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Two-month wait for callback mammogram

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chandiv2022
chandiv2022 Member Posts: 6
edited September 2022 in Not Diagnosed But Worried

Hi, all:

I am 44 and just had my first screening mammogram. I've been called back for a diagnostic mammogram (BiRADS 0). Neither the radiologist nor the PCP has shared the reasons; I've tried reading the radiology report myself and have gathered that my right breast looks different from my left breast. I've been told that the earliest I can be seen is the end of September. I asked if the long wait means the situation is relatively okay, but I was told there is absolutely no way to state that without more imaging. I've called other radiology centers in the area and they all say they can't help me.

Is it normal to have to wait so long for a follow-up? And am I crazy for being upset by this? I'm normally very level-headed. But it's tough to have the possibility of breast cancer mentioned and then be plunked in an information vacuum for two months -- and THEN be told "there's absolutely no reason for your distress." It feels a bit like gaslighting.

Comments

  • mavericksmom
    mavericksmom Member Posts: 1,234
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    Do you live in the USA? I know countries like Canada do things differently, so I couldn't comment on them.

    If USA, I would be more than annoyed! They did my extra views right after my mammogram in July, but that was at a large local hospital in the suburbs of Philadelphia PA.

    You have every right to be upset! 44 is young! If cancerous you need to know! I am sooo sorry they are putting you on hold!

    I can tell you I was 49 when first diagnosed, and I had my first mammogram in March 0f 2003, had to wait to get more views, then wait for ultrasound, then wait to see breast surgeon, then wait to get biopsy, and didn't have surgery for IDC until mid-July. I was fine. Fortunately, my cancer was slow growing. I honestly thought those days of waiting forever were gone!

    I was just newly diagnosed for a third time in the opposite breast, and I find it hard to wait in between appointments! My wait is nowhere near as long as what you are going through. Is it an insurance issue? If not, I would call every day to see if there are any cancellations!

    Doctors are quick to say, most likely you have nothing to worry about, and maybe they are right, perhaps just dense breasts. The medical community doesn't seem to understand that "most likely nothing to worry about" isn't the answer we need! We all worry regardless of what they say!

    Best of luck! Waiting is the worst!

  • mavericksmom
    mavericksmom Member Posts: 1,234
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    Also, have you called the doctor who gave you the prescription? Maybe he or she can advocate for you!


  • chandiv2022
    chandiv2022 Member Posts: 6
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    Thank you so much for your kind words. I do live in the US and in a large city (Los Angeles); and with all the resources here, it's very surprising to me that they cannot see me sooner. I've been placed on a cancellation list but nothing so far.

    I'm so sorry to hear that you're dealing with breast cancer for a second time, though I'm glad to know it was slow growing. I am of course hopeful that I will be given the all-clear. But one of my main concerns is that the diagnostic mammogram may lead to an ultrasound, which may lead to a biopsy. If I have to wait two months for each of THOSE appointments, that's six months of waiting -- which doesn't strike me as healthy from a physical or mental standpoint.

  • cathy67
    cathy67 Member Posts: 411
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    chandiv2022,

    Did you look at the birads system definition? Birads 0 should not let you worry so much.

    Of course, it does not mean long waiting is okay for patients.


  • quietgirl
    quietgirl Member Posts: 165
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    I will say this, the first time years ago that I got a call back (which turned out to be nothing) my wait was probably four weeks because they would only give me an appointment on the day the radiologist could read the report right away (and this was at an imaging center that was attached to a hospital but obviously it did all sorts of imaging but they reserved Fridays for call backs.

    Second time around they send me to a different location (and tried to tell me that’s what they always do but if they do it’s a change but still the whole point was a radiologist was looking at the pictures right then and there no delay in knowing the next step)

    If you had felt a lump, or they saw something major they might have worked to find you a different spot. In fact they may reserve spots for just that reason (when my radiation oncologist wanted me to have a mammogram after surgery, they found a spot that was reserved for a particular surgeon who didn’t need it that week). I know it is a complete pain in the (pick your body part) because you just want it over and done.

    If you end up needing a biopsy and you feel like it’s a long wait, then nothing can prevent you from looking for another location. Same goes for surgery. I’m hoping that none of that is even on the table. If other radiology centers are saying they can’t help you then it sounds like there is an overall delay but you may want to see if the first doctor who made the referral would refer you somewhere else (because sometimes that is what is needed with the secondary imaging another referral not just you trying to get another appointment

  • meow13
    meow13 Member Posts: 1,363
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    It seems like wait times are getting longer due to staffing problems ongoing covid other problems.


