Biopsies negative but after lumpectomy positive

AnewBeginning

Hi

In 2011 I was dx with DCIS with a tiny microinvasison. I have been going for my Ultrasounds and mammos every 6 months and also a MRI so in May of 2013 my Mammo showed a mass. Biopsy was done and it was negative. Continuing to go every 6 months and being told there was no change I was thrilled. In Dec of 2015 I had Ultrasound and it was found that the mass had doubled in size and I had a swollen lymph node under the arm. They did a biopsy on the lymph node and that was found to be negative. My doctor didnt think it was cancer but of course I was scheduled for another lumpectomy Jannuary. The biopsy this time came back positive for cancer on both the mass in my breast and the lymph node. Two weeks ago I had a masectomy with 21 lymph nodes in total tested and 4 of the lymph nodes tested positive.

I just dont understand how two biopsies could be wrong and how this cancer has gone so far so fast. Has anyone else ever had this happen? I am now faced with stage 3 cancer.

I didnt proofread this post before I posted but edited the lymph node count correctly.

farmerlucy

Holy Crap Anew! That is sickening. I'm so sorry. I am speechless. I did have two biopsies that didn't find my invasive cancer, but I opted for a PBM and it found it. Oh my dear, this really sucks.

Nancy2581

I echo what Farmerlucy just said. Wow! I am so sorry Anew. Wish I had answers for you but I don't. Geez I really hate this rotten disease. Hugs to you

Nancy

lisa137

Anew, I didn't have a biopsy that came back false-negative, but I did go through the hell of being told after both mammogram and ultrasound that the changes in my breast were just "dense breast tissue," and that I should come back in 6 months, only to find in 6 months that the "dense breast tissue" was a 5+ centimeter tumor with 11 of 22 nodes posiitve, including one that was actually completely replaced by cancer. So I do know the shock of going immediately from "probably just fine" to "stage III breast cancer." All I can tell you is that the best thing to do is work towards putting all that behind you--the anger etc., because there's nothing we can go back and do differently now. Easier said than done, I know (from experience,) but true, nonetheless. Put your energy into dealing with what you do have now, and roll with the punches. March 31st will be one year since I finished chemo, and I'm feeling pretty good these days, physically, mentally, and emotionally. And, I am SO sorry this happened to you!

AnewBeginning

Lucy Im beginning to wonder what good biopsies are. Of course I know I cant go back but should have had a masectomy 4 years ago.

Nancy, hugs backatya!!

AnewBeginning

Lisa,

Im sure it was devastating for you too! Im happy you're done with you tx and doing well. I should be starting tx after Easter but waiting to see if insurance will pay for the perjeta drug which is only approved before having masectomy. I try to move forward but am haunted but how this could happen.

lisa137

Oh, I know, I know. I was haunted, too. And angry and bitter and....well, you know. And angry that I had been told in the past--in a pretty light-hearted "this doesn't matter" tone of voice--that I had dense and "ropey" breasts. Not once did anyone ever mention that this could make mammos less accurate for me. And when I went for that original diagnostic mammo and ultrasound, one of the techs even said "It feels like a little tennis ball in there!" So yeah, for quite a while I was really mad that they dropped the ball (no pun intended,) and sent me off with the "dense tissue, come back in six months" thing. I'd be willing to bet that if the tech who said it felt like a tennis ball had had any say-so in the matter, SHE would have sent me for an MRI and/or biopsy. But you know.... spilled milk, and all that. It is what it is. Anyway, I said all that to say this: You will move forward, but yep, it's going to take some time, and you---and I---have every right to be angry.

KimbytheSea

I'm afraid of a recurrence. Three years out and they just found two calcifications in my right breast that have been there since 2010, but have never been looked at closely.

I, too, have very dense breasts and "we could be missing a small mass."

Great. I do not want to go through this again. I'm so depressed. And what have they missed? I had the sneaky lobular cancer, too. I can't seem to pull out this sadness and fear. And I'm not a fearful or sad person. It's just getting to me.

lisa137

Kim, I think we're all afraid of recurrence. To be honest, that's exactly why I chose to have a BMX within moments after I was told that my biopsy was positive, and I never reconsidered that choice. That said, please please keep in mind that once we've had cancer, they really check us a LOT more closely, and anything new, or any complaint, is reason for them to need to rule OUT cancer. So don't let it freak you out every time it happens or you'll worry yourself silly. I know this not necessarily from my own experience, but from that of my mother, who had uterine cancer in the 70s and DCIS in the 90s. It seems like if she stumps her toe they have to rule out cancer... Yes, that's an exaggeration, but not by much! And she's in her 70s now, and doing fine.

And yeah, none of us wants to go through that again. But, if we have to, we can, and we will. Of course it's getting to you. It sucks. But hang in there and don't let fear and anxiety rule you. If all else fails, or you find that you just can't shake the fear even if this turns out to be nothing, consider talking to your doctor for something for the sadness and fear. "Better living through pharmaceuticals." It worked for me! You don't have to feel this way.