Hoping This Is All Just Overkill

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Lorie1483
Lorie1483 Member Posts: 4
edited February 2021 in Waiting for Test Results

In June of last year I had breast pain - I think from a pulled muscle from working out. But I was sent for my first mammogram at 30 years old. Came back BIRADS 3 which showed "well-circumscribed" (not well-circumcised like I typed into Google lol) 4 mm nodule in my right breast, which was not even the breast that was hurting. I was then sent to a breast surgeon who didn't seem overly concerned. She thought it was probably "fibrocystic" and put me on evening primrose oil. She said I could get an MRI to be sure or just wait 6 months and repeat the mammogram, so that's what I ended up doing. Went for repeat mammogram in December which showed nodule is stable and has not changed and the report even says "no evidence of malignancy." Had my follow-up with breast surgeon this week and she said that she looked at my films and also had her best radiologist look at them too and it has not changed at all and there is no signs of it being cancer. But then she said if it was fibrocystic, the evening primrose should have made it disappear by now, so now I have to get a biopsy and am feeling really scared. But of course I have been googling (which I know you are not supposed to do) and I found a study that said over half of fibroadenomas never respond to evening primrose, so hoping it could still be that. Also 98% of "well-circumscribed" nodules are not cancer. Also the fact that it hasn't grown or changed at all in 6 months, and that the report says "no evidence of malignancy", and the fact that my breast surgeon and her radiologist see no signs of it being cancer. But I just wonder why we are doing the biopsy then? Guess I should have asked, but was too busy freaking out.

Comments

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2021

    Donnie, I agree with you. I've been hanging around here a long time, and I've had fibrocystic breasts all my life - first fibroadenoma at 16, another after that, and more cysts than I can count. I have never heard that evening primrose is guaranteed to make fibrocystic masses disappear - if only it was that simple! I have also never heard of someone being told that they have to get a biopsy after 6 months for a BI-RADS 3 lesion that is not suspicious and has been stable.

    What was the BI-RADS number on your repeat mammogram? And have you been getting ultrasounds in addition to the mammogram? With a BI-RADS 3, an ultrasound should be done before a biopsy.

    Who originally sent you to the breast surgeon 6 months ago? Normally with a non-suspicious BIRADS 3, the radiologist is in charge of the recommended next steps and follow-up and there is no reason to involve a breast surgeon. This is a radiologist's area of expertise. What next step did the radiologist who did the mammogram recommend?


  • Lorie1483
    Lorie1483 Member Posts: 4
    edited March 2021

    Thank you for your reply.

    My repeat mammogram was still BIRADS 3 that I had done in December, and the radiologist said just return in another 6 months, because from what I hear they like to keep tabs on it for 2 years. I did get an ultrasound at the very first mammogram and it said there was no sonographic correlate on the ultrasound. But I did not get an ultrasound this last time.

    It was the doctor I saw at a walk-in clinic I had gone to for the breast pain that sent me to the breast surgeon, after reviewing my first mammogram report. The radiologist has always just said return in 6 months, no suggestion of a breast surgeon or biopsy at all.

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2021

    Hmmm.... I probably shouldn't say this, but my guess is that the breast surgeon is looking for the revenue from the biopsy. If the surgeon agrees that the lesion is stable and that the imaging remains a BI-RADS 3, then by definition no biopsy is necessary. That's what BI-RADS 3 means - short-term imaging follow up, no biopsy required. Usually radiologists and surgeons are reluctant to do biopsies for BI-RADS 3s, but will do them if a patient insists. But sometimes insurance won't pay if it's a BI-RADS 3.

    The evening primrose explanation is, frankly, absurd. There is some evidence that evening primrose might in some cases alleviate fibrocystic pain or reduce the size of cysts but it's definitely hit and miss.

    If you don't want the biopsy or are questioning whether it's necessary, perhaps go back to the radiologist and ask for an ultrasound to see if there still is no correlation with the mammogram, or if something now shows up and either confirms a benign appearance or raises concerns. And you can ask the radiologist if he sees any reason for a biopsy.



  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited February 2021

    I'd also ask the radiologist for a recommendation to a new doctor! The radiologist seems to be the only professional and sensible one.

  • Lorie1483
    Lorie1483 Member Posts: 4
    edited March 2021

    Thank you. Yes, I was just so confused because in one breath she was saying there is no signs of it being cancer, but in the next breath she was saying it needs a biopsy because it hasn't disappeared with the evening primrose (after only 6 months taking it).

