2 Mg, 2 US, Biopsy, MRI, 2nd Look US=NO Answer YET!

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roller-coasterRide4me
roller-coasterRide4me Member Posts: 5
edited August 2020 in Not Diagnosed But Worried

From October 2020 to the Present-STILL NO ANSWERS (so sorry...long post)

Hello...newbie here. I have been on a roller coaster ride since October and still have no answers. Wanna ride with me? Summary of all the bumps below:

Summary of Mammary Concerns:

04/0 6/2019-Blunt trauma to chest with seat belt/airbag. (car accident) 4 fx ribs and dark purple, swollen, "hard as a rock" rt breast. Over time the bruises cleared and the hardness went away except for one lump. In October of 2019, I had a breast exam performed by Dr. Gray who ordered a Mammogram and Ultrasound. (She told me that she did not think the area was of serious concern, so she ordered a Screening Mammogram.) However, when I attempted to schedule this an order was obtained from my PCP for a Diagnostic Mammogram and Ultrasound.

IMPRESSION:

1. Right breast 10:00 4 cm from the nipple 2 cm hypoechoic shadowing region corresponding to that seen mammographically. This may represent sequelae from the patient's recent traumatic event, however, ultrasound guided core biopsy is recommended for definitive tissue diagnosis.

2. Palpable region of concern right 4:00 breast corresponds to a 1.3 cm heterogeneous hypoechoic oblong structure region suggestive of a resolving hematoma. Recommend a 3-4 month follow-up ultrasound to ensure stability. At that time, the other hypoechoic structures in the right breast should also be reassessed likely representing developing oil cysts/complicated cyst.

3. No definite suspicious sonographic findings in the scanned left retroareolar breast. Recommend left routine mammography in one year unless clinical symptoms dictate otherwise.

RECOMMEND: Ultrasound-guided core biopsy right breast 10:00

10/28/2019-Biopsy Report- Granulomatous inflammation and fibrosis. No malignancy seen. BI-RADS Category 3 Probable Benign Finding

04/20/2020-Irregular mass corresponding to a previous benign biopsy site, may be concordant with Granulomatous Mastitis, lobular carcinoma cannot be excluded.

04/29/2020-Breast Surgical Consult: Dr-didn't believe it is Granulomatous Mastitis, didn't believe another biopsy was necessary, said there isn't anything on the Ultrasound of 04/20 that she is "worried about" but suggested an MRI to get a closer look at a "dark" area on the Ultrasound. She said she didn't see that there was "blood flow" in that area, "which is a good thing." (her words)

The MRI was done on 05/14/2020

05/20/2020- Breast Surgeon Dr. called me to discuss the MRI. Now she is saying possibly Granulomatous Mastitis, there might be activity indicating "blood flow". (I have absolutely NO SYMTOMS of Granulomatous Mastitis)

MRI Report: Summary/Impression

There is no axillary or internal mammary lymphadenopathy on either side. There is no skin thickening or tethering and the nipples are not inverted.

IMPRESSION: 3 areas in the right breast with suspicious imaging characteristics. Unfortunately differentiating carcinoma from fat necrosis cannot be made based on MR imaging as their appearances can be indistinguishable.

BI-RADS Category 4 suspicious findings.

She STRONGLY recommends an MRI Guided Biopsy. I told her I needed to think about it. She did not like that answer and I felt "pressed" to schedule it. I told her I was not sure and wanted to think about it. She said she didn't want her staff to waste hours of time to get this all arranged and then I decide I don't want to have it done. She said her staff would call me on Friday the 22nd for my decision. When I asked her what she thought this could be, she said she has no idea. I have not heard from her office again.

I have decided NOT to have another MRI, first of all being in the prone position was very uncomfortable for me (pressure on area of fx ribs) and it was difficult for me to breath. If another biopsy is really necessary, I will agree to an Ultrasound Guided Biopsy.

I requested and was granted a 2nd opinion Breast Surgeon of my choice

*To date: I have not seen any change whatsoever in my right breast. I can palpate several "lumps". One of them the first Breast Surgeon consulted has labeled in the diagram on her written report: Fat Necrosis

*Before I obtained the above report, I had asked Breast Surgeon #1 if the "suspicious areas" could be Fat Necrosis and she said emphatically…"oh, no! Not after all this time. (I looked it up and found that after traumatic injury, sometimes Fat Necrosis can become evident a year or more later.) hmm…why, despite her denial, did she label one of them Fat Necrosis???? I will not return to her!

07/23/2020-Consultation with Breast Surgeon #2. She believes this all could be Fat Necrosis, from the trauma but suggests a 2nd Look Ultrasound to try to pin-point the areas of "suspicion" from the MRI with possibly an Ultrasound Guided Biopsy in the future depending on the results of the Ultrasound. Sounded like a reasonable plan.

08/10/2020-2nd Look Ultrasound done. The radiologist said the Ultrasound was unable to "get close enough" to the 3 suspicious areas seen on the MRI. Her recommendation was to have an MRI-guided Biopsy. Discussed this with the Breast Surgeon on 08/13/2020. I asked her if she believes I have CA, she said "no, but can't prove it." She also recommends the MRI-guided Biopsy, but I am afraid I will not tolerate it. She then suggested that I have another Radiologist that she knows and trusts, do another Ultrasound. If she says "I'm not worried" then we will wait 6 months or so and recheck. I am okay with another Ultrasound with her trusted Radiologist.

Is it me or is all of this a tad ridiculous run around? I really want to know if I have CA or not, but each thing leads to another with nothing really conclusive. I thought way back in October a "No Malignancy Seen" and probable benign finding report should have been the end of the ride.

I wanna get off this roller coaster ride.

