26 y/o benign breast disease now "highly suspicious"

LMoon

Long time listener first time caller, here!

(TL;DR-- 10ish years of fibroadenomas now 'highly suspicious' due to calcification. Had US/MMO but am anxiously waiting for biopsy)

I was diagnosed with breast disease when I was 16 years old. Because I have a long history (~10 years) of all sorts of lumps, bumps & issues, I've used these boards as a resource many times. So, thank you to everyone who participates because I've found so much of this info to be incredibly helpful.

Anyway, things just got more serious for me and now I'd love some feedback.

About me--

I'm 26 years old. Both of my grandmothers have a history of breast cancer and my maternal aunt had ovarian cancer.

I can hardly even remember a time that I haven't had at least 10 tumors in my breasts. Many of them are large and painful. I've had routine ultrasounds every 3-6-12 months for about a decade.

In 2011 (20 years old) I had a triple excisional bilateral biopsy. They confirmed everything was just fibroadenomas.

In 2012 I started taking Tamoxifen. I only took it for less than a year.

In March 2017 I had a baby. My OBGYN discovered a new lump at my 6 wk postpartum visit. She was alarmed but I wasn't (so used to this now). She urged me to go in so I did.

June 2017 I had an ultrasound that seemed to cause more concern than usual. They told me to stop breastfeeding as soon as I felt comfortable and to come in 3 months after I stopped so that they could get a clearer view.

I stopped BF in December 2017. Tried making appointments with new doctors in LA but NO ONE CALLED ME BACK. EVER. It was infuriating.

Moved back to Chicago this month. Scheduled first avail appointment at Lynn Sage Breast Clinic.

Normally I go in for an US, it's fairly quick, the doc comes in to the room for a quick consult and tells me everything is under control but I need to come back in 6-12 months, and I'm on my way. Yesterday I went in and it took 3 hours. I thought the tech was new or something, but turns out she was just really concerned. I was taken into a consult room and was told I needed a mammo. I said "I was told I wouldn't need a mammogram until I was in my late 30's unless something was really suspicious?" and the doctor said "it is really suspicious. You NEED a mammogram today, but hopefully only a few images" well a few images turned into a LOT of images.

Basically, she said that I have very suspicious calcifications. She explained that calc can be totally normal and it can also happen to newer fibroadenomas. She said based on what she saw and my particular case, it definitely seems like it may be the early stages of cancer, and that I need to get a stereotactic biopsy ASAP. I had to talk with a nurse/social worker and it was a whole thing. Much more intense than any other appointment I've ever had at a breast clinic.

My biopsy isn't until the 18th, so I have 2 weeks to sit around and think about it. I know there are so many variables so I'm not letting myself worry too much by looking at WebMD or a bunch of message boards, but I am wondering if anyone has any insight or if anyone has been through anything similar? It's been in the back of my mind for a while that this day would come (or, a diagnosis would come). I'm less afraid, and more anxious by all of the waiting. I just want to know now.

waytooanxiousmommy

So very sorry you have to go through this. Really hoping for benign results for you. Still, whatever it is you will get great medical care and you will be ok. Hugs

Tmh0921

Hi

I started having breast issues in my late teens as well, with my first biopsy when I was 22. That biopsy was a fibroadenoma, and so were the next 11 biopsies that I had between the ages of 22 and 27. At 27, I found a new lump, like you I wasn't worried and neither was my surgeon as we'd been through this together too many times already.

I went to have an ultrasound, and ultimately a mammogram. The results were suspicious, so off to biopsy I went. To be honest, myself and my surgeon were still not too concerned and still thought it was a fibroadenoma.

My biopsy was on 12/3 that year, and on 12/7 my surgeon informed me that it was cancer. It shocked the crap out of the pathologist and him due to my age (27 at the time). I went back in on 12/22 that year for a lumpectomy and lymph node removal/biopsy.

In the end, I was diagnosed with an early stage, mid grade cancer. I ended up having surgery, radiation, and taking Tamoxifen. I am now 18 years out and am doing fine. I've even had multiple benign biopsies since my cancer. I've also had two babies after cancer.

I am telling you my story, not to scare you, but to let you know that even if it does turn out to be cancer it doesn't mean a death sentence. I hope you're biopsy comes back benign. Have you had genetic testing?

Tracy

LMoon

Thanks for replying, Tracy! I had genetic testing when I was pregnant to see what I was a carrier for, and there was no mention of anything related to cancer/breast health.

I'm also wondering, how quickly do doctors typically schedule a biopsy? At the time I was sort of in shock so when she said "July 18" I just went with it, but now I'm realizing that's quite a wait and I'm seeing that so many women were able to get it done same day or at least same week.

Rrobin0200

ok, first things first.. can you call and push up your biopsy appt.? Maybe get on a cancellation list?

Calcs can be nothing, or they can be an indication of early stage. The latter was me. But here I am, one year post op (bmx for DCIS) I was terrified, obviously. I chose a bmx just for my own peace of mind.

