Papilloma found, need surgery, many questions!

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rhonva
rhonva Member Posts: 5

My doc just called with a "good news bad news" biopsy report (after a mammogram and ultrasound). No cancer, but I have a papilloma that she recommends removing as soon as possible. I go in to have a clip placed in the biopsy site next Tuesday and am supposed to get a surgical consult ASAP.

Has anyone had this before? I have so many questions, and the internet is just confusing me more.

- Is the surgery with a local anesthetic, or is it a full surgery where they put you all the way under?

- What are the chances that they'll discover another type of cancer in or around the papilloma? My impression is that that's why they want it removed... in order to check for something worse.

- What is recovery like?

- How about followups? Am I likely to have to be rechecked more frequently? If I have one papilloma, is this something that tends to happen again and again?

I'd appreciate hearing your experiences! Thank you in advance...

Comments

  • SecretAgentL
    SecretAgentL Member Posts: 86
    edited July 2013

    Hi, rhonva!

    I like to say that I'm the Queen of All Things Papilloma. ;-) So I'll be happy to answer your questions.

    First, I'm sorry you're going through this! Have you had your surgical consult yet?

    Just yesterday, I had my third and fourth papillomas removed from my left breast. I'm 35 years old. My very first papilloma in 2006 had atypical cells. As a result, I've been watched like a hawk ever since. And thank goodness, too, because I've had three other papillomas show up.

    As for your questions:

    1. The surgery is done under either a "twilight" anesthesia or general anesthesia. It depends on your surgeon, your body, and your anesthesiologist. For all three of my surgeries, I was out like a light. Didn't feel or remember a thing. Easy peasy. Do be aware, though, that women tend to have a unique reaction to anesthesia in that they often are very weepy when they "wake up" from it. Don't be alarmed if you find yourself crying when you wake up. Our hormones react uniquely to the medicine in a way that men's don't. I weep like crazy after surgery! And all I want to do is hold my nurse's hand and have her sit with me for a few minutes.

    2. The chances that they'll discover cancer is typically around 5-10%. And if it is cancer, it's typically DCIS, which is stage 0. But most times, papillomas are completely benign. They're like these annoying little wart-like growths that form in the milk ducts. Nobody knows why or how they form, which is frustrating. Doctors like to remove them not only because they can sometimes hide early stage cancer but also because they can cause nipple indentation (mine did) and nipple bleeding (mine did).

    3. Recovery is really not bad at all. You'll be a bit sore, but a Rx pain reliever really helps. I take Vicodin, and it's very helpful. (Just remember to drink lots of water or drink a bit of prune juice, because Vicodin can cause constipation.) You'll need to wear a good sports bra for about a week, and you'll need to sleep in it for the first few nights. Also, get some frozen peas or corn to use as your "ice pack" because it molds really well against the breast and fits snuggly in the sports bra. My icing regimine is 20 minutes every three hours. (I currently have a pack of frozen peas in my sports bra as I type this!)

    You won't be allowed to lift/push/pull anything greater than about 5lbs. for a specific period of time (your doctor will specify). Just take it easy the first few days. Rest. Catch up on Netflix, magazines, napping, Ben & Jerry's, etc. :) You also won't be able to bathe for 24 hours.

    4. As for follow-ups, you'll definitely have a post-op follow-up within 10 days to 2 weeks after. And then your doctor will decide how often you'll need to be screened. Because I have such a history of the little buggers, I'm screened every 6 months. I'm part of a high-risk breast cancer clinic program in Pittsburgh due to my first papilloma having atypical cells (which puts me at roughly a 25-30% higher chance of developing breast cancer in the future). I get a mammogram and MRI once a year, alternating the two every 6 months. I'm very, very fortunate that I have excellent insurance, a medical team that advocates like hell for me, and that I live in one of the best medical cities in the country.

    Please do keep me updated on your situation. I feel a kindred spirit to other women with papillomas. And if you want to private message me, please feel free!

    Thinking of you and sending lots of love and light,

    Laura :)

  • Kalaki808
    Kalaki808 Member Posts: 17
    edited July 2013

    Thanks for the great info secretAgent. I'm havingy first one removes on Aug 1st. I was walking around for the last week I'm the dark and so out of it for fears core biopsy was going to come back as cancer. I started to cry of releif when he tolde no cancer but papilloma. Still confused about it all and you give great information-- THANKS

  • rhonva
    rhonva Member Posts: 5
    edited August 2013

    Hi, it's me again. I had the papilloma removed by surgical excision a month ago. Final results came back benign, no cancer and no atypia.

