Bi rads 5, benign biopsy...still cancer?

MamaBee23

I'm wondering if anyone out there has experienced what I'm experiencing. I have 2 large lumps/thickening in my left breast. Unilateral, uniduct yellow discharge...small amount, only when expressed. Pain/discomfort in breast, occasionally slightly swollen areola around nipple, pain in shoulder, collar bone area, back/shoulder blade and underarm.

Found lumps so went in for my first ever mammogram (I'm 40 years old). Mammo was clear. Went for ultrasound the next day because lumps are big and palpable with increasing tenderness. Ultrasound tech only found a few small cysts but I urged her to keep looking. She ended up finding a suspicious mass. 4 1/2cm x 2 cm x 2.2cm. Other large mass/thickened area couldn't be seen on scan. Mass found was rated bi rads 5 by the radiologist. Core needle biopsy was done days later. Two days later I received a call from the radiologist that the biopsy was essentially "benign" but because the results were discordant with the bi rads 5 finding, I will have a full excisional biopsy (lumpectomy) of that lump at the end of this month. They found FEA (flat epithelial atypia) and fibrous mastopathy (a rare inflammatory but benign tissue normally found in Type 1 diabetics). FEA doesn't normally present as a lump. I am not currently diagnosed with diabetes but will be tested this week.

My fear is that I still have the other large lump/thickened lumpy area, the suspicious nipple discharge and both the biopsied lump AND the "elusive" lump are getting harder/larger. My breast is more painful...now over three weeks after CNB. Shock pains, etc...too. Also, a new VERY firm, lumpy area has appeared in my right breast now as well.

Breast surgeon won't order an MRI because she says that it will delay my surgery date. I have a bilateral ultrasound scheduled for tomorrow that I PUSHED a different doctor for and already had scheduled. If they don't find anything or don't biopsy anything else, my surgeon will biopsy the other palpable areas during my lumpectomy. I am SO scared and frustrated!

Has anyone had a bi rads 5....had a benign finding...and THEN had it show up as cancer anyway?

I'm a wreck most of the time. I'm Mommy to a precious 3 year old boy and I'm terrified at the thought of leaving him.

windingshores

It sounds like things may be okay for you.

But just wanted to say that even those for whom the imagine results are actually cancer, our kids don't lose us anytime soon

Once you have an answer you will feel better. In the meantime I recommend Netflix and Ativan if you need it!

beach2beach

MammaB, I wish you the best in the findings and hold onto the fact that so far it has been benign.

I echo what windingshores said, you will be there for that little one. Believe that.

Shoregirl

Praying for you MamaB 🙏

eggroll

I had a Birads 5 with a normal biopsy, got the good news followed by the bad news that it was "discordant." Excisional biopsy found my cancer. Make sure you get a good surgeon. Mine took the lump on the wrong side of the wire at first, so I had a double lumpectomy while I was still under.

MamaBee23

eggroll,

What was found in the core needle biopsy samples? How many samples did they take?

MamaBee23

Thank you so much for the kindness, prayers and support! I'm trying so hard to remain hopeful. So grateful for all of you!

eggroll

Hi MamaBee23, they took four samples. Each one had perfectly normal breast tissue! Can you imagine? We saw on the ultrasound the needle going right into the tumor, too. My general doc whose mom was going through breast cancer just ahead of me told me that because it was so small, it was pretty hard to target. It turned out to be 7mm when they surgically excised it. Also I noticed "scirrhous" as one of the words in my pathology, which I think means hard as a rock? So maybe that had something to do with it. Anyhow, the doc said the way it looked in the mammogram and ultrasound, it should have at least been atypical. So the normal tissue was the giveaway. Thank goodness for that, I seem to be very lucky with a "sleepy little cancer" caught early. I still feel haunted by the chance of relapse. Couldn't tolerate Tamoxifen or the AI's so Oncotype has like a 20% chance of distant recurrence without the AI meds. Cancer is really a mindgame, ain't it? I do enjoy each day more than I did before it, so that part is good.

MamaBee23

I now have very small bumps on my collarbone. I'm assuming swollen supraclavicukar or infraclavicular lymph nodes. Another strong indication of malignancy. It's Sunday so my doctor and surgeon are not in. I'm FREAKING OUT! I feel like all of these doctors have not listened to me!

