Getting a second opinion on birad 5 but benign biopsy?

Ktktbird360

I was given a birad rating of 5 after my mammo and ultrasound. At this point I am scheduled to talk with a surgeon and I've been told that they will probably recommend a lumpectomy. I want to get a second opinion from ku cancer center before I have surgery. They gave me the choice of seeing a mid level person like a nurse practitioner or waiting until the 17th to see the dr. Should I try to get in sooner to get my rating established? It would be the radiologist who would give me the rating, correct?

I'm overjoyed that my biopsies are negative but also suspicious of false negatives from the rating I was given preciously.

Anyone have experience with this?

MelissaDallas

What was the benign result of your biopsies? Did the facility refer you because of discordant results, or were the results something like sclerosing adenosis that can look like cancer on imaging, but isn't?

I would wait until the 17th to see the specialist instead of a NP. Although I know it feels urgent to you, three weeks is not that long and only in very rare situations would a few weeks make any difference.

Ktktbird360

she just said it was completely benign. They referred me to the surgeon here in town because of the discordant results.

I'm looking for a second opinion independent of the facility here in town.

Thanks for the advice. It's all so much.

MelissaDallas

You need to get & keep copies of all your pathology reports & mammograms/ultrasounds/MRIs for future use & to be able to provide other providers.

"Benign" is not a pathological diagnosis as to what the samples were or what was on your path report, or at least that is only part of it. Benign as in normal breast tissue (they didn't biopsy right spot?) Benign as in fibroadenoma? Benign as in ??? You need a copy to know exactly what the report says.

Ktktbird360

Ok, thank you.

windingshores

You can often access and print records from patient portal(s) and if your provider doesn't have one, just go to medical records and get them directly. 

Does the NP appointment mean no MD appointment or is it possible to do both? If so I would do both.

Definitely get a second opinion!  You'll feel better.

Ktktbird360

so, I have my records coming to me, I have an appointment with the dr bc she had already seen my films and apparently wanted to see me. Hoping that that doesn't just mean "she's already spent time on you and wants to be paid" 😆 Hoping that someone cancels so I can get in sooner.

I was bummed that the nurse gave me the stat that 80% of all biopsies come back benign. While that would be comforting to me if I wasn't rated a 5, I don't appreciate being given stats that don't really apply to me. 😡 At least acknowledge that maybe I'm one of 5% if it is confirmed to be benign and birad 5. 😒

leaf

You have good cause to be angry: I would be angry too if I was told statistics that don't apply to me. That remark was NOT HELPFUL AT ALL.

Obviously, some medical people are better clinicians than others.

Feel free, if it suits you, to go out and buy a Halloween soft rubber spider (or whatever) and stomp the rubber toy to death. That's what I plan to do, and pretend the toy is my hated breast surgeon who was not into verifying the right information, dismissive of my traumatic experience, and informed me what her action about me was going to be, without any explanation how she came to that conclusion.

Ktktbird360

aw man. That's hard. This is such a crazy situation. Getting talked down to is one of my triggers. Just be clear with me and don't pretend things are different!

Do you have to stay with that surgeon or can you switch?? I hope the dr isn't like that... 😰

carmstr835

I have had a second opinion radiology conference (my BiRad score was 5 as well), 2nd opinion radiological oncologists regarding radiation treatments, 2nd opinion breast surgeon, and 2nd opinion oncologists. I take the info from all of them and then go with whoever will do what I want them to do. I got further info from the radiologist consult, the cancer was present in both breasts. I would not have known otherwise. The radiation oncologist, I wanted information regarding proton therapy, but decided against that in favor of my original radiology oncologist, not sure that was a good idea, I wished I would have asked about having 2 machines in case of breakdowns, the breast surgeon's 2nd opinion I decided to go with the 2nd opinion because he listened to me and I liked and trusted him more, the oncologist 2nd opinion, I really liked and his suggestions have directed my treatment, but I am going with my original oncologist, I still run everything by my 2nd opinion oncologist and the treatment plan has changed twice on his suggestions. I believe we owe it to ourselves to get all the information we can.

Ktktbird360

I'm glad it's working out for you to have the resources you have!

I'm feeling so much more confident in the biopsies... Maybe I really am one of the lucky 5%?? 😱

I have my 2nd opinion mammo and ultrasound on the 11th (that'll be good to see what they rate me!) and then appointment on the 17th. I dropped the appointment with the local surgeon bc she's a general surgeon so I most likely wouldn't want to go through her for surgery anyway.Praying that they see the truth and I can either move on in peace or get to business.

