Multiple Papillomas

Cookie66
Cookie66 Member Posts: 6
edited February 2019 in Not Diagnosed But Worried

Hello, After a core needle biopsy, I was diagnosed with multiple papillomas (sclerosing usual ductal hyperplasia), micro-calcification, no malignancy. A surgery is suggested by my primary care doctor. I'm trying to find what experience other women went through in the same/similar situation. I'm nervous about what is going to happen.

I'm scheduled to see a breast cancer specialist to discuss treatment options but meanwhile, I started to learn more about multi papillomas. My understanding is multiple papillomas has increased risk for breast cancer (compared to solitary papillomas). I'm considering a surgery to reduce the risk of having cancer and was thinking that I'd receive microdochectomy or breast -conserving surgery. However, I just read on the internet that complete treatment for multiple papillomas is mastectomy. I'm very nervous about the idea.

Has anyone been in my situation? What was your treatment? Microdochectomy or mastectomy?

Thank you so much.

Comments

  • djmammo
    djmammo Member Posts: 2,939
    edited January 2019

    Cookie66

    In my experience it depends on the number and distribution of the papillomas. Hypothetically if they were all in one duct you could remove just that duct. If they are all located in one quadrant they could just remove that section. I don't imagine a mastectomy would be recommended unless they were demonstrated throughout the entire breast.

    How were you diagnosed with multiple paps? MRI? Ductography? US? How many? Where are they?

  • Murfy
    Murfy Member Posts: 342
    edited January 2019

    I had multiple papillomas under lt nipple. Painful! Biopsy revealed presence of IDC. I had mastectomy. 2 separate DCISs were found in same area with further pathology.

  • Cookie66
    Cookie66 Member Posts: 6
    edited February 2019

    Dear Murfy

    Thank you for sharing your experience. I hope you're doing better today. I'm glad that all the cancer is removed now. I wish you great health!

    Cookie

  • Cookie66
    Cookie66 Member Posts: 6
    edited February 2019

    Thank you DJMAMMO for the information and the quick reply.

    I haven't seen my specialist and don't have all the information. So far, the message says that the biopsy result was benign but a surgery is recommended due to increased risk for cancer. I was told by my primary care doctor to see a specialist and discuss a surgery option with her to be safe. The specialist may order MRI or ductography?

    Here is the information I have so far regards to my condition:

    2nd 3D mammogram and US:

    Mammogram findings: two findings; architectural distortion in one breast 3 o'clock measuring 14mm associated coarse heterogeneous calcifications, upper inner quadrant. An oval mass in the same area 3 o'clock, 1 cm from the nipple, slightly more posterior than the distortion.

    US finding: A cluster of microcysts measuring 5x5x4mm in the same breast at 3 o'clock, upper inner quadrant, 1 cm from the nipple

    Needle core biopsy was performed after the 2nd mammogram: CALCs 3 o'clock, 4 cm from the nipple; findings: * consistent with sclerosis intraductal papilloma with UDH, * microcystic change, columnar cell change, and sclerosis adenosine, *Microcalcifications-identified within papilloma, No malignancy identified (multiple deeper levels examined)

    I don't know if further testings are required but it seems everything is in the same area (3 o'clock, upper quadrant), so do you think it's more likely that removal of the upper quadrant will be suggested instead of mastectomy?

    Thank you again.

  • djmammo
    djmammo Member Posts: 2,939
    edited February 2019

    Cookie66

    The breast surgeon I worked with most recently would order an MRI pre-operatively on all patients with an abnormal biopsy. Since they are very vascular, papillomas show up very well on MRI. In these cases we would draw a little map of their locations and decide how large or small an area needed to be removed. Since you cannot feel them at surgery localization wires are placed to delineate the perimeter of the area to be removed.

    Let us know what imaging they want pre-op.


  • Cookie66
    Cookie66 Member Posts: 6
    edited February 2019

    Thank you so much for the information, DJMAMMO. I'll keep you posted. Cookie 66

  • Stherye
    Stherye Member Posts: 43
    edited February 2019

    Dear Cookie66,

    I have read on these forums some women that had multiple papillomas, and they got them surgically removed through the years without any problems.

    I just can tell my experience. I had one papilloma removed and it had atypical cells. It wasnt painful and the breast was perfect after the excision (only a brush) that dessapeared in 2/3 weeks. Again, no painful.

    After that, four months later I discovered by ultradounds, I had another papilloma. Then, I got a MRI done. This time no atypia. But after reading and reading I opted for a mastectomy in both breasts. I know I was too extreme, I had it because of the atypia in the first papilloma. It is not your case, and of course it is overtreatment, but I just wanted to share my experience because the results are amazing. Maybe it is not always the same, I dont know, but in my case it is realy awsome. It looks like I have had an aumegtation. So please, in your case if they remove them, you would be all right, but if a mastectomy is suggested, you would be all right as well.


    Take care.

  • Cookie66
    Cookie66 Member Posts: 6
    edited February 2019

    Dear Stherye

    Thank you so much for sharing your experience and kind words. I'm glad that you're doing well. Did have papilloma in both breasts in a different time? Is that the reason for your mastectomy?

    No women want mastectomy as the first choice but if it helps the situation, why not? When there are choices you can make (whereas in some cases, there aren't many or none), it's a personal choice. I respect your choice and I find you very brave, too. I can understand that some women would decide not to have a surgery and want to monitor it closely by having mammogram every 6 months if it's not atypical cell. For me, I'd rather not have extra anxiety. If there is something I can do now to reduce the risk of cancer for the future, I'd like to do it. Plus, I'm taking care of my elderly parents and I need to stay healthy for them, too. I'll need to talk to my specialist doc as to what type of surgery she recommends, but it's good to learn other women's experience and they're doing well.

    Thank you Stherye. I wish you the best of luck in everything!

  • Stherye
    Stherye Member Posts: 43
    edited February 2019

    Dear Cookie,

    I had the two papillomas on the same breast, in my right one. I opted for pbmx because my first papilloma had FEA. Fea it is a kind of adh, it is considered as pre-pre-cancer by some specialists (yes, double -pre)

    So, it was FEA what made me to decide. I know it is overtreatment, but the results are amazing and I am at peace with my decision. I knew I couldnt live thinking all the time,what is going on inside my breasts? Are atipycal cells growing again? Both times I couldnt feel anything because papillomas were deeply inside.

    Please, dont get me wrong, I dont want to push anybody to pbmx, as this is an extreme decision, what I just one to share is, if one day anybody needs it, it is not as painful as I had thought and keeping skin and nipples offers great great results.

    Take care

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