    Sounds like this isn't an urgent concern, but don't let it go too long.

  • mavericksmom
    mavericksmom Member Posts: 1,234
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    Oh Cathy! Most likely it’s due to dense breasts. Did they give you a copy of the mammography report? It is the law, they must tell you the density result, A,B.,C or D with a description. I am older than you by 24 years, so my breast is not dense and easier to read on a mammogram. They probably can’t see your breast tissue as easily.

    Still, they should be able to fit you in. When I was diagnosed in 2018 I was told I would need to wait more than a month until they heard I needed a diagnostic mammogram, suddenly the girl on the phone fit me in within a week! That is why I said you should call the doctor who wrote your script!

    Averages, risk assessment and statistics don’t mean anything to me when it comes to my body, my cancer! I have learned to advocate for myself. All three times I was diagnosed I was told not to worry, chances are high it isn’t cancer. That might be true, but it wasn’t for me! I was blindsided the first two times because I believed the doctors and medical staff. This time is different, I was surprised, especially since I was refused a double mastectomy in 2018, but I wasn’t blindsided.

    If I were you, I would research breast surgeons and the best facility you can go to if it is breast cancer. Yes, most likely you won’t need that information, but take it from me, finding out you have breast cancer and then finding a good surgeon isn’t the way to go. I was assigned surgeons my first two times and neither were a good fit for me, but I was so devastated at the Dx that I just went along with them.

    Honestly if you have breast cancer, and it is a big IF, you won’t have huge waits between things.

    I guess what I want you to know is that if you research breast surgeons, and be open to the possibility of having breast cancer, it won’t make the wait easier, but it will help later on. It is empowering, I have Zero cancer fear this time, but I chose my breast surgeon prior to my mammogram. I knew after that first meeting he as the one I wanted to care for me! It made getting a suspicious mammogram and later getting a positive Dx so much easier to deal with!

    By the way, my mammogram was BIRADS 4 but they did the extra viewsright then and there, no doubt because I am high risk. Your score is a 0 because it is incomplete!

    You will be worried, but don’t let fear of breast cancer consume you. I’m here for support and so are so many others! You will be fine!





  • chandiv2022
    chandiv2022 Member Posts: 6
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    Thanks to all of you for your feedback. I have no idea whether my breast tissue is dense because I don't know how to read the report, and no one called to explain it. I learned that I had a callback from a form letter in a portal system. It just said there was a "finding" that required further imaging. My PCP pushed the referral through quickly, but when I called, the imaging center said two months is the absolute earliest; the other imaging center gave me a timeline of four months. My PCP said he'd try to get the appointment moved up, but honestly, his office is so overwhelmed that I don't have a lot of confidence.

    It's good to hear that when other people received concerning diagnoses (as opposed to an ambiguous non-diagnosis, which is what I have), there was some sense of urgency among the medical staff. In your experience with the system, when do you get elevated to a doctor who will explain what they're seeing, what's happening, etc.? Also, does anyone know what happens at a diagnostic mammogram? Is it basically just a longer/more thorough mammogram? Thanks so much in advance.

  • quietgirl
    quietgirl Member Posts: 165
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    I went back and found my call backs from2016 because I was pretty sure that we might have gotten similar reports. I am not suggesting that you are going to get the same results as me but my first call back on my left breast was labeled as having an asymmetry. The call back picture they didn’t see it at all and concluded that was probably due to a superimposed picture (in other words however I was in the machine my breast flab was layered on top of each other). Just so there is no concern my cancer was in my right breast so it’s not like that first call back later became something Most asymmetries turn out to be nothing but most isn’t all. Hoping that a spot opens up for you. I personally am a very bad at waiting


  • mavericksmom
    mavericksmom Member Posts: 1,234
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    I apologize, but I think (chandiv2022) knew my last post was for you! Oops! Sorry Cathy67, I admit, I mixed up your names! I am glad you responded to Chandiv too!

  • chandiv2022
    chandiv2022 Member Posts: 6
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    Thanks again to everyone here for the information and reassurance. I will post an update once I've had my follow-up (with luck, before the end of September!). In the meantime, all good wishes to everyone.

  • moderators
    moderators Posts: 8,278
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    Hi chandiv2022,

    We are sorry that these concerns brought you to BCO.org, but we are glad that you were able to get some feedback regarding your situation. We know how difficult waiting can be and we hope that you can be alleviated of that stress soon. Please feel free to send us a message or reply to this post if there is any information you are looking for. We are happy to help support and make this waiting period go a little easier for you.

