Atypical and Lobular Hyperplasia: What does micro papillary mean?

Posted by margiev2518 @margiev2518, Nov 4 5:01pm

I am 70 years old and have been told while I don’t have cancer, I do had Atypical Duct Hyperplasia in both breast and a combination of both ADH and Lobular Hyperplasia in one breast. My concern is the term micro papillary, I don’t understand what that means, but it doesn’t seem to go. I am seeing Nurse Practitioner in 11/13 to talk about possible medications. My breast surgeon said my percentage right now is a 2% chance of occurrence, but it may increase by the time of my next scheduled mammogram in July. If anyone can help me with an understanding of micro papillary, I would greatly appreciate it. It didn’t sound

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Micro papillary literally means little (micro) nipples (papillary). The cells lining your ducts are disorganized (same thing as atypical) and thicker (hyperplasia)...and in addition to that, the cells fold in toward the center of your duct and look like a bunch of little nipples (micro-papillary). Consider a drinking straw is like a duct - smooth on the inside and that is typical. If you are atypical the internal wall is thicker (creating a smaller tube) and no longer smooth...in your duct the internal cells lining the tube have built up on top of one another in the form of little nipples. Other people with atypical hyperplasia will just have thicker and the cells look unusual (ADH), others have thicker walls with some areas with holes - and the cells look unusual (ADH cribriform), and in others some cells make bridges between the sides of the wall - and the cells look unusual. Micro-papillary is just a very specific description of your cells. You probably already know ADH is a form of pre cancer that increases the risk of cancer...and if I remember correctly, the micro-papillary form further increases the risk. But don't worry - you've got this...it is not cancer yet and we have so many options for treatment nowadays. Your nurse will probably discuss options with you. I am 64, was diagnosed with ADH (just the thicker wall variety), and later LCIS, and my risk score jumped - and further jumped following genetic testing. I chose to have a prophylactic bilateral mastectomy (July 25) because I did not want to do high risk surveillance every six months (would have. made me nuts to wait for a diagnosis every six months), have further surgeries (two previous lumpectomies), and having a one and done seemed practical for me moving forward with my best life. Options are specific to each of our diagnosis and general health. Key is not to panic...your nurse, and sources like Mayo, will help you educate yourself on your treatment options - and of course will always be here for support. Good luck with your journey!

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Micro papillary literally means little (micro) nipples (papillary). The cells lining your ducts are disorganized (same thing as atypical) and thicker (hyperplasia)...and in addition to that, the cells fold in toward the center of your duct and look like a bunch of little nipples (micro-papillary). Consider a drinking straw is like a duct - smooth on the inside and that is typical. If you are atypical the internal wall is thicker (creating a smaller tube) and no longer smooth...in your duct the internal cells lining the tube have built up on top of one another in the form of little nipples. Other people with atypical hyperplasia will just have thicker and the cells look unusual (ADH), others have thicker walls with some areas with holes - and the cells look unusual (ADH cribriform), and in others some cells make bridges between the sides of the wall - and the cells look unusual. Micro-papillary is just a very specific description of your cells. You probably already know ADH is a form of pre cancer that increases the risk of cancer...and if I remember correctly, the micro-papillary form further increases the risk. But don't worry - you've got this...it is not cancer yet and we have so many options for treatment nowadays. Your nurse will probably discuss options with you. I am 64, was diagnosed with ADH (just the thicker wall variety), and later LCIS, and my risk score jumped - and further jumped following genetic testing. I chose to have a prophylactic bilateral mastectomy (July 25) because I did not want to do high risk surveillance every six months (would have. made me nuts to wait for a diagnosis every six months), have further surgeries (two previous lumpectomies), and having a one and done seemed practical for me moving forward with my best life. Options are specific to each of our diagnosis and general health. Key is not to panic...your nurse, and sources like Mayo, will help you educate yourself on your treatment options - and of course will always be here for support. Good luck with your journey!

