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Topic: So confused?

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Dec 3, 2012 10:06AM

tightrope wrote:

I don't know what topic to be in!!

Recently I was diagnosed with DCIS with possible micro-invasion. The first tumor they found is 4cms, attached to my chest wall in my left breast (I have another 4cm tumor laying right under that one that so far looks benign). that is the one that they found right away. There is another tumor they found on my MRI on my right breast now that looks abnormal and they are sending me for another biopsy this week on it. That one is 1.2 cms. All my lab reports say they believe that I have invasion into my axillary nodes on my left armpit. They tell me that they can't stage anything until I have surgery. I have asked about the lymph nodes multiple times and it seems like my Doctors just ignore that?? The other day they recommened that I have a bilateral mastecomy with immediate reconstruction. But if I have invasion....I can't have that, right?? I can't imagine WHY they would even consider trying to get a person's hopes up if there is no way it can happen or at least looks like there is a chance it won't?? Oh and the invasion appears to be high grade comedo type?? I am so confused. Can someone help me understand this? I have been dealing with this for 2 months now and still going to biopsies, I was diagnosed on the 27th of September. They have cancelled 7 appointments on me. Promised me one Doctor...the second visit he wasn't there and they slipped some moron in on me. I have no insurance so I am forced to go through the county. I feel like I am banging my head on a wall.

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Dec 3, 2012 10:19AM tightrope wrote:

oh yeah and its e/r and p/r neg. It feels like a rock in my breast...on both sides....but especially the left side. I also get rib pain that is terrible!!

“Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it.”-Bill Cosby

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Dec 3, 2012 11:17AM, edited Dec 3, 2012 11:17AM by itsjustme10

I'm sorry you were just diagnosed, and have to go through this.  I'm sure someone witlh more information will be along to help you more.  I believe, from reading other posts, and NOT because I am a doctor, so I aplogize if I'm forwarding incorrect information, but "axillary" nodes ARE your lymph nodes, but it's identified that way to indicate the location.  So they are answering you when you ask whether your lymph nodes are involved- they think it is in your nodes - in those that they mentioned...but that's just from screening tests, and they won't know for total sure until they do surgery and remove them and check them.

It'll be easier once you get all the diagnostics behind you, and a treatment & surgical plan in place. 

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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

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Dec 3, 2012 12:50PM 5Under40 wrote:

I have been searching through the internet for women who need assistance.  My best friend was in her 20's when she was diagnosed with breast cancer and there was no help for her.. no guidance because she was so young.. Her and 4 other women under the age of 40 started 5Under40 Foundation to focus on helping young women fight cancer.  TO HELP! and it has been such a movement ever since.  Please check out their website, 5under40.org

They are 5 stars.. 5 angels.. determined to help!

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Dec 3, 2012 05:58PM tightrope wrote:

thank you it'sjustme10! Smile

Beesie: yes the paperwork for the biopsy says "multiple foci of ductal carcinoma in situ including high grade comedo type microcalcifications are present". they further added "although no definate invasion can be seen, there are foci of infammatory cells present and microinvasion cannot be ruled out"

They mentioned that my lymphnodes looked to be calcified when I was in there. My armpit is hard as a rock anymore...they swell....but also the glands at my neck swells so badly that you can see them when I turn my head sideways. Undecided  (this is what started my search for a doctor as I have had thyroid cancer before all this and was scared it was related to that.)

I have had two other reports saying the axillary nodes do not look good as well. The last being this from my MRI "There are multiple abnormal appearing low-lying left axillary as well as left axillary lymph nodes." they had noticed part of them on my mammagram too. 

As far as the BMX...I am good with it. My Aunt died in her early 40's from breast cancer (I got my dx the day before I turned 40). I don't know if its genetic or not but if it can lessen my chances of a hard fight down the road...then I am good with it. :)

thank you for explaining all of this for me. 

“Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it.”-Bill Cosby