Atypical Lobular Hyperplasia Bordering on Lobular Carcinoma In-Situ

Melissa’s Rap: When I was 21, I discovered a lump in my breast. After multiple doctors appointments, mammograms and ultrasounds, my doctor decided I should have it surgically removed. Before the surgery, doctors found another lump in my other breast. So, I had bilateral biopsies. Thankfully, both were benign. Ever since that year, I have had at least one mammogram with a follow up ultrasound each year. They always find something, which results in additional mammograms, ultrasounds and ultimately surgeries or needle  biopsies. It has been 21 years of waiting for bad news.

This past week, it finally happened.

diagram_showing_lobular_carcinoma_in_situ_lcis_cruk_166-svg A recent biopsy came back as atypical lobular hyperplasia bordering on lobular carcinoma in-situ. Click here to visit The American Cancer Society to learn more. Essentially, I have a grouping of  cells in the tissue that tells my doctors my chance of getting breast cancer in my lifetime are pretty high. Later I would learn that doctors used to believe that this was already Cancer. If it was in the duct, it would be considered Cancer. But, so far, my irregular cells were discovered in the tissue. This does not always guarantee that that area will turn into Cancer, but drastically increases my chance of getting Breast Cancer in both breasts.

My doctor leveled with me: “With your history, I would recommend a mastectomy.” That was hard to hear, but I got it. For 21 years, I have lived in fear of this day. I always knew it would come, and I’m grateful I was diligent with my annual appointment and mammogram. I caught it very early and, if the surgeon agreed, I had a plan.

The doctor referred me to get a surgical consult. When I got to the car, I sat in the parking lot and cried while I notified my mother, my sister, and my best friend, Theresa. I was scheduled to work that day, but called in and headed home, to digest the diagnosis. Then, I got down to business. Surgical consults were scheduled. Friends who have endured a mastectomy and breast cancer were contacted in hopes of learning more about their experience and to get their input on my own diagnosis. I researched my benefits and I notified my boss. I also drank wine for lunch and binge watched Blind Spot. Everybody has their coping mechanisms. Mine are wine, Hulu and getting crap done.

I had my first surgical consult a few days later. The surgeon was a bit more hesitant to
recommend a mastectomy, but did say: “If it were me, and I had your history, I would seriously consider it.”

Two days later, I saw another surgeon, who had surgically removed a lump for me about 16 years ago. She was amazing. “I’m going to talk to you about your diagnosis and eprinc_rf_photo_of_breast_cancer_illustrationducate you on it”, she said. “And then, we are going to do an ultrasound and I will show you on the monitor what I am talking about. We’ll discuss what’s next and I’ll answer any questions you have.” I looked over at my dear friend, Kathy, who had gone to the appointment with me, and she mouthed: “I LOVE HER.” I knew I had found my surgeon. She was very thorough and helped me understand why we have to do things in a certain order.

We are starting with an MRI. That way, we will know if there are any other suspicious areas that need to be biopsied. From there, I will have surgery to remove the affected area and any other concerning lumps or tissue. According to the surgeon, in approximately 20% of patients with this diagnosis, the surgeon finds cancer during the biopsy. Then, next steps will become more clear. When I mentioned my doctor’s recommendation for a mastectomy, the surgeon didn’t rule it out, but said: “If you do that before you know what we are dealing with, it affects your ability to get into the lymph system later and can drastically alter your ability to diagnose and prevent anything happening in those areas.” She explained that we have to do things in the right order, or we can effectively create further challenges. Goodness knows I do not need to create more problems!

So, my next step is an MRI. Then, we will be able to make an informed decision about where to go from there. I am working on taking things one step at a time, knowing I am in good hands with my surgeon and have an amazing support system of family and friends. I am feeling grateful for advanced technology, the cautious diligence of my radiology team and the love of family and friends. Whatever comes next, I am ready.

Call to Action:

Ladies, if you have not had your mammogram this year, schedule one today. While mammograms can be inconvenient and are not exactly enjoyable, they can save your life. Get it on the calendar! Then, visit the American Cancer Society to receive annual reminders in your birth month. Comment below if you’ve got yours scheduled!

~ Melissa

 

Melissa, although I am physically far away, you are in my heart as yousarahs-head-bubble take on this new challenge. I wish you did not have to go through this, on top of everything else, but life certainly likes to keep us on our toes. Keeping busy and taking action is what we do when the going gets tough and I am happy to hear that’s exactly what you’re doing! I have full confidence that you are strong enough to beat this and, as your sister, I certainly know you are stubborn enough (family trait and all)! 🙂 Please be sure to take care of yourself and take time for yourself over the next few months, and just as importantly… remember it’s okay to ask for help from the many people that care about you. You may feel like it’s an imposition at times, but accepting help from others is a win-win for both parties. When we help someone in need, it helps us to feel good about ourselves and reduces our feelings of helplessness and sadness towards our friend in need. It also benefits someone we care about in very important ways. We love you and are with you through this battle! Thank you for sharing your story and your call to action! I had my mammogram a few months ago thanks to the local hospital’s travelling mammogram bus! 

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12 thoughts on “Atypical Lobular Hyperplasia Bordering on Lobular Carcinoma In-Situ

  1. Had mine last month, I do every year. However I usually have an ultra sound at the same time. This year I was told Medicare will not pay if I have both in the same day. So next week I go back, again, for the ultra sound. I have been doing mamograms for at least 27 years. Wouldn’t think of every missing it.

    Liked by 1 person

  2. Hi there, found your blog while researching online about atypical lobular hyperplasia. I was dx about a month ago and trying to make a decision about how to move forward, I enjoyed your article. I’m curious as to where you are in this process now?

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    • Hi Gena. I am sorry to hear of your diagnosis. I met with my surgeon recently and although my lumpectomy did not show cancer, I still need to choose between five years of chemo (Tamoxifen) and a preventative mastectomy. Because of my history (I had my first two lumps removed 21 years ago and have had 3 others surgically removed, as well as countless needle biopsies), I have decided to get the surgery.

      I did not choose it lightly. I researched both options, spoke with family who have been through the past 21 years of this with me and went through the pros and cons of each. For me, it makes sense. Now that I am high risk, that will come with an increase of the things I already had a lot of over the past two decades: mammograms, ultrasounds, MRI’s, needle biopsies and surgeries. While the chemo would reduce my risk by half, I would never rest easy, as I would worry that something was missed. The chemo also comes with its own side effects and risks. To me, I am choosing between a few months of hell compared to a lifetime of worry and life as a pin cushion.

      It is a tough decision and a very personal one. I wish you all the best on your decision and journey forward. Feel free to email me if you’d like to discuss further: thesisterrap@gmail.com. Take care! –Melissa

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  3. Pingback: Un-“Extreme” Prevention: Choosing A Preventative Mastectomy | The Sister Rap

  4. Pingback: Melissa’s Health Story | The Sister Rap

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