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Dec 3, 2012 12:09pm Beesie wrote:
tightrope, I'm sorry that your medical team isn't providing the answers you need.
First, the nodes. Axillary nodes are the nodes that go from your breast into your underarm area. There is no way to know, just from the imaging, whether you have cancer in the nodes or not. The nodes might appear swollen on the images, but there are lots of reasons why nodes could swell. On the other hand, many women have nodes that appear to be fine on the images but they are still found to have cancer in the nodes. So the only way to know if you have nodal involvement is to take out some nodes and check them under a microscope to see if any cancer cells are present. And until that's done, you can't be staged, because staging changes if there is nodal involvement.
Since there is concern that you might have invasive cancer and/or nodal involvement, at the time of your surgery they will likely do a sentinel node biopsy. That's pretty much standard procedure. An SNB is simply a way of checking the first few nodes within the long string of nodes. If the SNB shows cancer in any nodes, then a decision can be made as to whether or not to do a full axillary node dissection, removing more of the nodes from the underarm area. But if the SNB doesn't show any nodal involvement, then you've had fewer nodes removed (than a full axillary dissection) and that's a good thing since it reduces the risk of lymphedema.
So I don't think your docs are ignoring your lymph nodes; there just is nothing they can do about them until you have the SNB during surgery.
Image - Axillary Lymph Nodes
As for the bilateral mastectomy... is that what you want? If it isn't, then certainly you can wait until your right breast biopsy to make that decision. If the biopsy is benign, then you don't need surgery on your right breast. If it's cancer, then you can decide if a BMX is the right approach. With your first area of cancer being 4cm, I'm guessing that a MX has been recommended for the left breast. You could still opt for a lumpectomy on your right breast, if cancer is found but the size of the area of cancer is small, or you could go for the BMX. Even with invasive cancer, you can still have an BMX with immediate reconstruction - it's quite possible. If you are thinking about implant reconstruction, if it's determined that you need rads (which could be necessary if you have nodal involvement or cancer right at the chest wall), then what's often done is that the tissue expanders are put in at the time of surgery, the expansions are done, and then rads is done prior to the exchange surgery when the tissue expanders are taken out and the implants are put in. I'm not all that well versed on the reconstruction options in these types of scenerios (if rads and/or chemo is required) but if you post on the reconstruction forum, there will be lots of women who can help. Have you talked to a plastic surgeon yet? If you are considering a BMX and reconstruction, you need to have a PS on your team and you should be consulting with the PS in advance. A PS would be able to answer any questions you have about what happens to the reconstruction if you need rads, if you need chemo, etc..
Lastly, your reference to your invasion appearing to be "high grade comedo type" is confusing to me. High grade comedo type usually refers to DCIS. Has the invasion actually been found in a biopsy? If not, then perhaps they are saying that because you have high grade comedo type DCIS, the likelihood of finding an invasion is higher. I had a lot of high grade comedo type DCIS, and sure enough, I also had a tiny 1mm microinvasion of IDC. So having this type of DCIS does increase the risk that some invasive cancer might be found once the whole lesion is removed and examined under a microscope. But having high grade comedo type DCIS does not indicate a certainty that invasive cancer will be found - I think that majority with that type of DCIS still end up with a diagnosis of pure DCIS. So if in fact no invasion has been found yet, it's still possible that you might not have any invasion and that you might have pure DCIS.
I hope some of this is helpful. And I hope that you can find a doctor who you like and who is available to answer your questions and explain what they know at this point, what they suspect, and why they are making these recommendations for moving forward.
Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke