Breast pain & Bloody nipple discharge

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Sunshine88
Sunshine88 Member Posts: 4
edited March 2021 in Not Diagnosed But Worried

I'm hoping someone can give me some guidance or input as I feel like I'm running out of options.

Let me start by saying I'm only 32 years old I'm not pregnant. No kids. Not breastfeeding.

I'm high risk due to family history and I have heterogeneously dense tissue. I'm supposed to go for routine screenings every 6 months. A few years ago, I had an awful experience with a male doctor telling me "you're just being paranoid based on your family history," which was uncalled for but it made me quite frustrated so I stopped going.

Last summer, I started experiencing breast pain and noticed swelling near the side of my breast and underarm. It progressively got worse in the fall. My 3-D screening mammogram appeared normal. Shortly after, the pain became so bad that I was immediately in tears. I've monitored things. The pain is much less around the time of my period. I've tried eliminating caffeine, alcohol, etc. I've tried primrose tea & vitamins. Anything they suggest, I've tried it. Nothing seems to help.

Around the end of October, I started noticing bloody nipple discharge and I've had it everyday since. Some days are worse than others but I'm forced to keep bandaids on hand. After that, I started keep track of the odd symptoms I was noticing on a daily basis. It seemed like there was something new everyday. I finally found a GYN who could squeeze me in as every other place had a 2-3 month waiting list. The GYN immediately referred me to a breast specialist/surgeon for an MRI.

As time went by, I was noticing red spots/rash, I was itchy, the skin appeared dented in a few areas, and I had an uncomfortable burning sensation in my breast and nipple that was incredibly painful. I had weeks where I would lose my appetite, become dizzy and nauseous, and constantly felt fatigued. In the midst of everything else, I received abnormal test results from my GYN on December 3 indicating significant cell changes putting me at a higher risk for cervical cancer so I now have to go in May to retest and monitor things. My head is spinning.

The breast surgeon decided to start over and sent me for another 3D mammogram & Ultrasound. Both appeared normal. The surgeon performed a punch biopsy. Normal. But she still wasn't ruling anything out.

She started to push me to consider surgery: duct ectasia. She wanted to remove the ducts and more tissue to get further testing. I have continued to put that off as I wanted to see about an MRI. She was onboard and referred me. I was so hopeful that we'd get answers & this nightmare would finally be over. Unfortunately, no answers were provided.

I received a letter last month stating that my dr is leaving April 7. She has yet to say that to me and I have no idea what dr I might have to transition to or what to do next.

My doctor has now given me the following options to consider:

  1. Continue to monitor things for 3-6 months & redo imaging
  2. Surgery

The first option concerns me as I'm still in pain and bleeding everyday. I'm scared to wait that long. I'm not confident in the procedure and find it concerning that nothing is being seen in these tests / images. I believe there are a few other options though:

Additional options:

  1. Take a break from appts to breathe for a minute. I'm getting overwhelmed and not sleeping very well.
  2. Prophylactic mastectomy, cut my high percentage rate & eliminate the need to do imaging every 6 months. (I'm only 32!)
  3. Get a second opinion of my images - not sure how that works though ?

I'm hoping someone can give me some input. Anyone who might have experienced something similar or has suggestions for what I can do or look into at this point. I just want to know what's going on and end this nightmare.


Thank you in advance!


Kris

Comments

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited March 2021

    Kris - I'd make an appointment to meet with another doc & get a 2nd opinion. EVen if your doc weren't leaving, I'd go get a 2nd opinion. And maybe even a 3rd opinion with a different doc. Hopefully you've kept copies of all your imaging & testing so far, so you can take those with you. But sure - take a break & breathe first.

  • Sunshine88
    Sunshine88 Member Posts: 4
    edited March 2021

    I appreciate your response so much! I'm a very private person and I've only told a handful of close friends what's going on. I was hesitant to post my story but I know what I need right now is to turn to people who understand and who can provide insight and advice. It's been exhausting & mentally/emotionally draining. I can't believe there aren't any answers. I just know this isn't normal and I don't feel I can or should ignore it..

    Thank you again! I appreciate you!

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited March 2021

    I didn't tell ANYONE until I had a firm diagnosis and treatment plan set up. Even then - I maybe told 4 people including my grown son so he could make arrangements to fly in for the surgery, & my ex-DH because I'd need him to drive me home from some of the tests.

  • Sunshine88
    Sunshine88 Member Posts: 4
    edited March 2021

    I understand. I didn’t say anything until 5 months after everything started. Once the pain got worse and the bleeding started, and I started getting juggled around between doctors offices, I felt overwhelmed & emotionally drained. I was internalizing a lot and needed to talk to someone about it other than a dr. It was hard to do because I don’t want to cause anyone to worry or panic. The few close friends who know have been an amazing support system as I continue to work toward finding answers. I wish I had found this forum sooner..

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited March 2021

    I'm so sorry ypure going through this. Would it be better to get this moved to "Not diagnosed but worried" since you haven't gotten a cancer diagnosis? There's more traffic there, so you might get responses from people who have been through a similar experience.

  • Sunshine88
    Sunshine88 Member Posts: 4
    edited March 2021

    Thank you for your message. I wasn't aware that was a category on this site as there are so many! They have moved my post accordingly. Thank you for bringing that to my attention. I appreciate your feedback and the response!

  • LivinLife
    LivinLife Member Posts: 1,332
    edited March 2021

    Hi Sunshine88! I totally agree with MinusTwo on getting another opinion or more.... I hope you are able to do that. Hopefully you'll get some answers - I can't even imagine what you've been going through.... Please keep us updated on new developments.... We're obviously here for support along the way too!

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