Atypical lobular hyperplasia: Did you have surgery?

Posted by delormv @delormv, Aug 29, 2022

August 2021, I was diagnosed with invasive DCIS in my left breast. I underwent a lumpectomy, chemo, and radiation. I am currently on Anastrozole. August 2022, ALH was incidentally found in my right breast after a biopsy was performed due to microcalcifications found on a mammogram. My surgical oncologist stated that ALH does not need to be surgically removed since it is not cancer. Has anyone else been diagnosed with ALH and not had it removed? Have others had theirs removed? Thank you 🙏

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delormv | @delormv | Feb 10, 2023

In reply to @spinnerbait "First I want to wish you luck in your journey! March 2022 I was told had..." + (show)

@spinnerbait thank you for your response and I’m so sorry to hear about your experience. It sounds like a frustrating and unnecessary surgery that lead to an unwanted result. I appreciate your perspective. Hugs and prayers for you, too!

spinnerbait | @spinnerbait | Feb 9, 2023

In reply to @keepshining2003 "Hello, I am 44 years old just found out I have atypical hyperplasia. How many of..." + (show)

First I want to wish you luck in your journey! March 2022 I was told had Alh from a core biopsy. I was told it had to be removed though was only .5cm. I asked for a MRI first to double check what was there. I was told it wasn’t needed. The dr that did the core biopsy put in marker. They put in a guide wire for the lumpectomy. The dr that put in the guide
wire went from the top of my chest to the lower end of my breast then directed the wire to make a circle within a circle to hit the small mass. They also could not find the marker. The surgeon took out 27 grams of my breast. That is equal to holding 27 Pennie’s in your hand or 5.5 cm by 3 cm by 3.5 cm. Plus because the
Y could not find the marker they took out 3 more specimens the smallest being 3 x 3 x 3. I was a 34B. I now have a 34 mini breast on my left size. Guess what they found!!! Nothing!!!!! I would not have any surgery again without an MRI. I’m now wondering if the pathologist was incorrect on what she reported. All they found was some radio scar. I was told by a plastic surgeon I would need several operations to make me whole again. All this for a pea size spot. Medicare will only cover 1 surgery. 70 percent of women with Alh will never get cancer. I wish I had read more before they rushed me into surgery. Alh means you have a chance of getting cancer maybe. Hugs and prayers for you!

christie73 | @christie73 | Feb 8, 2023

My biopsy revealed ALH after having micro calcifications on a mammogram. I opted for the lumpectomy. Pathology revealed LCIS. While this is still not cancer it helps me better understand my risk. Initially I was on Tamoxifen but was switched to Letrozole after a total hysterectomy and salpinge-oophorectomy.

rebecca55 | @rebecca55 | Feb 8, 2023

In reply to @delormv "@rebecca55 If you don’t mind, would you please share any updates from your MRI in April?..." + (show)

I don’t go for my MRI until April of this year, 2023

delormv | @delormv | Feb 7, 2023

In reply to @rebecca55 "I had my appt with the oncologist on January 17, 2023 due to Atypical lobular hyperplasia...." + (show)

@rebecca55 If you don’t mind, would you please share any updates from your MRI in April? I go back and forth on my decision whether to have the ALH removed. Thank you.

debbie2721 | @debbie2721 | Feb 6, 2023

In reply to @keepshining2003 "Hello, I am 44 years old just found out I have atypical hyperplasia. How many of..." + (show)

@keepshining2003
I was diagnosed with atypical ductal hyperplasia which I think is similar. I had an excisional biopsy/ lumpectomy. I would have been prescribed tamoxifen but I have the factor five Leiden gene and the oncologist was worried about blood clots. I am taking Anastrozole and I don't seem to have any side effects after 4 months. I take it before I go to bed.
I was told tgey would like to keep me on it 5 yrs. I will also have mammograms every 6 months on that breast. Wishing you have a good outcome.

gags1 | @gags1 | Feb 6, 2023

In reply to @rebecca55 "Did you have any signs that you had the LCIS?" + (show)

None

delormv | @delormv | Feb 6, 2023

In reply to @fronterae "Yes, they removed all the ALH. Now I will continue with alternative screenings MRI and mammograms..." + (show)

Thank you. I appreciate your response and I hope your scans will always be clear of cancer. 🙏

fronterae | @fronterae | Feb 6, 2023

In reply to @delormv "@fronterae thank you for your response. Did the biopsy removal all of the ALH?" + (show)

Yes, they removed all the ALH. Now I will continue with alternative screenings MRI and mammograms every 6 months. And my appointment with the oncologist is March 1st.

delormv | @delormv | Feb 6, 2023

In reply to @fronterae "Hi, I was diagnosed with atypical lobular hyperplasia in my right breast. Had excisional biopsy to..." + (show)

@fronterae thank you for your response. Did the biopsy removal all of the ALH?

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