    To be honest, this whole experience has been messed up from the beginning because after my first mammogram, the doctor I saw at the walk-in clinic got the report and said there were 2 masses - 1 in each breast. But I read the report myself and it said there was the 1 nodule in the right breast, but the one that was in the left breast was just a normal appearing lymph node which was confirmed by ultrasound. And the radiologist just wanted me to come back in 6 months for repeat mammogram on the right - not even concerned about the left. Anyway, that's how I ended up being sent to the breast surgeon at a place called CARTI which is supposed to be state of the art.

    I guess I might go ahead and do the biopsy, but it is giving me a lot of relief to know that if the radiologist thought it was something, he would have suggested biopsy himself.

  • LivinLife
    LivinLife Member Posts: 1,332
    edited February 2021

    Welcome Donnie! Along the lines of Beesie and Alice - I know some breast surgeons do biopsies though often it is the radiologists recommending biopsies and they are the ones (I would say) more skilled at doing them. You mentioned walk-in clinic so I'm not sure whether or not you have access to a breast care center or if the radiologist you mentioned is more a general radiologist - I can see where that makes a difference too in who does breast biopsies... I've only ever had biopsies by breast radiologists in my local (fairly rural) breast care center - it is not a nationally certified center so that is not what I'm suggesting. You many not have access to a breast care center though.... Just some additional things to think about....

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2021

    Donnie, it sounds as though the doctor at the walk-in clinic was kind of clueless, and that's what's started the ball rolling towards where you are now.

    From having read posts here for so many years, what I've seen is that there are a lot of primary care doctors - generalists - who don't understand breast imaging. They see anything noted on a report and figure that for the sake of caution, the patient should see a breast specialist (i.e. breast surgeon). That sometimes leads the patient down the road towards extra testing and procedures that are unnecessary. I've seen it happen dozens of times. What some PCPs don't understand is that when it comes to imaging, the expert is the radiologist. The radiologist is a doctor who specializes in imaging and biopsy procedures. The breast surgeon is a doctor who specializes in surgery. So when something shows up on breast imaging, the assessment of the radiologist and the follow-up recommendations from the radiologist don't usually need a second opinion from a breast surgeon, a doctor who is less specialized in this area. Unfortunately some PCPs treat the radiologist's report as though it is written by a tech, not a doctor, and feel that confirmation is necessary from a 'real' doctor, i.e. the breast surgeon.

    That's not to say that second opinions aren't valuable in some cases, where there are several options about what to do next or where the assessment could go either way, a BI-RADS 3 (no biopsy) or a BI-RADs 4 (biopsy recommended). While the radiologist is an extensively trained doctor, there is a level of subjectivity in reading imaging. So having another set of eyes (ideally another radiologist) look at the imaging to confirm a BI-RADS 3, or to confirm stability, can be a good idea. But if the BI-RADS 3 is confirmed, then the follow-up action should be consistent with that, not contrary to that. In your case, you had two sets of eyes (or 3 - the original radiologist, the breast surgeon and the breast surgeon's radiologist) all view both your original imaging and your 6 month imaging, and all agree that it you have a stable BI-RADS 3 mass.

    If you go ahead with the biopsy, who will be doing it? The surgeon herself or her radiologist? If it's the surgeon herself, I'd advise against. If you do want the biopsy, I'd suggest you ask for it to be done by her radiologist or go back to the first radiologist. Yes, sometimes surgeons do core needle biopsies and they go well. But I've seen too many cases on this board of surgeons who insist on doing core needle biopsies or patients who choose to go to a surgeon because they wrongly think the surgeon will do a better job, and then the biopsy isn't properly done (the location of the needle has to be extremely precisely placed), the results are discordant (i.e. the biopsy results don't reflect what was seen on the imaging) and in the end the patient is sent to a radiologist for a repeat biopsy. Not saying that would happen in your case but if it were me, I wouldn't take a chance.

    Let us know what you decide and how it goes.

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited February 2021

    Another thing I’m curious about-does the breast surgeon’s office happen to sell nutritional supplements

  • 2019whatayear
    2019whatayear Member Posts: 767
    edited February 2021

    As per usual great feedback from Beesie! Yes it sounds like overkill to me. Which really sucks for you. I second what Alice says, I'd look for a new doctor honestly.