Sending you well wishes. Pls let us know what your outcome is.

LMoon

I called them and they said that I was automatically put on a list to be moved up if possible (that sounds good and bad) but they're booked solid. They moved me up by a day to July 17th which is my husband's birthday, so that's a bummer but I just want to get in ASAP. I called around other hospitals in the Chicago area to try to get in sooner and no one was helpful at all.

I've honestly been wanting a bmx for a few years now because of all of the stress, anxiety and uncertainty (and pain!) of having breasts so filled with fibroadenomas that it's hard to keep track of any changes.

Thanks for the support, I really truly appreciate it. I will definitely report back with any updates.

Oh, is it common to have other symptoms that aren't breast related with BC? I recently got a full workup and a dx of subclinical lupus, but the doctor was really uncertain about that dx and now I'm wondering if the fatigue and weird symptoms could be due to BC or something else? I know I'm getting ahead of myself here, but now that I have 2 weeks to think about this I'm really going to get deep into some of my theories.

mustlovepoodles

I haven't had quite the ordeal with breasts that you have, but I had calcifications in the left breast. Had mammograms every 6 months for several years. Even had a couple of biopsies, all negative.

As far as your fatigue, that's anyone's guess. I never had any symptoms of any sort prior to my cancer diagnosis (which, incidentally was in my GOOD breast.) Hopefully, they can get you in a little sooner. Not because I think you have BC,but I know how distressing this waiting period is.

LMoon

Wow, so you had all of those mammograms and biopsies in the left breast and then a diagnosis in the right one?! Life has a really interesting way of working out. I'm sorry you had to deal with all of that, that sounds like quite a rollercoaster.

Well, I have this biopsy on July 17 and I'm closing on our first house and moving on July 20. I'm honestly not sure which situation is going to stress me out more, but either way, the next 2 weeks are going to be a doozy. I'm really hoping they call me sooner with a cancellation/opening.

mustlovepoodles

Yep, i was really surprised when they found something in the right breast. I had never had any trouble with it, only the left.

You've really got a lot on your plate, don't you? No wonder you're so stressed! I hope they can manage to get you in sooner than July 17.

Tmh0921

Ask and see if the genetic testing you had included screening for breast cancer related gene mutations, if it didn't consider getting that done. Dates for biopsies depend on who is doing them. My core needle biopsies/stereotactic biopsies have taken a couple of weeks, but they are done at the imaging center. My excisionalbiopsies have been done within a week, but my surgeon does those.

With regards to fatigue, that can absolutely be related to cancer and/or anxiety/stress. Before my diagnosis I had bad fatigue. However, afterwards I had a lot of fatigue to to the stress and anxiety. If you've been dealing with these breast issues for a while the fatigue can be stress/anxiety

Okkate75

I'm not sure why Byron17 is telling everyone to stop seeing doctors on every thread today! But anyway! My fingers are crossed you get moved up on the appointment list. Until then, hang in there. Waiting for testing and results is the absolute worst. We're with you.

Moderators

Byron17, that is a personal choice. Are you a cancer survivor. Our boards are for people who are concerned about or have breast cancer. Thank you/

Egads007

*wonders what Byron is selling*

LMoon

I got my stereotactic biopsy yesterday. I met with a new radiologist at the breast center. She sat me down beforehand and said that I have two areas of concern. One area is only mildly concerning and most likely benign. The other area is *very* highly suspicious and appears to be atypical (at best) or cancerous (at worst). She believes that no matter the results, it will be treatable. She recommended we biopsy both areas and I agreed. I was on a tranquilizer so I just kept saying "Okay, great! No worries!" but now that I've sobered up all I can do is think about this. I just need more info. This waiting game is awful. I hate uncertainty. I am definitely the type who feels empowered by information and education, so getting somewhat vague info from these doctors and then playing Dr Google hasn't been helping. She said she'd call me in 24-48 hours.

Yesterday was my husband's birthday. Tonight we're celebrating but I am sore and distracted. On Friday we are supposed to close on our first house and move out of our temporary apartment (we've been here for 6 weeks since moving back from CA). This is supposed to be a happy time. I hate that I can't even pick up and hold my 15 month old daughter right now

During the biopsy they told me they had to do something that was going to cause me more bleeding, pain and bruising than usual but I'm not sure what it was. In the first few hours I bled through all of the gauze they provided me (like 3 large packages worth) and my ace bandages (and my bra and shirt). I paged the radiologist on call but they never called me back. Thankfully the bleeding stopped last night around 10pm (my biopsy was at 9am).

Anyway, I'm just rambling. I am so tempted to call them to learn what my BIRAD was. They never told me and it's not on the report I saw. It doesn't even matter at this point, but I'm just craving information.

Thanks for reading.

Mkriddle

I am about to get in your situation. I have my biopsy tomorrow and I nervous as heck.My BIRAD was 4 but not sure to what extreme. I am super worried but I'll be ok! I hope you got good results