Not enough breast tissue left to do complete mammogram.

Posted by 411shirley @411shirley, Jan 4 10:58pm

Via regularly scheduled mammogram I was diagnosed with Stage 3 breast cancer. No lump palpable; totally diagnosed from mammogram and MRI. Lumpectomy performed and several lymph nodes removed. On last mammogram they could not get enough breast tissue to accurately read the results of the breast that had been cancerous. Said I just need to wait 4 months to have the MRI version. This doesn't make me feel real safe as the first lump was not detectable. Is just WAITING all I can do?

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@shirley411 I hope someone with this type of experience responds soon. I know posting a question and not getting feedback for a while can feel like you’re in an echo chamber!
If they are saying that from now on you’ll only be seeing once a year MRI, I would think that’s not enough. Especially after grade 3 cancer.
Is this an initial 6 mos mammogram or your first annual mammogram since surgery? Did they do any type of scan immediately after surgery (so they feel it’s clear)? Right after my segmented mastectomy and mastoplexy they did a mammogram (I was appalled they were going to put my freshly sliced and diced breast into a mammogram machine - but they said they’d use light pressure. I’m guessing the scan was to confirm there wasn’t leftover cancer and that the metal tag was still in place).
Did the pathology report from the lumpectomy and lymph nodes give a clue that they might not be as worried about recurrence? No chemo or radiation, right?
They either feel confident an earlier scan is not needed, or they don’t have enough MRI machines to accommodate you sooner. I’d ask for a more clear explanation on the data they’re using to base the decision to wait. They can, and should, address your concern. It’s important to reduce your stress level, and getting clarification on their decision may help!

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Waiting for tests has certainly become the norm in our area. The only exception here seems to be when you are actually in the hospital. Our doctor orders my husbands scan a month or more ahead of when he actually wants them because the wait time is so long. I am currently 5 months past due for a scan and still waiting to even get scheduled.
I have heard this on connect a lot about the waiting for scans, I would definitely call the imaging center, most will have a cancellation list you can get on if it just a long wait time.
@411shirley I know waiting is excruciating when we are already dealing with past or current cancers. I try to make sure I am doing what I can, trying other imaging centers in neighboring areas, and cancellation lists. After I know I am doing what I can do, I just try to breathe and distract myself until something happens. I would also ask my doctor if a 4 month wait would be significant for me, I trust him to tell me the truth.
Do you have any hobbies that you can distract yourself? How have you coped with the waiting involved in cancer care in the past?

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@triciaot

@shirley411 I hope someone with this type of experience responds soon. I know posting a question and not getting feedback for a while can feel like you’re in an echo chamber!
If they are saying that from now on you’ll only be seeing once a year MRI, I would think that’s not enough. Especially after grade 3 cancer.
Is this an initial 6 mos mammogram or your first annual mammogram since surgery? Did they do any type of scan immediately after surgery (so they feel it’s clear)? Right after my segmented mastectomy and mastoplexy they did a mammogram (I was appalled they were going to put my freshly sliced and diced breast into a mammogram machine - but they said they’d use light pressure. I’m guessing the scan was to confirm there wasn’t leftover cancer and that the metal tag was still in place).
Did the pathology report from the lumpectomy and lymph nodes give a clue that they might not be as worried about recurrence? No chemo or radiation, right?
They either feel confident an earlier scan is not needed, or they don’t have enough MRI machines to accommodate you sooner. I’d ask for a more clear explanation on the data they’re using to base the decision to wait. They can, and should, address your concern. It’s important to reduce your stress level, and getting clarification on their decision may help!

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Thank you so much for your response. The reason I've been extra concerned is because I did have surgery, chemotherapy (with dates missed due to unacceptable blood counts), 11 days in the hospital because blood counts were so low, a transfusion, 33 rounds of radiation (all from Oct. 2020 - June 2021), and all scans since then. I still see the oncologist every 3 months. Until this last round of blood testing my tumor markers were in the high range and kept getting higher. Now that I've stopped Verzenio (I still take Anastrozole), the tumor markers are finally in the normal range. At surgery I had 4 lymph nodes removed, one showing macro metastasis. Since the cancer had already moved out of just the breast tissue and was in the nodes, it increases the chance it will metastasize somewhere else since it already escaped into my lymph/blood systems. If I would have known they wouldn't really be able to perform a mammogram I guess I might have decided upon a full mastectomy of that breast and then I wouldn't have to worry about unscannable breast tissue. So, for the right breast, I can only get the MRI versions once per year.

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@411shirley

Thank you so much for your response. The reason I've been extra concerned is because I did have surgery, chemotherapy (with dates missed due to unacceptable blood counts), 11 days in the hospital because blood counts were so low, a transfusion, 33 rounds of radiation (all from Oct. 2020 - June 2021), and all scans since then. I still see the oncologist every 3 months. Until this last round of blood testing my tumor markers were in the high range and kept getting higher. Now that I've stopped Verzenio (I still take Anastrozole), the tumor markers are finally in the normal range. At surgery I had 4 lymph nodes removed, one showing macro metastasis. Since the cancer had already moved out of just the breast tissue and was in the nodes, it increases the chance it will metastasize somewhere else since it already escaped into my lymph/blood systems. If I would have known they wouldn't really be able to perform a mammogram I guess I might have decided upon a full mastectomy of that breast and then I wouldn't have to worry about unscannable breast tissue. So, for the right breast, I can only get the MRI versions once per year.

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I mistakenly thought the reason you were waiting was because of schedules like the rest of the world. This feels even more awful to me. If the mammogram was unsuccessful, my thought would be “why wait?”. You still need some kind of current image, right?
Is this 4 month wait time because the doctor doesn’t think there is a need for a current scan, or because insurance denied it?

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Good questions. I’m trying to see if I can get the MRI type sooner.

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If they won’t approve an MRI more often, I think that I would ask that they do an ultrasound to replace the mammogram. Ultrasounds are not intended to look at an entire breast, I don’t think. But if they review the most recent MRI there might be areas that were small that they weren’t concerned about . . . unless it grew. They could identify from the last MRI where it might be most beneficial to use ultrasound, say in the cancer bed, or if there was another small calcification, or a lymph node that was quirky.

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