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Mammo and Ultrasound With Birads 4

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I haven't been here for sometime as I am 13 years out. I go for my mammos each year and personally I hate the place and do not trust them. I should have switched, but felt once a year I could deal with it. The issue is they did a biopsy in 2011 where I was dxed. Then after treatment they were biopsy happy. I had two bad experiences with them and then actually refused 3 other biopsies and later found out these were nothing burgers. So, here I am with a Birads 4 with a group of doctors I do not know or trust much. My gyn wouldn't write an order for an MRI even though I am high risk. I just wanted to know if what they see is scar tissue versus a tumor. I would do a biopsy after an MRI, but I have read an MRI can keep people from unnecessary biopsies.

So gyn wouldn't write it so I went back to my rads doctor for an opinion and he wouldn't write it either. This is really ticking me off since this is an non-invasive test to give me some peace of mind. Heck, I even tried to find a place that would do it nearby and I would pay out of pocket, but haven't been successful. I have another appointment with my old breast surgeon next week, but I am sort of running out of time. The radiology place wanted to poke me in two separate places, put in clips and said I should even get rid of whatever they find (cancer or not) and wanted me to schedule for a few days after they saw something. I declined and make an appointment for a month out, but I am very frustrated. Has anyone went though this and was it resolved somehow? Thanks and sad to be back.

Comments

  • moderators
    moderators Posts: 8,287
    edited July 9
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    @rockym we're so sorry to hear what you're going through. We understand your preference to get an MRI and not a biopsy (or 2).
    Did they explain why they want to skip over the MRI and go directly to biopsying? We're guessing that since you've had breast cancer (or are we misunderstanding the "13 years out"?), and since a biopsy is the only definitive way to determine if the lump is cancer, they feel most comfortable with this diagnostic approach.
    We understand you don't trust the center that does the mammograms, but do you like and trust your breast surgeon? If so, perhaps you could have a conversation with your surgeon about your concerns?

    We're so sorry for all you're going through, We're all here for you!

    Warmly, Your Mods

  • rockym
    rockym Member Posts: 365
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    Thanks for the reply. I am 13 years out from my dx in 2011. The radiologist didn't give me an option, but after a bit of research (med journals, etc.) I have read that an MRI can be a great non-invasive way to determine if you really need a biopsy. I haven't seen my surgeon in about 10 years, but have an appointment with him next week. I did see my old oncologist yesterday (from my treatment years ago) and he wasn't keen on an MRI. He said I'd probably need a biopsy anyway. I'm not thrilled with jumping in when there is something perhaps better. If the MRI says it's a possible tumor then of course I would have the biopsy, but I've read that an MRI can determine scar tissue from tumors and my scar tissue has definitely changed over the years.

    I guess I'm just disappointed since the gyn said they won't order it (they ordered my mammo) and the oncologist said he doesn't think it's needed and now I feel at their mercy when it's my body. If an MRI showed it was tissue and not a tumor, I would sleep easier and be back next year for my regular mammo.

  • rockym
    rockym Member Posts: 365
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    This forum seems so different from years ago. Maybe there are many other forums, but I am still looking for someone else with the experience of an MRI before going for the biopsy. I have looked at other threads, but the information just isn't there. Perhaps this post will find someone.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,072
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    Hi Rockym,

    Your name looks familiar. I was also dx’ed in 2011 but I am stage IV de novo so am here for good! I can’t really address the MRI issue but understand your concern.
    Yes, the forum is very different. BCO underwent a major change in the way this platform functions and appears, a couple of years ago, two? I could be wrong but not too many years back. In doing this, I believe they cleaned up some very old threads and other things that were thought to be unnecessary so yes, some info is no longer here.
    I hope you get things settled to,your satisfaction soon. Take care

  • maggie15
    maggie15 Member Posts: 1,081
    edited July 12
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    Hi @rockym , I have not been in the exact situation as you but I have dealt with a small rural hospital (understandably not so trustworthy) and a large teaching hospital to which I travel 100 miles for non routine care. An MRI might save you from a biopsy but the power of the machine used and the experience of the reading radiologist are important. You might not get any answers from an MRI done by doctors you don’t trust.

    My local ortho ordered an MRI for unexplained hip pain. It did light up but the radiologist (who had previously missed my bc) said it was most likely a bone bruise with possible differentials of bone marrow conversion or, more unlikely, a bone met. The ortho’s opinion was that met was an over read but I followed up with my onc at the big hospital. From the same imaging a bone tumor specialist was able to report the size of the lesion, eliminate multiple possibilities and order a repeat MRI on a more powerful 3T machine (most are 1.5T.) From the second MRI the radiologists were able to narrow down the diagnosis to a met or a benign tumor that looks like one. Since it’s in a location that is dangerous to biopsy and a PET couldn’t aid a diagnosis I’m on MRI surveillance for tumor growth. It is still indeterminate but at least I trust the doctors and their follow up plan.

    When you see your old breast surgeon I would inquire about the MRI before going to biopsy. As my case illustrates it’s important to have non routine imaging interpreted by radiologists with expertise. Whatever happens I hope you end up with a benign result. I now make the trek for my mammograms. In retrospect I had a questionable read, a bad read and a bad decision by my now retired PCP to dismiss a breast abnormality since my mammogram two weeks prior was BIRADS2 (not.) All the best!

  • rockym
    rockym Member Posts: 365
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    It is way different. Heck, I couldn't even figure out how to reply to you. We were together back then and I'm sorry you are still here :-(. This community was a great 13 years ago and helped me to make informed decisions. What I noticed coming back for help is that lots of threads have 3 replies and then they are done. We had so much conversations back then. If I am navigating incorrectly then that's on me, but I was really hoping to open this discussion. I have an appointment with my old surgeon next week and heck, maybe this is all for nothing, but at this point I think an MRI would give me a good baseline being almost 60 and I would hope could tell me the difference between scar tissue and a tumor. Even treatment has changed so here I wait. Sad you are still here, but happy to hear from you.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,072
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    Sorry I am still here? I am glad I am still here. I am stage IV de novo so not being here would mean I was dead 😵.
    Yes, there is far less traffic on this platform than before they changed it. Quite few long time members (remember our fabulous Beesie?) were unhappy because it seemed the design/rollout of the new platform occurred with minimal, if any member input. They claimed it was Beta tested but it was awful and terribly glitch ridden. It was actually so bad that they took the whole site down for a day or two. After the site came back online, it never had quite the same flavor nor active participation.
    Since I have had 13 progression free years at stage IV, with no known reason why, I feel like being here is the way I can give back. I hope you are able to get an MRI because not knowing what something may be can be very stress inducing. Take care

  • rockym
    rockym Member Posts: 365
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    Sorry you're still here in the meaning of this group…not in life of course.😉 I don't recall everyone's status from that many years ago, but I did make some good friends back then. 13 years at stage IV… wow. I'm glad there are new meds now and ways to keep it together. I am sad there isn't long threads of discussion. I recall that is what kept me sane. I'll post back when I figure out what is going on. I probably spent about an extra year on here giving advise/experience and then did my mammos once a year, grew my hair back, watched my kids grow up and moved on.

  • rockym
    rockym Member Posts: 365
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    Thank you for the reply. I had a call from my surgeon's office yesterday, but while they made it sound like an MRI was cool, I didn't get an order or a call back. My appointment is early next week so hopefully I'll know more. Your situation sounds as if they really tossed you back and forth. I'm sorry for that. And yes, sometimes tests are non-routine, but it's not like we spend years asking for a slew of tests. As in your case, this one is important and I think an MRI is less expensive then a biopsy, follow up, etc.