  • Lorie1483
    Lorie1483 Member Posts: 4
    edited March 2021

    The CARTI center where they sent me has a dedicated breast center, which is where I'm being seen.

    Luckily I had my mom with me so she was an extra set of ears during the appointment and confirmed to me that the breast surgeon and her radiologist do not think it is cancer. I was just freaking out as soon as she said she wanted to biopsy it because the evening primrose should have made it go away, and I automatically said yes let's do it and I didn't ask any more questions.

    The only thing they told me about the biopsy is that it will be done there at the breast center. The breast surgeon said she and the radiologist are going to have to study the films to figure out how they are going to get to it because it is so small. They don't know how it needs to be guided - ultrasound, mammogram, or MRI. They are supposed to be calling me to set it up.

    Now that I have had time to calm down, I will definitely be asking some more questions about who will be doing the biopsy, etc. as some have suggested.

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2021

    Okay, that's even more confusing. You've had a mammogram and ultrasound, and the lesion only shows up on a mammogram. So IF a biopsy is to be done, that suggests a stereotactic, i.e. mammogram guided, biopsy. But the surgeon is questioning whether an ultrasound or MRI guided biopsy might be better? That would require first sending you for an ultrasound or MRI to see if the lesion is even visualized, which it previously wasn't on the ultrasound. So more unnecessary tests.

    Honestly, none of this passes the smell test. And it starts with the evening primrose being the sole explanation for the need for the biopsy. BI-RADS 3 masses are monitored for stability for 1 - 2 years precisely because there is no intervention, other than surgical excision, that can make these masses go away. Many shrink naturally on their own over time, and something like evening primrose might be able to speed that process (but it's a very questionable "might") so all anyone can do is wait and monitor. To say that a biopsy is necessary after 6 months of monitoring for a stable 4mm well-circumscribed mass... it doesn't compute.

    I think you should directly ask why the doctor thinks the evening primrose should have made the mass go away, when there is no scientific evidence to suggest that it would.

    Evening primrose oil https://www.komen.org/breast-cancer/survivorship/c...

    Breast cysts

    Human research is lacking for beneficial effects in EPO use for breast cysts. More well-designed studies are needed before a conclusion may be made.


    Breast pain (mastalgia)

    Evening primrose oil (EPO) is licensed for the treatment of mastalgia (breast pain) in the United Kingdom. Conflicting evidence has been reported with EPO in the treatment of breast pain. Additional well-designed studies are needed before a firm conclusion may be made.

  • redhead403
    redhead403 Member Posts: 125
    edited February 2021
  • rollercoaster451
    rollercoaster451 Member Posts: 16
    edited February 2021

    Hi, it may be overkill but why not do the biopsy. It's a little uncomfortable but it will be worth it to know for sure it's not cancer. Are you doing an ultrasound biopsy? It's not that fun but it's not at all as bad as an MRI biopsy. Basically, the radiologist finds the spot, then you feel a tiny sting. The worse part is that it sound like a gunshot but then it's over. The worst part will be waiting for results but once you have them you will feel better. If you do have breast cancer you will want to know asap. It's worth doing! Finding something early makes a huge difference.

  • jhl
    jhl Member Posts: 333
    edited February 2021

    Hi Donnie,

    I'm with Beesie on this one. First, evening primrose has not been shown to do anything for breast masses/pain nor for anything else it is purported to help. So, for a surgeon to suggest its use and to base a clinical decision on it makes me suspect of the surgeon him/herself. In addition, having the surgeon consult with "her radiologist" is suspect as well. I did look up CARTI and it has mixed reviews on actual patient care although it is supposed to have a beautiful facility. My suggestion is to get a second opinion at a different facility - perhaps, at the Rockefeller Cancer Institute at the University of Arkansas Medical Center. If you want to look in detail at herbals & what they are purported to help, look at Memorial Sloan Kettering. They have a whole online section on herbals so you can get educated.

    As far as why not do the biopsy? Well, it is an invasive procedure which could lead you to a false sense of reassurance, particularly when it is not recommended by your radiologist - who normally do biopsies. The radiologist needs to remove enough tissue for the pathologist to look at & run tests on. The procedure can leave scar tissue which could further cloud subsequent breast imaging and it will definitely leave a clip in place to identify the site in the future.

    Best of luck,

    Jane

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited February 2021

    Another reason, for most people it is expensive out of pocket

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