Paget's Disease with negative biopsy?

ArizonaRN

Hello,

I'm looking for some perspective on my current situation. I'd really appreciate some opinions and I'm sorry it's lengthy.

To start, I'm in my early 20's and fairly healthy. I have a slight family history of breast cancer, one aunt on each parents side. In June (4 months ago), I got what I thought was just some sort of irritation or rash on my nipple and areola. I had just been at the beach so I thought the salt water or sand or something just irritated it. Fast forward to August and it's still there. I woke up one day mad at myself for ignoring this for so long and very anxious to get rid of whatever it is. I couldn't get an appointment with my doctor for 3 weeks but I made the appointment anyways and went to urgent care that same day hoping to get antibiotics or something. The urgent care doctor looked at me and with all honesty told me she thought it was a disease she had never seen in person and had only read about. She left to consult with the other doctor and they told me it looked distinctively like pagets disease. She gave me a prescription for antibiotics and told me to keep my doctors appointment and not let this go ignored anymore.

Of course I went home and did my research and started freaking out. Three weeks later, I finally saw my doctor. The antibiotics didn't help at all and the culture they took didn't grow anything. My doctor looked and me and before I could say anything, she said she didn't want to scare me but it looked like a type of nipple cancer, pagets. She gave me referrals for a breast ultra sound and breast biopsy.

My breast ultra sound was negative for any tumors, which I was very pleased about. The surgeon looked at my breast and said he didn't think it was pagets but we should still go ahead with the biopsy. When I returned for the biopsy results, he said he had mixed news. The biopsy was negative for pagets but he also felt it was somewhat inconclusive. He gave me a referral to dermatology and told me to come back if there were still no changes. He told me, don't ignore this.

This week I met again with my personal doctor. She went over the results again with me and also told me that we may want to consider doing another biopsy after I meet with the dermatologist. I meet the dermatologist in a little over a week.

I don't know what to think. I felt optimistic that the biopsy was negative, but everyone else seems still concerned. If this isn't paget's, an infection, or eczema, what could it be? Any perspective?

MelissaDallas

What exactly does the "inconclusive" biopsy report say

imkeiki

How are you doing? I am not a doctor nor an expert but thought I'd share my story with you with the hopes that it will help.

I was diagnosed in September/October 2015 with Paget's disease at 66 years old. Even at my age, earlier this year I experienced similar symptoms, fears, concerns, etc., as you & others have expressed. I would never have thought that this would lead to Paget's diagnosis & that I would be writing on this blog. While each situation is different, I opted for a complete mastectomy & am now recuperating & awaiting test results later this week. It is believed that I have caught this strange malady in it's early stages. I had 1 lymph node biopsied & it is clean as were my mammograms & ultrasounds. As I have a defibrillator surgery was somewhat difficult. I have had no pain & I am recovering nicely. At least, so far, so good. I would suggest a second opinion & if necessary, a 3rd opinion. My first breast surgeon opinion was a little too casual with few details given other than nipple & areola removal and PERHAPS radiation. I got more info by internet research than from her! There was no follow up from her office.

My 2nd opinion was at the other end of the spectrum & came from a breast cancer specialist, researcher, & PhD affiliated with Fox Chase Cancer Center in Philadelphia. She is older & wiser than my first opinion surgeon, saying if she only removed the nipple & areola, there is a 90% chance of an underlying cancer in the breast, & because of my defibrillator, she would not do radiation without my having the defibrillator moved (I do not need another surgery, thank you very much!). Radiation & defibrillator do not mix & with a weakened heart, radiation could do more damage. Reconstructive surgery was an option, but would be of concern & difficult for me. After reading more about reconstruction, I opted to cancel my consultation appointment -for me I do not need another foreign object in my body to contend with. I learned a lot.

My words of wisdom: don't wait, get another opinion, ask lot's of questions & become familiar & comfortable with your results. You are not alone & yes, this is a scary & difficult time but you will get through it.

Moderators

Imkeiki-

Welcome to BCO, and thank you so much for sharing your story and experience!

The Mods

Foxyd

Hello, i hope you are doing well now. The reason i am replying is because i am going through a similar situation. Biopsy was negative but my breast rash wont go away. I already went to the dermatologist 2 times and rash comes back. What were your end results?

Moderators

Hi Foxy, and welcome to Breastcancer.org!

It's been a few years since Arizona posted her comment regarding the biopsy, and she never came back with her final results, so they were probably benign. Anyway, you can try sending her a private message and see if she is still receiving messages from the community. Good luck!

The Mods