Many tests but no true diagnosis yet

Oklagirl

Within the last month and a half...Ive had a mammogram...a diagnostic mammogram, 2 ultrasounds and an MRI. All I know at this point, is I have a solid mass and a concern with my inter mammory nodes. After the MRI last week they want to do another MRI with the radiologist present this time and a direct ultrasound. (I'm not sure what a direct one is)

My concerns are...currently I have a biological sister that has been diagnosed with breast cancer, during the last MRI I became nauseated and why so many tests with no clear diagnosis.

Has anyone else had these many tests? Does anyone know why they keep testing?

farmerlucy

Will that be an MRI guided biopsy? Sounds like they are getting close to figuring things out. It is tough to find anything in dense breast tissue - my BS said it was like trying to find a grain of tapioca in a bowl of pudding. The MRI is absolutely the best to find things. I hope you get some answers soon.

MTwoman

Oklagirl, sorry that you're here without a good understanding of what's going on. It is good practice to get a copy of any imaging report for your records. If you call your imaging center(s) and ask for copies, pay attention to the impression and recommendation sections and the BIRADS score. These pieces of information will help us help you better understand. The BIRADS score correlates to the potential risk of a finding based on it's characteristics. If you post any confusing language here, we'll help you figure out what's going on. Good luck!

Oklagirl

Thank you...I just got a letter from my Doctors office stating I was being referred to a surgeon. I have called twice to get a reason why instead of the other plan of a another MRI and Ultrasound. No reply to my 2 calls. I will get my report Monday and post those things you suggested. Again, thank you.

Blair2

Seems like they should have done a biopsy on the concerned mass, then an MRI. Once the biopsy is done, it will determine whether you have a cancerous mass. The MRI looks for other spots, and usually finds them, but most are non-cancerous. It’s to make sure all questionable spots are discovered before a surgery. Hope your situation isn’t serious. The waiting for test results is so nerve racking! Some of these doctors are terrible at explaining things in a clear manner, which makes it more frustrating.

Georgia1

Just chiming in to say that I agree with everything that has been said. Please do call the testing facility and ask for the reports on all of those tests. There are good resources online for deciphering them and we are here to help as well. Knowing what's going on is the first step.

Oklagirl

I was able to get the MRI report. Findings are a BiRAD 4 with possible breast malignancy. It is 6mm and 2 inches deep. There are actually 2 nodules but only the one was really addressed in the report. It has an iill defined border. I have been referred to a surgeon and Im guessing for a biopsy at some point. My appt is Nov 21st...which seems like a year away. Ugh!

I am so thankful for all the responses on here.

Oklagirl

Thank you so much...as you can see I got the MRI report.

Worriedwaiting

We are schduled on the same day for biopsy, it seems like a year away. I have had the diagnostic mammoram, ultra sound and MRI as well. Trying to decipher the reports looking for clues that would point to everything being all ok has driven me to the brink! Good luck to you 😊

Oklagirl

Worriedwaiting...I so understand what you are going through. Hopefully some of the other ladies can add some insight as I am so new to this. I'm not scheduled for a bopsy yet, I just see the surgeon on the 21st to see what my next step is. I will be praying for you.

MTwoman

Okagirl, BIRADS 4 has a positive predictive value of around 20-40%, which means that 20-40% of the findings with BIRADS 4 characteristics turn out to be malignant. Try to take everything one step at a time, as best you can. You've got your biopsy scheduled, so there isn't anything else you can do about this right now. Try to distract yourself and good luck for b9 results!

Oklagirl

Update...just saw the surgeon today at the Breast Cancer Center. They are scheduling a Guided MRI/biopsy. She said right now while it is small it is mimicking lobular breast cancer...but we won' know for sure until the biopsy. Waiting is horrible and even after the biopsy it will take a week for the results. Geeeez!

farmerlucy

Oh man. What a long wait for you. The screening gets old AND expensive. I hope you get answers very soon.

Small is good.

Waiting with you.

Oklagirl

Farmer Lucy, thank you. The support is very much welcomed. I guess it will be another 2 weeks....ugh.

Gosh I see what all you have been through....I think I'll quit grumbling. 🙁

Oklagirl

Well ladies, I had my stereotactic biopsy finally this past Wednesday. The vacuum malfunctioned and it caused me to hemmorage. While that was very scary...and just completely strange, they were able to get the tissue they needed. I got my results yesterday. I have Grade 1 Invasive Ductal Carcinoma. There is another area of suspicion they feel needs biopsied however they cannot do it because of the large hematoma that was created during the biopsy. Im now waiting from a call Monday from my surgeon who referred me to OU to decide on my treatment plan. This is definitely a journey because I had hopes of it being in that percentage group of being benign.

Georgia1

Ho Oklagirl. So sorry about your test results. Sounds like you had an MRI guided biopsy? When you get the full report you should know the size and the ER status, which will help you make a treatment plan. I know this all feels so weird and shocking, but do know that breast cancer has great treatment options now. Thinking good thoughts for you and hope you get some rest.

farmerlucy

What terrible news to get anytime, but especially the week before Christmas. Bah humbug. Grade 1 is good news. You’ll be in great hands at OU Med. Take things a step at a time. Sending you a gentle hug.

