Intraductal Papilloma

hollyg3

Hi, I've been wanting to post about my experience with this for a long time. I had a hard time finding any information past 2010 when I was going through it. And this is long...! But I'm 2 years out and wanted to sum it up in case anyone else is dealing with this issue. Happy it's not cancer and hope my experience might alleviate some stress for someone else.

In May 2015 while carrying a load of laundry I noticed I felt wet on my right breast. Instinctively I squeezed, like when you manually express breast milk, and a clear, pink liquid came out. As I was 45 years old this was a surprise, and as a nurse I knew this was not normal. Of course I googled this and found what turned out to be the case: that the most likely cause was a papilloma in one of my milk ducts. Also google told me to go check inside the cups of my light-colored bras. Of course I did, and I found what looked like small watermark-looking circles. Guess I'd had discharge for awhile and not known!

I have a friend who is a nurse who works with OB/GYNs, so she asked one of them about this on my behalf the next day. The very helpful information I received was not to panic, that a papilloma was likely the cause, and not to expect any urgency in treating this since they are not cancerous growths.

My OB saw me about a week or so later and actually gave me incorrect information. She said that if it was a papilloma they 'didn't take them out any more'. She was very unconcerned about the whole thing, but yet did say she would set me up to see a cancer surgeon which made me a little nervous.

After a week went by and I still hadn't heard from the biopsy schedulers I called to schedule it myself, which of course they do not like to do without the referring MD information. We were in Disney on an already scheduled vacation and I spent an hour arguing with Radiology and my OB office about getting this done, while my kids rode rollercoasters and I tried to find quiet to hear.

I finally was scheduled for a biopsy about two weeks later which was uneventful. I'd had one the year before for what turned out to be a fibroadenoma in my left breast so I knew what to expect. The hardest thing about the biopsy for me was lying completely flat while they compress your breast (painful) with the ultrasound transducer and try to have a conversation with you at the same time. I get very aware of my breathing…too fast? Too slow? Am I messing up the ultrasound? Anyway, got my ice packs and back to work.

Two days later I get the call that it was a 'scant fragment of a papilloma' and the results were sent to Dr. White at Levine Cancer. Dr. White's nurse had initially called me right after my OB visit and was extremely helpful. She already had let me know again that papilloma is the most likely issue and that if so this would determine how quickly I saw the MD. We would wait for the biopsy before scheduling. If it had come back cancerous or atypical they would work me in soon, but otherwise I needed to be thinking about August for my appointment. She then called the next day to say they had the results and made me an appointment for mid-August.

I can't say enough good about Richard White. He is somehow able to give you the info you need and is concerned but has a great sense of humor. He gets points for straight-faced asking me if I wanted any more children at my age…! But realistically this is to determine whether I need my ducts any more. He explained that if I were 90 years old he'd shake my hand and say enjoy the rest of your life, but there is a chance that down the road this could either turn cancerous or may have precancerous properties that the biopsy didn't see, so he recommended surgical removal. He drew a picture of what he would do. (the year before I learned that with unwanted items in your breast they are described as numbers on a clock)

This papilloma was just under the areola at what they would call about '3:00' if you were facing at the breast. The surgery would be to cut around the areola starting at '12:00' and cut to about '6:00'. He would take all the ducts out on that side, since I didn't need them any more and this way no future ducts would become an issue. But, because he would basically be removing everything that the nipple used to be attached to, there could be complications, like nipple inversion and healing problems. He also wanted me to cut a hole in an old jogbra to bring to surgery; he said nothing should press on the site after surgery to keep this from happening.

Surgery was October 2015. He did an amazing job. You would never be able to tell I had any surgery on this breast at all. If you had a magnifying glass you may see a sliver of a tiny, tiny scar on the edge of the areola but everything just looks perfect. He put fascia under the nipple to give it a base so it will always very slightly 'stick out' now, but not in an abnormal way. Hard to describe but it just looks like the other one. I will say that the nerves have not grown back all the way, but I am ok with that. Still numb at the tip but I don't really notice. This was done in one-day surgery.

I was a little sore the next day but never needed any narcotic pain meds. Ibuprofen worked fine. Honestly the hardest thing was wearing the 'holey' bra for three weeks. (ended up buying two more cheap ones to cut so I could rotate). The comic relief in my house with me and my 'bullet' and it was known at first was hilarious. I would forget that I was 'exposed' sometimes if I was changing and my poor daughter got an eyeful one day. (You feel like you're covered in a jogbra after all!) Also related to the surgery, this was my first ever and I was worried about nausea/etc. but it was no problem. They had me wear a patch for this which lasts a few days. I ended up taking it off early because it was making me have blurry vision but I had zero nausea or vomiting.

Oh! The worst part of the whole thing was pre-op. They have to place a guide-wire so the surgeon makes sure to get the right duct. I think they also do this for cancers anywhere in the breast, but since this was below the areola the wire had to go in the nipple itself. They wanted to do this with ultrasound. But after 15 minutes of pressing extremely hard the radiologist just couldn't get a good look that way and I cannot tell you how painful those minutes were. They numbed the nipple, which wasn't as bad as I'd imagined, (or as bad as the ultrasound process). They brought an office chair into the mammography room for me to sit, and we did the needle placement under mammogram. The doc was in her heels and white coat and was almost sitting on the floor to get the placement right, while running back over to the machine to see. The Rad Tech was amazing and kept me calm, telling me not to watch but to just keep my eyes on her. Then they put a specimen cup over the site, tape it to your chest then put on your gown and you walk, Madonna-style back to one day surgery. I will say, Dr. White's nurse did tell me to expect this but I didn't really believe her that it would happen that way exactly.

Ok this is probably way more than you need to know, but I go for my annual mammogram tomorrow and just felt like getting it all down on paper. Best of luck to you who may read this!!

Moderators

Thank you for sharing your story, Holly! And good luck at your mammogram tomorrow!

--The Mods

Adopt2002

Hi thank you for telling your experience. I went for my core needle biopsy last week and a titanium marker was placed in the lump. It is in the left breast in the 8:00 position close to the nipple. I got my results yesterday and it is an intraductal papilloma. The doc wants to remove it and I have an appt for next Friday. I have never had any surgery and never been put under. I'm very nervous about it. Do you know if a wire is needed if a titanium clip is already in place? Could you please share any details you may have about it. Thank you so much!

Kathhon56

ty for sharing your experience with us!! I just had my L Breast Biopsy last week. 4 different reports later I'm totally confused. Argh. Went from 50/50% "suspect malignancy " to what I think I understand as a papilloma. Waiting for my DR to explain just exactly what were the findings. I'm over the moon thankful there was no maglinancy found of course, Amen to that but now just want to understand if it is indeed a papilloma, to remove or not??

~kathhon56

CameraGirl

This is exactly what I'm needing to hear - someone's personal experience of what ductal excision was like. My previous post "Stromal fibrosis with atypical lymphectasia" will detail my situation. I'll have to ask my doctor about the pre-op stuff. I really hope I don't have to go through that. I teared up reading it. My pre-op is scheduled for a week prior to my surgery so I don't see how all that could take place??? Thank you for sharing your experience!