Topic: Two-month wait for callback mammogram

Forum: Not Diagnosed But Worried — For those who are experiencing symptoms or received concerning test results, but haven't been diagnosed with breast cancer.

Posted on: Aug 16, 2022 12:56PM

Posted on: Aug 16, 2022 12:56PM

chandiv2022 wrote:

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.

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Aug 16, 2022 10:14PM chandiv2022 wrote:

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.

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Aug 16, 2022 10:48PM moderators wrote:

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

To send a PM to the Mods: community.breastcancer.org/my/...
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Aug 17, 2022 07:54PM - edited Aug 17, 2022 07:57PM by mavericksmom

I received my surgery date today, 8 weeks away, mid- October. I think everything medical has slowed down since the pandemic began.

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2-
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Sep 21, 2022 01:38PM chandiv2022 wrote:

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.

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Sep 21, 2022 02:25PM maggie15 wrote:

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.

DX 2/15/2021, IDC, Right, 3 cm, stage 2A, ER+/PR+, HER2-
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Sep 21, 2022 03:14PM chandiv2022 wrote:

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.

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Sep 21, 2022 03:20PM alicebastable wrote:

Can you find a different imaging center? The one you are going to sounds like crap.

Ignore treatment info (below) which is a BCO glitch. Do not enter personal information on this site since they grossly mishandled a data breach.
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Sep 21, 2022 04:54PM maggie15 wrote:

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.

DX 2/15/2021, IDC, Right, 3 cm, stage 2A, ER+/PR+, HER2-
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Sep 23, 2022 09:09PM edwards750 wrote:

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

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