Oklagirl

I certainly don't want to be selfish because I realize there are so many more women alot worse than me but I'll take all the hugs I can get. Yes I'll be thankful for grade 1...I just hope the hemmoraging during the biopsy doesn't cause it to be more invasive. I guess I'm scared of everything right now.

Oklagirl

My biopsy was a stereotactic biopsy...sitting in a chair and they vacuumed out the tissue Georgia1. Thank you so much for the kind thoughts. It's going to be a journey.....but I'll just have to be strong.

EastcoastTS

Oklagirl:

If you need hugs, you've come to the right place. Count me in for a huge virtual HUG!!!

Take a deep breath and know that you'll make it through this. We all have. Being scared of everything right now is pretty much how I remember feeling, too. That will pass or lessen greatly with more information and a plan in place. I promise.

Ask any and all questions! We're here for you.

P.S. If you're an Oklahoma fan, you have a big game coming up on Jan 1 to think about instead of this crap. (I'm a Clemson girl, so I do, too!)

Oklagirl

very comforting words! And yes I'm an OU fan...BOOMER SOONER! My biopsy was done at Oklahoma University Medical Sciences Center in Oklahoma City. It's odd in that I went to the best in the State of Oklahoma but I have friends encouraging me to get a second opinion. I dont know how to respond to them other than saying no but I dont want to be rude.

EastcoastTS

If you have confidence in your medical team, that's what really matters. And a respected facility. All good.

Oklagirl

I do. Just got back from appt. Sending me to OU for surgery and Sentinel lymph node biopsy.

CENOK2017

HI Oklagirl,

Boy, do I Have empathy for yo. I live in Eufaula, 2800 population, We just moved here a year ago.

I had a mammogram in McAlester, only to be called back for a diagnostic compressed mammogram on my right breast and an ultrasound on my left.

Called back again for a stereotactic biopsy in McAlester, OK on December 14. A few days later, which seemed like a month, I was called in to be told I did have cancer, that they thought they caught it early and was probably DCIS. However, they were sending out more tissue to be sure it was not invasive. They were very nice and seemed compassionate....call if I had any questions, etc. They stated next biopsy would be in today.

I had not heard from the Women's Imaging Center by noon so I called the supervisor. She said she didn't know if it had come in yet and got on her computer. She said oh yes, it is in.

ER negative
PR negative
HER2 positive. 3+

I asked her if that meant it was invasive and she said she wasn't a doctor and didn't know. I understood this so asked her to have the radiologist call me and explain. She said ok. She also asked me if I wanted her to FAX the results to my PCP. She also asked me if I wanted to schedule with the general surgeon in McAlester. I said no. I will explain why later.

Supervisor called back and said the radiologist said he wasn't going to call me because he was not an oncologist radiologist.

That ticked me off because he was so compassionate face to face but didn't have the professionalism to call me back himself. He had told us several times he was there to answer any questions. Even if he would have called me and told me himself that he didn't feel comfortable talking to me because he wasn't an oncologist radiologist I would have had more respect for him.

So, then I called my PCP and asked her to call me after receiving the pathology report. She called after reading it, and couldn't tell me a lot, but at least she said she didn't really know how to interpret the pathology reports. She also FAXED a referral to the OU Breast Institute and was going to ask for the first available appointment. She called back later and said she FAXED report but institute was CLOSED until Tuesday. She advised I call them Tuesday to set up an appt since she is not open until Wednesday. And then to call her with appt date.

Even before this diagnosis, it was always my feeling to go to the best place possible for serious problems. After my experience today, where no one could answer my questions, I was sure I wanted to go to a bigger facility. OU Breast Institute seems like a great choice. My PCP agreed. I have also always heard a teaching hospital is the place to go.

So, the waiting continues. I have read the HER2 positive is more aggressive than some breast cancers so am assuming that means it is invasive. I pray it has not metastasized.

How do you like OU so far? Are you going to OU Breast Institute or Stephenson Cancer Center? Please let me know how you are doing

IslandWoman

I am also in the waiting stage and have to say it sucks! I'm getting much better at waiting and trying not to worry. I live on an island with very limited access to radiology centers. I discovered a large lump just after Thanksgiving and am scheduled for a core needle biopsy guided by ultrasound on January 3rd. Ultrasound results were bi rad 4.

Reading these forums has put me at ease; makes me feel less like I'm on an island by myself. Only people going through this can truly understand.

Here's to 2018 and enjoying life!

farmerlucy

Welcome IslandWoman. Yep BC certainly made me feel like I was in the middle of the ocean all by myself. Glad you found us. Crossing my fingers and toes that your lump is B9. If not, we’ll be here for you.

CENOK2017

oklagirl

When you went for your appt at OU, did you meet with a breast surgeon or medical oncologist? I have an appt Tuesday at OU with Dr. Squires, who is a breast surgeon, but now I am wondering if I should be meering with MO. I do not have a definite diagnosis yet. Just a stereotactic biopsy.

I am very nervous and really don't know what questions to even ask. Any ideas? I might start a new topic asking for questions for surgeon.

Hope you are coping well...

Oklagirl

Wow...sometimes it' just not easy which we are both finding out. I live in Durant. I went to the breast institute for stereoscopic biopsy first. I do have an appt scheduled with Dr. Squires on Jan 9th. Is yours tomorrow?