Papillary carcinoma and papillary lesions returned: What next?

Posted by richandjanice @richandjanice, Feb 16 8:51am

Just diagnosed with papillary carcinoma on largest mass (1.3cm) Er/Pr+ and biopsied two more that were papillary lesions with atypia - all appear non invasive and ultrasound of lymph nodes appear good - working with insurance now to find treatment center - live north of Atlanta. This is third time with breast cancer - 2004 and 2011 rt breast - mastectomy in 2004 - "came back" on rt side in 2011 - now left side. any advice? seems to be multifocal - have had mammograms, ultrasounds, mri and 3 biopsies. so confusing!

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Welcome @richandjanice, what a gut punch to have to deal with breast cancer again on the other side. I'm tagging a few members who have experience with papillary carcnoma of the breast like @waterlilies1899 @omega20 @kaki49 @waterlilies1899 @triciaot to share their thoughts.

You might also find this discussion helpful:
- Multifocal and Multicentric Breast Cancer https://connect.mayoclinic.org/discussion/multifocal-and-multicentric-breast-cancer/

@richandjanice, it sounds like you're in the head-spinning phase of gathering all the diagnostic information to get a treatment plan. When do you meet with the team to discuss treatment options? How are you doing?

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@richandjanice I find the information about papillomas and breast cancer somewhat inconclusive - they don’t seem to know what drives them.
I had DCIS with a papilloma, maybe different from papilloma carcinoma. But I keep trying to find out more as the location of my papilloma, LOQ, has a higher incidence of being associated with multiple papillomas, which I’m afraid they just haven’t found yet. Recently found are very small intraductal papillary mucinous neoplasms on my pancreas. Research at this time show no correlation, but I can’t help wondering, so I stay on top of current research. Sorry, didn’t mean this to be about me.

I keep an eye on whether they’ve discovered that papillomas are associated with a virus. Although they say breast papillomas are affected by estrogen - which you and I are both ER+. Some papilloma shaped lesions are from a virus, as those found in multiple places on organs and skin.

My latest research attempt is genetic - here’s what an AI produced answer gave me:
“Yes, both APC gene inactivation and K-Ras activation can increase the risk of abnormal epithelial cell growth, including, or leading to, proliferative lesions like papilloma in the breast duct. These genetic alterations contribute to increased cellular proliferation and tumorigenesis.”

I had genetic testing for 12 indicators, but APC and K-Ras were not included in 2022. It seems like K-Ras is fairly recent and is talked about in the pancreatic cancer group.

Comments I share are based on the information available to me, which is limited. So take it as an option to maybe ask about, but not as proven data.

The Winship Cancer Institute of Emory University is a National Cancer Institute designated comprehensive cancer center located in Atlanta. You might want a second opinion from there, or transfer your care there.

I drive 3.5 hours to go to a comprehensive cancer center in Texas. Some find this excessive, but I feel better assured that the care I get is well researched and current.

Best wishes to you!

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So helpful - Ill print this out and add to my questions to ask page!

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Profile picture for Colleen Young, Connect Director @colleenyoung

Welcome @richandjanice, what a gut punch to have to deal with breast cancer again on the other side. I'm tagging a few members who have experience with papillary carcnoma of the breast like @waterlilies1899 @omega20 @kaki49 @waterlilies1899 @triciaot to share their thoughts.

You might also find this discussion helpful:
- Multifocal and Multicentric Breast Cancer https://connect.mayoclinic.org/discussion/multifocal-and-multicentric-breast-cancer/

@richandjanice, it sounds like you're in the head-spinning phase of gathering all the diagnostic information to get a treatment plan. When do you meet with the team to discuss treatment options? How are you doing?

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@colleenyoung definitely head spinning period. I have an appt with a surgical oncologist on weds and a medical oncologist march 10th - doing all the right things for last month - no sugar, gluten or alcohol - nutrition and supplement stuff. Im ok with mastectomy if necessary but wanted to see if any other options before that - after 4 mammograms, 4 ultrasounds, 3 biopsies and one mri - still very confused - it seems to be in multiple quadrants

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Profile picture for richandjanice @richandjanice

@colleenyoung definitely head spinning period. I have an appt with a surgical oncologist on weds and a medical oncologist march 10th - doing all the right things for last month - no sugar, gluten or alcohol - nutrition and supplement stuff. Im ok with mastectomy if necessary but wanted to see if any other options before that - after 4 mammograms, 4 ultrasounds, 3 biopsies and one mri - still very confused - it seems to be in multiple quadrants

Jump to this post

@richandjanice, you may be interested in this related discussion as you prepare for your upcoming appointments:
-Double mastecomy and trying to decide whether to do chemo or not https://connect.mayoclinic.org/discussion/double-mastecomy-and-chemo/

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Profile picture for richandjanice @richandjanice

@colleenyoung definitely head spinning period. I have an appt with a surgical oncologist on weds and a medical oncologist march 10th - doing all the right things for last month - no sugar, gluten or alcohol - nutrition and supplement stuff. Im ok with mastectomy if necessary but wanted to see if any other options before that - after 4 mammograms, 4 ultrasounds, 3 biopsies and one mri - still very confused - it seems to be in multiple quadrants

Jump to this post

@richandjanice, any update? How are you doing?

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Doing ok...just saw a medical oncologist on Monday. He wants me to go on ai..letrozole...then mastectomy. I'm on a significant supplement protocol but they want me to cut out berberine, tumeric, quercetin, green tea, and restverotol while on AI. That seems counterproductive. If its an either or...praying about decision but leaning towards not taking it

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