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GalleySlave
GalleySlave Member Posts: 19
edited October 2021 in IDC (Invasive Ductal Carcinoma)

Hello new brave friends. I am so impressed with the knowledge and openness on this board. It is a godsend.

So a mammogram precipitated a stereotactic biopsy and an MRI which revealed “minimally invasive & DCIS” plus dense breasts, and probable calcifications. Because the IDC+DCIS area is 6cm, mastectomy is the consensus. But all the unknowns are killing me.

Isn’t there a pre-surgical test to find out if there is node involvement? Can’t they do genomic testing on the biopsy sample instead of waiting for the tissue from surgery? Should I have had an ultrasound? Isn’t there some way to know if I’m going to need chemo? Shouldn’t we find out if it’s metastasized before I commit to surgery?

Seems like I should have more answers before I agree to an invasive procedure like a mastectomy. I know it will likely “save my life,” but what will that life look like? But I guess this is all rhetorical, because that is not how it works. Sigh.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited October 2021

    GalleySlave,

    I will try my best to answer your questions but bear in mind that different doctors and different medical facilities may have slightly different ways of doing things.

    - Node involvement can sometimes be seen on imaging but since it’s possible for it not to show, surgical biopsy of the nodes is needed. Since it is a surgery in itself, it is often done in conjunction with whatever type of surgery you are getting. Most people are happy to avoid two surgeries if they can!

    - I’m going to pass on the use of the biopsy sample for genomic testing. My educated guess is that a biopsy sample is too small but I hope someone chimes in with the answer.

    - Why do you think you should have an ultrasound?

    - All treatment decisions/options are determined by the final pathology report post surgery. Your treatment will also be based on the IDC since that is the invasive component. Is there a chance you might need chemo? Yes, but I think that you need to wait for that post-surgical report so all factors can be considered.

    - Scans are not routine or standard of care for initial diagnosis of lower stage patients. Less than 10%, about 6% actually, patients are diagnosed as metastatic at initial diagnosis. Imaging would be the primary way to detect metastasis but it is hugely expensive and exposes a patient to a lot of unnecessary radiation. So it’s very cost ineffective and who wants more radiation exposure?

    Your feelings mirror what many of us have experienced, worry, worry, wait, wait. In many ways the beginning is the hardest part. You don’t have all the info you need yet to answer all of your questions and concerns. This is an excellent time to learn to take things one day at a time. Take care.

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  • MountainMia
    MountainMia Member Posts: 1,307
    edited October 2021

    Hi GS. Sorry you have found yourself with us. I can take a stab at some of the questions, and others will likely chime in.

    First, as to finding out if it's metastasized prior to surgery, it's a great question. However, doctors don't go looking for mets. If you have particular symptoms that suggest mets as a possible cause, that is when more testing is done.

    Committing to surgery? Please commit. It won't go away on its own. Whether or not you need a mastectomy or lumpectomy is a different issue. Did your surgeon specifically recommend a mastectomy? Did the surgeon give you specific reasons why that is a better choice for you? Depending on the size of your breast, 6cm could be a very large amount, or not very much. My DCIS spread about 3cm, only half yours, but a fairly small portion of my medium-sized breast was removed by lumpectomy. If you aren't comfortable with the information you have, it's a good idea to get a second opinion.

    You have information from the biopsy on hormonal and HER2 status. That's a lot. And I'm guessing your IDC (the invasive part) isn't actually 6cm+ (in your diagnosis tagline), based on what you said "IDC+DCIS area is 6cm". That also tells both the surgeon and medical oncologist a lot. Since your tumor is ER+, you can have Oncotype testing done. The sample needed for that is larger than they would have from the biopsy, so yeah, you probably do need to have surgery before you'll find out whether or not you need chemo.

    Someone else will need to chime in about the lymph node involvement.

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  • GalleySlave
    GalleySlave Member Posts: 19
    edited October 2021

    Thank you, exbrnxgrl. It just feels like I’m missing some part of the puzzle, but maybe it’s just there are so many pieces that I can’t see what the puzzle is going to look like yet. I’ll be patient. It’s not my style, but I’ll give it a try. Thanks again

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

    Adding to the previous posts:

    - Nodal involvement often is found at microscopic levels; this will never be detected by any imaging. A Sentinel Node Biopsy (SNB), surgically removing 1 or several nodes, is the only way to know for sure if there is nodal involvement or not.

    - Staging and treatment is based in part on the final size of the invasive cancer (DCIS needs to be removed but otherwise does not count) and this can only be known after surgery.

    - For an ER+/HER2- cancer, an Oncotype test might be done to determine the aggressiveness of the cancer and the benefit, if any, of chemo. But generally the Oncotype test is recommended only for invasive tumors larger than 5mm. If you have "minimally invasive" cancer, your tumor size might fall below that. Certainly if the biopsy was mostly DCIS, the invasive component of the sample would be too small to test. But even after surgery, an Oncotype test may not be done if invasive tumor is small.

    - The other reason full body scans are not done on early stage patients is because while they are very unlikely to find metastatic cancer (both because it is rare at time of diagnosis in early stage patients and because it can only be found if it is above a certain size - microscopic mets is undetectable), there are often "incidental findings" which lead to more unnecessary tests and even biopsies. I suspect most people have cysts and nodules that we don't know about and are harmless, but if they show up on imaging, they often have to be investigated further.

    Unfortunately once diagnosed, we all go through a nervous waiting game with lots of unanswered questions until the surgical pathology is available.


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