Comments

  • wrenn
    wrenn Member Posts: 2,707
    edited August 2020

    It sounds to me like people are trying to help and you are getting in their way. Doesn't sound like you trust the system so I'm not sure what would help.

  • Beesie
    Beesie Member Posts: 12,240
    edited August 2020

    "I really want to know if I have CA or not, but each thing leads to another with nothing really conclusive."

    That's because a biopsy is the only way it can definitively be determined if you have breast cancer or not. You have been going in circles (extending your ride on the roller coaster) rather than agree to the biopsy.

    Once a mass has been found on imaging, unless an ultrasound clearly shows that it is a simple cyst (perfectly round or oval, fully fluid filled), there is no imaging in the world that can tell you that whatever was seen is definitely cancer or definitely not cancer. So every mass that is not a simple cyst will be rated a BIRADs3 or BIRADs4. BIRADs3 means that the risk of cancer, based on the appearance of the imaging, is less than 2%, and one or more 6 month follow-ups is recommended to monitor stability (cancer will not generally remain stable but will grow). BIRADs4 means the risk of cancer is anywhere from 2% to 95%, and a biopsy is recommended.

    It sounds as though 2 Breast Surgeons and 1 Breast Radiologist have recommended an MRI-guided biopsy. It sounds as though you don't want this but would agree to an ultrasound guided biopsy. Here's the thing. Based on the difficulty of the procedure, any surgeon or radiologist will always recommend an ultrasound guided biopsy as a first choice, as stereotactic biopsy (mammogram guided) as a second choice and an MRI guided biopsy as a third choice. But for the biopsy to be effective, it must be done using whichever screening modality best visualizes the area of concern. There is no point doing an ultrasound guided biopsy if the ultrasound doesn't clearly see the area of concern because the needle might not be placed properly and the results might not be accurate. In your case, an MRI guided biopsy is necessary if you want to get an accurate result.

    As wrenn said, it sound as though you have several medical professionals who all are on the same page as to what needs to be done, and you are getting in the way and not letting them do it. Either trust the medical professionals and follow their advice, or stop the whole process and take your chances.




  • roller-coasterRide4me
    roller-coasterRide4me Member Posts: 5
    edited August 2020

    Thank you for your responses. What you are saying then is that the MRI Biopsy is 100% accurate and END OF RIDE??? I would have the MRI Biopsy if I knew I could tolerate it (being in the prone position was very uncomfortable (pressure on area of fx ribs) and it was difficult for me to breathe) not being able to breathe was pretty scary! I mentioned that to the Dr. but she had no suggestion for that.

    But when I asked her, she seemed pretty confident that this is NOT CA

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited August 2020

    Nothing is EVER the 'end of the ride'. We're dealing with human bodies, so nothing is ever 100% accurate. And our bodies change every day.

    Still Beesie & Wrenn are right. Trust your docs and move forward, or put it all out of your mind and go on with your life.

    However if it helps - I always take a Xanax when I have an MRI because yes - it is uncomfortable and I can't lay still long enough to get good images. Talk to your docs about getting a prescription for 3 or 4 Xanax pills. It's the only time I take them, but it makes all the difference.

  • Beesie
    Beesie Member Posts: 12,240
    edited August 2020

    Yes, to MinusTwo's point, unfortunately an "all clear" one day doesn't mean that something else won't turn up the next day. For example in my case, I had BIRADS1 imaging (that's as good as it gets - nothing seen at all), then supplemental imaging (due to my being high risk) a week later that was BIRADs4 and a week after that I was diagnosed via biopsy. So I went from "all clear" to breast cancer in two weeks.

    That said, if you want the closest thing to a definitive answer, you need to have a biopsy. More and different screening won't provide the answer. With the biopsy, there are several possible outcomes:

    1. Benign, which usually is followed by a 6 month screening to ensure stability; this is done to provide reassurance that the right area was biopsied (some masses include parts that are cancer and parts that are not) and everything remains stable, confirming the benign result.
    2. Cancer, which is followed by surgery and the recommended tests and treatments (in whatever order is appropriate for the diagnosis).
    3. High risk (LCIS or ADH or ALH - atypical cells) which is not cancer but sometimes cancer is found mixed in with high risk conditions so as a next step usually an excisional/surgical biopsy is recommended to remove the entire suspicious area or mass for a more complete examination under a microscope; on average the diagnosis is upgraded to cancer in about 20% of cases.
    4. Discordant, which is when the benign biopsy result doesn't match what would be expected from the appearance of the imaging, suggesting that perhaps the wrong area was sampled; the follow-up here is also usually an excisional/surgical biopsy.

    .

    Any of the first three possibilities could happen in your case. The last possibility, discordant, is less likely for you since it's strongly expected that your result will benign; discordant results are more common when the expectation is that cancer will be found yet the biopsy shows normal cells.

    Since the breast surgeon expects that your mass is not cancer, it might be considered a BIRADs 4a, which has a 2% - 10% risk of cancer. While a biopsy is recommended in these cases, if you really don't want an MRI biopsy, you could ask if it could be treated as a BIRADs 3, with short-term follow-up imaging for the next 12 - 24 months. That wouldn't give you any answers at all for now, but with each follow-up that exhibits stability, the odds of it being cancer go down. And if a follow-up screening shows growth or concerning changes, then a biopsy will be necessary. Not the usual or recommended approach (you've had 3 doctors recommend the biopsy) but another option.

    What is certain is that continuing to do what you've been doing, going to more doctors and getting more of the same tests, isn't going to get you anywhere, as you've already seen.


  • roller-coasterRide4me
    roller-coasterRide4me Member Posts: 5
    edited August 2020

    Thanks, Beesie and Minus Two...you have given me A LOT to think about. This is all new to me and not a lot has really been explained. I didn't even really know what questions to ask and "Dr. Google" was not real helpful.

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