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@anatomary
Thank you so much! This was confusing and scary. If they are talking about Tamoxifen, I don’t know if I can handle that. I already have night sweats from time to time and reading about severe joint pain and depression for at least 5 years maybe longer, I don’t know if I could handle that. While I don’t take having any part of my body removed, the girls (what my mom started calling my breast☺️) have served a wonderful purpose, but I would rather not have doctor’s appointments and mammograms every 6 months knowing that I may have a higher risk of cancer developing later. I rather just have surgery, and be done, at least I might be able to breathe a little and not live and wonder, ok will this test reveal cancer this time. You ladies are such a Godsend. Thank you for taking the time to reply, again, I really appreciate it.

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You're welcome; we know what it's like to be waiting to see our health professionals and the anxiety that goes with not understanding what's going on!

One of my options was to take tamoxifen for 5 to 10 years too - and like youself, after reading possible side effects I didn't want to revisit menopause (and other possible effects) either!

I also chose not to get implants. I did consider a "Goldilocks" ( basically fat transplant implant from belly or sides to your chest) but I was told I didn't have enough tissues. I was told they could do a reconstruction using muscle (and fat) from my abdomen or from my sides but this seemed quite invasive, and I didn't want to have an extended recovery. I decided to remain flat and requested an "aesthetic flat closure". I am happy flat.... takes you back to being a kid!

I learned a lot about mastectomy from Mayo plus more on going flat from links below. There are other BC mastectomy groups on Facebook and general social media - after you do a deeper dive you'll find the community that is meaningful to you.

Fierce, FLAT, Forward facebook group (private group so you request membership) and

Not Putting on a Shirt
https://notputtingonashirt.org
Good luck with your decisions - and best wishes for an excellent prognosis and a long and happy life!

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@margiev2518, how did your appointment go last week? Did you get your questions answered? What did you decide?

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Hi Colleen, sorry, my grandbaby was visiting and she was my focus for a bit. it went ok for now. They said my Tyrer-Cuzick score was 2.02 % with the needle biopsy to the age of 85 but it went up to 19.4% after the incisional biopsy. The team also mentioned the 5 year Gail Model was 1.75% with need core and 3.62% after incisional biopsy. This was a projected 5 year rate. My concern is that neither one of these analysis take in to account my race. I am addressing that issue. No medication for now, but better determination will me me after my July Mamogram. They do not at this time think I need to do the MRI as well.

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@margiev2518 You are right in being vigilant on understanding your risk, and to take into consideration your race.
If I were you I’d request genetic testing and definitely a MRI.
Genetic testing - BRCA1, BRCA2, TP53, these help identity the potential for triple negative cancer. Triple negative cancer typically is not ER+ and tamoxifen and AIs are not as effective.
MRI - sounds like you might have one scheduled. MRI is better at identifying the shape of the lesion, which helps determine type of cancer. Pay attention to growth rate, changes in size indicates aggressiveness.

If they have found your cells to be ER+ PR+, you might want to consider tamoxifen. I’m 71, have been on tamoxifen 3 years. I’m taking 5 mg now, I had a 24/7 headache on 20 mg. I do not have hot flashes, although when my body overheats due to environmental causes it takes a longer time to cool down. I do not have joint or bone pain, in fact I appreciate its bone conserving features as I have osteopenia. Tamoxifen reversed my vaginal atrophy - in postmenopausal women it can estrogen like affects on other body organs/areas. It’s a benefit for me. At 20 mg my hair thinned out, at 5 mg my hair has resumed growing at a normal rate. You do need to consider if you have contraindications for taking it due to uterine cancer risk and DVTs - things like PCOS, and prior DVT or endometrial growths. I’d be happy to talk with you about my tamoxifen experience, message me and I’ll send my phone number.

I’m guessing you have done some web searches for BC and included your race. I understand that the Siteman Cancer Center at Washington University School of Medicine is working on risk assessments specifically for women of color, if that is of interest to you.

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