Has anyone experienced these swollen nodes? They're very small.

mommakat

Hi MamaBee,

Sorry you're going through this. I'm in a similar boat. Had Birads 4, benign CNB results, that were believed discordant. I have my surgical excision next week, FINALLY. I've been waiting since July!

I never had a lump. Went in for my normal first mammo @ 40, and they found architectural distortion. Since then I have had pain in my breast. Now, I think it was there before and I didn't pay attention to it, BUT, it's very possible that I'm imagining it. I'm hyper aware of every symptom. I go back and forth convinced I have cancer, but then get to a place where I look at the statistics etc and think I don't. It's a horrible mind game we play with ourselves. Last week I was feeling so run down. I went to the doc and they said I have bronchitis. Of course, in my head, it's the cancer and it's spread to my lung. Today I have a headache, I'm sure it's in my brain.

Hopefully tomorrow I'll feel more rational.

As for finding someone here who had Birads 5 and not cancer, remember we're on a cancer support site, so the chances of them being here are less than the general population. And like the other ladies said, no matter what the results are, you WILL be there for your little one.

Wanted to let you know you aren't alone with the crazy things that go through our minds. Focus on the good, and try to breathe and stay calm. Praying for you! Keep us posted!

MTwoman

MamaBee, it sounds like your doctors ARE listening as you've had imaging, biopsy and they have actually scheduled a full excisional biopsy at the end of the month. It is possible, that with all of the heightened anxiety from biopsies, discordant results (so still not knowing) and then an excisional scheduled, that you're "body scanning" at the moment, and focusing on anything that seems a bit different. It isn't uncommon, but causing yourself to freak out right now isn't helpful to your mental health and won't change the ultimate outcome. I'd recommend trying to keep your mind off of worst case scenarios and focusing on what you know. You have areas of concern that are going to be excised at the end of the month. After you get the pathology back from that procedure, you'll know more. Until then, using distraction alternating with relaxation would be your best bet. You'll need to be able to take in and process information, and 'freaked' out and exhausted people can't do that very well. We all know how difficult it is, but do try to use anxiety reduction techniques to take care of yourself while you wait.

MamaBee23

MTWoman...yes, I have thought about how many of my symptoms could be related to me over scanning....however, many of my symptoms began long before I had any concerns or awareness of my lumps.

My concern about not feeling heard is that none of my doctors are willing to do an MRI or PET of my breasts or of my abdo-pelvic area despite my long list of symptoms (large palpable masses, unilateral uniduct serous discharge, rapid weight loss of almost 40lbs which began before I discovered the lumps, abdo-pelvic pain, zero appetite, etc...) and many months of being unwell. Now, I have small swollen nodes appearing on my collarbone only on the side of the breast with two large masses, the larger of which (despite being large and very palpable) has not made an appearance on mammo or US and has not been biopsied. I don't think it's unreasonable to ask that an MRI be done.

I had to push HARD for the imaging I've had. The mammo came back all clear and then I had to push even harder for the ultrasound that found my bi rads 5 lump. Also, I had to urge the technician to continue trying to find it or she would have given up. I was then told that it was Cancer during the CNB and the radiologist and technician both cried with us...only to get a call days later saying that I had benign findings that don't make sense because I'm not diabetic and the radiologist still thinks it's possibly malignant. My breast surgeon didn't take a sample of my nipple discharge to test, refused any further imaging and scheduled the excisional biopsy of the ONE lump that came back benign...saying she would try and do a CNB of the other lump during my surgery.

Needless to say, my trust in the care I'm getting is not great.

I don't have a history of medical anxiety. I don't generally panic. The symptoms and the length of time I've felt unwell without answers have been overwhelming. I meditate (I'm a meditation teacher), walk for an hour every morning and keep busy at home with my little one and my husband. None of that really takes my mind off of the fact that my medical team is not doing everything they absolutely can to figure this out a little more quickly. They may all be mostly convinced that this is all benign...but if they're wrong, and it is spreading...it's my life, my family and, most importantly, my 3 year old son that will suffer.