Nice to know there is no need to hurry.


  • fiddlendaydream
    fiddlendaydream Member Posts: 11
    edited May 2019

    Thank you so much for this, it is helpful to have someone who understands. I'm feeling better today and I'm sure I will feel better each day forward. There aren't too many people who understand what it is that I'm feeling.

    Thank you for the understanding,

    Denise

  • Lea7777
    Lea7777 Member Posts: 274
    edited May 2019

    However compared to a malignant cancer diagnosis, a little jumping is probably in order. You are right that literally there are not that many people who can fully understand.

  • fiddlendaydream
    fiddlendaydream Member Posts: 11
    edited May 2019

    Very true! However the actual jumping will have to wait until I'm healed, it sill hurts to much to jump, LOL. I AM happy there was no malignancy. I have several friends who I have seen go through actual cancer and it was hard to watch them go through it. 2 of them were my sister-in-laws, both have had a double mastectomy. They chose that route, it wasn't what the doctor had recommended. They made a choice to lesson their chances of future cancer.

    Again, thank you so much for the support.


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