One year post DX and now have ALH in other breast...

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FLBuckeye93
FLBuckeye93 Member Posts: 87
edited November 2016 in Not Diagnosed With a Recurrence or Metastases but Concerned

I was diagnosed with IDC a year ago and went through TC and rads. I've had a hysterectomy and am now taking Arimidex.

I had a surgical biopsy on my right breast, which confirms I have no cancer (Yay) but I do have atypical lobular hyperplasia (ALH). I enjoyed a week of feeling free from cancer being a black shadow, and am now back in the process and anxiety of the increased risk of developing cancer in my right breast.

I'm frustrated because I can't find much information about these cells being present after a person has had chemo and is taking Arimidex.

I'm curious about a few things that maybe some of you would know about:

1. What is a double mastectomy with reconstruction really like?

2. Has anyone had this experience and what did you do?

3. I can't find any information about the affects of chemo and Arimidex on ALH. Does anyone know where to find info?

4. Has anyone been to MD Anderson for cancer treatment or a second opinion?

5. What other cancer centers are well known for their breast cancer treatment/research?

My surgeon and oncologist are wonderful, but I feel I need another eye on what is going on to prevent further chemo treatments etc.

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  • triple_amethyst
    triple_amethyst Member Posts: 2
    edited November 2016

    Hi - I have also been diagnosed with ALH after just finishing treatment and now I'm waiting to have the surgical biopsy. I totally admit, I wasn't prepared for ANYTHING to be potentially wrong so soon!! I also didn't think I could be just as scared as I was when I was first diagnosed!!

    Anyway, I have only met with my oncology surgeon so far to discuss the upcoming biopsy and I don't want to get too far ahead on this. He says if no cancer is detected in the biopsy, then it is reasonable for me to still keep my breast and no further treatment will be recommended. He also went on to say that being diagnosed with ALH so soon after treatment does put a bit of a spin on things, and so, it would be justified in choosing to proceed with a masectomy whether cancer is detected or not. At least that's how I understood him. So now, I'm just sitting here trying to think about everything without letting fear get in the way and that's easier said than done, of course!

    I see that your post is from October so I'm assuming that you have more to add to your story now. When you read this, I hope you will post. :)

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  • FLBuckeye93
    FLBuckeye93 Member Posts: 87
    edited November 2016

    Hi

    I'm so sorry you're dealing with this. My biopsy showed that I have LCIS in the right breast, which raises my risk of cancer in both breast. Both my SO and MO said to watch and wait with scans every six months. I'm not so sure about that. I've met with two plastic surgeons to see about recon for a BMX. It is trick you because of having had radiation.

    My story hasn't ended there, the second plastic surgeon felt a lump in my right breast, so now I'm waiting to schedule another biopsy. 🙄

    I find the fear to be a bit more overwhelming this time because there is no definitive course of treatment. I'm only 46, so watching and waiting seems silly, and I'm not sure if I want to do recon if I opt for a bmx.


    Please keep me posted on your results. Your fear is completely normal. I'm finding people who haven't been through this just don't understand that fear.

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  • wallycat
    wallycat Member Posts: 3,227
    edited November 2016

    I'm not sure this is helpful but will put it out there...My twin had a breast reduction (no breast cancer) and they had an incidental finding of LCIS/ALH--not sure which they called it or if the name is now interchangeable. They got clean margins removing a lot of breast tissue for the reduction. She has done nothing since, minus the MRIs to monitor her annually or every 1-1/2 years. It has been 3-4 years and nothing much has happened (thankfully).

    She did have a radical hysterectomy so maybe lack of ovaries is helping, but that is just speculation.

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