    BUT... in the final surgical report I was hand-delivering to my regular radiologist last week, I read that the hosptal radiologist had noted ANOTHER mass very close to the first in my pre-surgical ultrasound. It is 'well-circumscribed and hypoechoic'. I went right back and showed the report to my surgeon (I was upset) and she calmly said it was 'probably another papilloma, don't worry'.

    Another one? Already?!? What?? Shouldn't it have been taken out the first time, while they were in the neighborhood?

    Am waiting to hear back from my regular radiologist about how to proceed. Any idea what I should expect? Am I about to go on this ride all over again? Scan, biopsy, clip placement, wire placement, surgery? It's only been a month! But if it really is another papilloma, shouldn't I have it out? SecretAgentL, you've been through this before, what do you recommend if she says I should watch and wait instead? I'm not so good at dealing with uncertainty. :P

  • larst
    larst Member Posts: 35
    edited August 2013

    Hi Rhonva, I had surgery about five years ago for a papilloma and the path report came back showing I had two, but mine were in the same duct, so they removed both.  I'm sure your surgeon is taking your entire medical history into account when saying that it's most likely another papilloma.  You can always get a second opinion if you're not comfortable with watching it.  Did you talk to your radiologist yet? 

  • Elena12
    Elena12 Member Posts: 6
    edited December 2017

    I just had an ultrasound and the radiologist said that the 9 cc lump was probably an interductal papilloma. I am having a core needle biopsy done next week and am very nervous that they will find something else. I know all the statistics but am still nervous, not sleepy, agitated,etc. I have questions about it even if (hopefully) it is an interductal papilloma. Do they always surgically remove the papilloma? If so, how long does it usually take between the biopsy diagnosis and surgery? Is it just a lumpectomy or more? I realize a lot of the answers depend on just what they find and what my particular doctor recommends. However at this point, I am just looking for some answers that might calm me down. I do much better when I know what I am up against. THANKS>

  • Tara17
    Tara17 Member Posts: 386
    edited August 2019

    Hi

    I dont know if this link is still active. My mother has been diagnosed with an intraductal papilloma. Biopsy showed atypical cells, so surgery has been advised . No lump. She had nipple discharge . Doctor said they will remove a large portion of breast. But did not explain how they will know exactly which portion to remove when there is no lump. We are confused as to how they will localize the exact area to be removed ?


    I read online they can use a wire. Can anyone here explain how the papilloma was ‘localized ‘ before surgery when then is no lump that we can feel to guide during surgery ?


    Thank you

  • Elephant
    Elephant Member Posts: 88
    edited August 2019

    Tara17: I also had no lump, the tumor was seen on an ultrasound and confirmed by biopsy. On the day of the surgery, they used an ultrasound to insert a wire where the tumor was to guide the surgeon.


  • Stherye
    Stherye Member Posts: 43
    edited August 2019

    Hi Tara,

    In my case, I also had a papilloma with atypical cells. All papillomas are removed, it doesn't matter if they have atypical cells or not.

    I went to MD Anderson in Madrid. They localized the papilloma via ultrasound. The procedure is quite simple, no pain at all, local anesthesia. The only thing is that probably she will have some bruises, but painless.

    When atypia is found, it can be adh, alh or fea. Because of the atypia she would probably will have check ups every 6 months during two years.

    Fea usually doesn't require any treatment, if it is adh or alh, it depends on other factors as family history or other conditions. Sometimes tamoxifen is recommended or only 6 months check ups.

    Don't worry about the procedure, it is painless. I wish her all the best. Hugs

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2019

    Hi Tara,

    I had an intraductal papilloma removed in 2000. I had the same thing. No lump, just a nipple discharge. In my case they removed all of the milk ducts on that side. They were sent off for biopsy just to be sure. My surgeon said they are 98% of the time benign but we had to be sure. It did come back benign.

  • Tara17
    Tara17 Member Posts: 386
    edited August 2019

    thank you all so much for your replies. I shared with my mother and these real life experience answers are so welcome

    Oceanbum -when they removed all the ducts on that side, did it leave a large cosmetic defect if you dont mind my asking —did the surgery affect nipple or arealoa in any way. Did they use any wire locatlixation with ultrasound like another poster mentioned or did they just remove all the ducts without using any wire

    Thank you all for answering these personal questions


    Stherye -what is fea ?


    Elephant we will ask the surgeon about wire localization -thanks for the information


    I really really appreciate you ladies. God bless you all


  • Stherye
    Stherye Member Posts: 43
    edited August 2019

    Hi Tara,

    FEA is flat epitelial atypia, it is less worrisome than ADH or alh. But it is also a kind of atypical cells. Pre-pre cancer

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