MTwoman

Ktkt, ALL breast surgeons are general surgeons. there isn't an actual "breast surgeon" designation. What you want to know is how much of the surgeon's practice is made up of breast surgery; what type of breast surgeries he/she performs and what additional training did he/she do in breasts? (i.e. fellowship or work at a breast center in residency etc)

Ktktbird360

thanks for the info! I've switched to ku cancer center which is rated really well so I'm pretty confident I'll get good care there. Thanks for the replies.

carmstr835

Ktktbird360,

I also went with a cancer center. I felt they had the most experience with my type of cancer and they are very nice. I believe I have much better treatment than if I chose a local hospital that treats everything. I believe I have the best treatment. Good luck and I hope you feel confident in your treatment. If not, remember you can still get a second opinion even after you choose where to be treated.

Ktktbird360

thank you. ❤️

Suburbs

K, what about an MRI and an MRI guided biopsy? Mammograms are not always effective in detecting abnormalities in dense breasts. When there are questions, a second opinion is a good idea. Hope you reach a good outcome and peace of mind

MamaBee23

I also had a bi rads 5 mass in my breast. Core needle biopsy (6 samples) came back benign. Radiologist found it to be discordant. I had a lumpectomy and results came back yesterday completely benign. It was 6.5cm x6cm x2.2cm. Imaging had showed 4.5cm x3.3cm x2.2cm. It was much bigger! So my friend...it is definitely possible for a bi rads 5 to be benign. I wouldn't have felt satisfied without the lumpectomy though. I'm praying for continued benign results for you!

Ktktbird360

mama bee thank you for letting me know your story!! That's a huge lump!! They are saying that it's one of three lumps but the biggest is just over 2 cm. What characteristics did yours have if you don't mind me asking?

MamaBee23

It was hypoechoic, irregular and spiculated with shadowing...from what I can recall. Basically all not good. The radiologist cried with us after my CNB because she felt so horrible for me. That's how certain and concerned she was. So, very scary at the time. Yet, it turned out to be benign...so it is definitely possible!

Ktktbird360

wow. That's crazy. Mine too. My dr said everyone has been surprised that my biopsies were benign. Had me signing paperwork for treatment for cancer... Then all on hold. 😬

So glad to hear of your results! Thanks!

MamaBee23

Get your pathology report and find out how many samples they took and from which lumps. The lumpectomy wasn't fun but was manageable. I don't regret doing it for peace of mind

Ktktbird360

I actually looked at it today. They took from the one that looked most suspicious. They took 10 samples!! There is a crease in my breast and they found the lump that goes with it. I have such lumpy breasts that it's hard to know what is what. 😜

They didn't tell me that I have an enlarged lymph node that's almost an inch. The report said it looks benign though.

MamaBee23

Wow 10 samples from a 2 cm lump?!!! Was it a core needle biopsy or a fine needle?

Ktktbird360

core! It wasn't too bad except emotionally. But one of the samples hit a nerve and it shot through the entire breast.

MamaBee23

That is a VERY thorough doctor! I had 6 samples of my large lump and I was told that was a lot.

10 samples of a 2cm lump and all benign...that is a wonderful sign! I'm sorry it was painful The numbing needle was the only painful part for me. The rest was mostly emotional as well.

Let us know how things go forward for you. You'll be in my thoughts and prayers!

Ktktbird360

Ya. They told me they'd take 4-6 and then they just kept taking them! I as thinking maybe they wouldn't have to do the lumpectomy 😂

Thanks! I'll update on Wednesday after I get the second round of imaging.

So glad to hear that yours has turned out benign!!

Ktktbird360

(also, thanks for the prayers!!)

Ktktbird360

This is what my pathology report says. Would anything in this fool the mammogram and ultrasound? seems unlikely that they missed it with so many samples!

- BENIGN BREAST TISSUE WITH STROMAL FIBROSIS, FOCAL DUCT HYPERPLASIA AND COLUMNAR CELL CHANGE.

Ktktbird360

I thought I'd update...

I had a 3-d mammogram and ultrasound at a cancer centerand they've downgraded my birad rating from a 5 to a 4. (Yaaaay!!!!)

I'll be talking with the surgeon on Tuesday to see what she recommends.

They are thinking it's a radial scar so I'm super hopeful that I'm part of the majority of those that are benign.

Does anyone know if radial scars are a usually given a birad rating of 5?

This whole experience has really opened my eyes to the horror of cancer. I've always heard that it's no big deal and that you live if you get it so it's no big deal. Reading all of your stories and seeing what is done, is so humbling. I'm praying for all of you to be surrounded in Gods love as you go through your treatments and procedures. God bless you all.

MelissaDallas

Radial scar is one of several things that can look like cancer on imaging so end up as a 5, but at that point they don't know it is a radial scar.

Happy for you