    -The Mods

  • mavericksmom
    mavericksmom Member Posts: 1,234
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    I received my surgery date today, 8 weeks away, mid- October. I think everything medical has slowed down since the pandemic began.

  • chandiv2022
    chandiv2022 Member Posts: 6
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    I finally got in to for a follow-up. No doctor talked to me at any point, even though I was told when scheduling the appointment that a doctor would definitely meet with me and explain what is going on. Instead, after an extremely painful mammogram and extensive ultrasound, I got a letter in my patient portal telling me there is something in my right breast that is "probably" benign (another way of saying "possibly malignant," it would seem to me). For reasons the letter did not explain, they don't want to do a biopsy now; they just want me to have mammograms and ultrasounds every six months.

    I understand this is a better outcome than a diagnosis of breast cancer, but I'm so upset by this whole experience. This was my first mammogram, and I thought it would be relatively straightforward. Instead, I'm looking at baring my breasts to roomfuls of strangers every six months for time immemorial, just so I can be repeatedly told "we're really not able to say one way or another."

    Has anyone been through this? Based on the experience I've had, I'm leaning away from attending any follow-up appointments/any more annual mammograms. These tests haven't confirmed anything; they haven't denied anything; all they've done is wreck my head.

  • maggie15
    maggie15 Member Posts: 1,059
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    chandiv2022, I'm sorry that the radiology report did not explain the findings so that you know exactly what was seen. I would suggest making an appointment with the PCP who ordered the mammogram who should be able to get more information if necessary and explain the results and the rationale for the screening schedule proposed.

    I had a callback for "architectural distortion" two and a half years before I was diagnosed with IDC. I was on the every six months mammogram plan but did not have ultrasounds. I had four clear mammograms until the fifth which was birads 4C. I ended out having a 3 cm tumor removed in the same location where the architectural distortion had been seen. I'm pretty sure something that big did not grow from nothing in six months, but mammograms are not perfect and miss about 12% of tumors. I'm very glad I kept up with the screenings. Even though I was mad that it was not caught until it was stage 2 I am happy it was diagnosed before it was even worse.

    The possibility of breast cancer is scary, but the women on this site will attest to the fact that it is not the end of everything. I hope you keep up with your screenings. In the best case scenario nothing will ever be found, but if something develops it can be treated.

  • chandiv2022
    chandiv2022 Member Posts: 6
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    Thanks, Maggie15, and I'm so sorry to hear about your cancer. I do understand how scary it can be, which is why I went for a mammogram in the first place. But since mammograms and ultrasounds seem unable to determine anything conclusive in my case, I'm wondering why the doctors want to do them over and over and over again. My PCP is completely overwhelmed and assumes I can figure things out on my own from lab reports in a patient portal. When I INSISTED on a phone call after the first, inconclusive mammogram, the implication was that I was overreacting.

    During the endless mammogram yesterday, I repeatedly asked if I could just talk to the radiologist for a few minutes to try to understand what's going on inside my body. I was told that radiologists never talk to patients and that this is my PCP's job. So I'm in a situation where I literally have no medical professional to guide me through this.

  • alicebastable
    alicebastable Member Posts: 1,946
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    Can you find a different imaging center? The one you are going to sounds like crap.

  • maggie15
    maggie15 Member Posts: 1,059
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    Hi chandiv2022, do you have an ob/gyn or women's health provider? They seem to be more in tune with problems that specifically affect women than some PCPs. In my location, too, the radiologists never talk to patients. My former PCP was of the opinion that pap tests and mammograms weren't something he should have to deal with. Thankfully he retired (I tried to switch but was not allowed to by my HMO) and his replacement (a woman) doesn't feel that way, but for a while the NP who did my pap smears took care of the mammograms as well. I hope you can find a provider who will answer your questions.

  • edwards750
    edwards750 Member Posts: 1,568
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    Good grief how can they possibly expect you to accept a letter like that with no explanation why they don’t want to do a biopsy. It’s down right cruel to leave a patient hanging like that for 6 months. Maybe they should walk in our shoes sometimes and play the waiting game. I guarantee you they wouldn’t be satisfied with a response like you got.

    If it were me I would look around for another place to have your mammograms done with medical staff that that actually talks to their patients.

    I had annual mammogram for years at different places partly because of insurance and partly because one of the places I was going to always had a zillion people there waiting for hours to get results. My nerves couldn’t take it so I switched to a women's health center. It was a lot better. I got my results quickly.

    I hope you find a better place.

    Diane