The Call… You have Atypical Lobular Hyperplasia

May 15, 2015

The Call… You have Atypical Lobular Hyperplasia

Today was the day the anesthesiologist gave me a call to discuss the test results of my breast biopsy on May 13, 2015. It’s funny how they always start with the good news and then do the… but…. I think I would like to know that there will be good and bad news rather than the good news first, feeling elated and then that but comes and the fall from elated is significant.
It was hard to concentrate on the Information after the… but, but I heard words and phrases like, “You will need to schedule an appointment with a surgeon.”  And “You have something called Atypical… blah blah blah.” Luckily, TJ was there and asked me to have him repeat what he said.

Tip #1… have someone with you to write things down.

Tip #2… Make sure they understand what they are hearing or you could end up with a Globular instead of a Lobular.  🙂
He cleared it up before the end of the phone call and was super helpful. He went right to the internet and Googled Atypical Lobular Hyperplasia. He started reading all of the information to me… but, I didn’t hear a thing.
I started to take note of how my stomach was feeling. I thanked him for sharing and let him know that I needed to eat something in order to calm my stomach. I really didn’t want to know all of the details yet. I wasn’t ready. I knew that I needed to go back in and have a surgeon cut up my boob. That is what I knew.  That was enough for that moment. I still have the bloody patch on my boob from the biopsy and they want to go back in. That is what I know so far.
I also knew that I am not the first person to go through this and that my extended network would have my back and would have lots of information. I posted on Facebook and have felt the love and advice pour in since this post. Thank you Facebook friends and family.

“Looks like I will be doing research on a topic, that a few months ago was not on my radar. Here is what has happened so far…
1.  Mamogram
2.  Second Mamogram
3.  Biopsy on Wednesday due to calcification found in the breast
4. Call from Dr. “You now need to go to the surgeon. You have ALH  ‪#‎AtypicalLobularHyperplasia”‬

So, I will be blogging about this for those of you that are interested in the journey. Always learning…. always teaching. Love to all of you.”

I will start from the beginning in my next post so that you have all of the information in case you find it helpful. This will be my account, and by no means the right path for everyone, but rather my path because I am me.
Much love and support to all of you.
Jewels
9 replies
  1. Donna Smallin Kuper
    Donna Smallin Kuper says:

    Hope this makes you giggle…I was once the person who had to listen and take notes from the doctor for my ex who had just been diagnosed with throat cancer. I heard the surgeon say, “We need to do a “neck tie section.” I had visions of surgical incisions that went around both sides of the neck and down the front like a neck tie. What he actually said was, “We need to do a neck dissection.”

    Reply
  2. Lesa Hill
    Lesa Hill says:

    Love Donna’s story~ I also had a physician tell me I needed to go to a surgeon to have them “cut”, and I went to the Oregon Breast Center up in Lake Oswego, to get a second opinion. They did a needle biopsy and found that surgery wasn’t necessary~ and that was 20+ years ago! This may not apply to you, but a 2nd opinion may not hurt~ Love you Julie, and will be praying for health and healing, and am thankful that your family is a good support system for you (and your extended family). Hugs, Lesa

    Reply
  3. Tobie
    Tobie says:

    Curious how things are going since your ALH diagnosis. Did you take any risk reducing drugs? I have just be diagnosed with same. Found your blog in my search for understanding and direction.

    Reply
    • Jen
      Jen says:

      Hi Tobie, I was diagnosed with ALH last year, likely a result of having radiation therapy for Hodgkin’s lymphoma 20 years prior. They offered tamoxifen or double mastectomy but said I didn’t need to decide now. I opted out of both for now. Perhaps if I have more scares, I will reconsider. I’m open to more natural ways for managing estrogen levels. Gratefully, my mammogram came back clear. Hang in there!

      Reply

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