Worried about microinvasion

Rhiant, congrats on having your surgery behind you!

Have you seen a radiation oncologist and a medical oncologist? These are typically the experts who deal with radiation and following you going forward, respectively. You will want to consult with them to see what if anything they can offer to you, and what the benefits/side-effects might be of whatever they're offering.

Often, no radiation is suggested since you had a mastectomy. But you should hear what an expert has to say, given your particular circumstances.

I don't know that tamoxifen would be suggested, but you won't know that until you talk with a medical oncologist.

Both of these experts will generally give you much more information about why (or why not) you might choose to have additional treatments.

HTH,

LisaAlissa

That's pretty much the same thing that I had .... essentially your cancer was caught almost right as it turned to invasive, most likely long before it could cause further problems. Had you not caught it when you did, there would be reason to worry, but as is, you caught it early enough that it really doesn’t affect your prognosis much (you go from something like 99% survival to 98%).

I had radiation because I had a lumpectomy - with a mastectomy it would not have been necessary.

The Tamoxifen is because mine was ER/PR+ but is really mostly to prevent new cancers as the chance of recurrence is quite low, and the chance of mets even lower. With an ER/PR- cancer it is unlikely to be offered.

I get that it is scary to hear “invasion" even a tiny one - I've been there. I can tell you that as time passes, it will get much less scary. (((HUGS)))

It is my understanding that with mastectomy, a sentinel node biopsy is always done as there will be no opportunity to do one after the mastectomy. For instance, if the mastectomy should reveal any invasive cancer, the node biopsy would be needed and the tissue to lead them to the node would already be gone. I would ask your BS about this.

There is no reason to do a biopsy of the sentinel nodes, as it was non-invasive. It is only inside of the ducts. I am not arguing with you, but that is kind of extreme to cut them both off, I would do some reading about drains, and lymphedema, and problems that could arise from mastectomy. It's like trying to put a fire out in a bucket, with the ocean. Not to mention, you will lose all sensation there. I am sorry you found yourself here. I have stage lllc, grade three very aggressive, with many many huge nodes, several bigger than an inch, 25 nodes positive, with disease bursting out of the nodes, lymphovascular invasion and all, and I am still here, bugging everyone...

While mastectomy may not be medically indicated, if a mastectomy is elected, the surgical disruption of the lymph channels means sentinel node biopsy ("SNB") is not usually possible after the fact, as it relies on intact channels and lymph flow to work properly.

On the prophylactic side, one might choose to forego SNB I guess, based on a reduced likelihood of there being anything there. Have you had an MRI and is there very good comfort of no disease on the prophylactic side? If not, please inquire about MRI. In this regard, the NCCN guidelines for Breast Cancer Risk Reduction (Professional Version 2.2015) state:

"Some patients may be at risk for an occult primary tumor, such as patients with abnormal imaging findings on either mammogram or breast MRI who do not undergo biopsy, and patients with familial history who have not had a breast MRI prior to surgery. In such patients, a sentinel lymph node biopsy may be performed to stage the axilla for an occult cancer during the RRM [risk reducing mastectomy], and a secondary axillary lymph node dissection could be avoided if an occult invasive cancer is discovered."

On the disease side, I would think SNB would usually be recommended in the case of mastectomy for DCIS. I had a bilateral mastectomy in Sept 2013 for extensive bilateral DCIS, and both surgeons I consulted recommended SNB with mastectomy for DCIS. I had the surgery at Mass General in Boston.

The NCCN guidelines for Breast Cancer (Professional Version 1.2016) indicate (emphasis added by me):

"However, a small proportion of patients with apparent pure DCIS will be found to have invasive cancer at the time of their definitive surgical procedure. Therefore, the performance of a sentinel lymph node procedure should be strongly considered if the patient with apparent pure DCIS is to be treated with mastectomy or with excision in an anatomic location compromising the performance of a future sentinel lymph node procedure."

Is your surgeon a breast surgeon whose practice focuses on breast surgery, with extensive experience with mastectomy and SNB? Also, does the hospital do many SNBs? Expertise is required. Do not hesitate to inquire about their experience. In this regard, the NCCN guidelines state:

"An experienced SLN [sentinel lymph node biopsy] team is mandatory for the use of SLN mapping and excision."

I recommend you inquire with your current surgeon what current consensus guidelines provide re SNB with mastectomy for DCIS. If the recommendation you recieved is not consistent with guidelines, ask why the recommendation is different in your case.

Also ask what procedure would be recommended if SNB were NOT done, yet invasive disease was actually found (as in my case). Would you then have to undergo the more extensive axillary dissection to remove many nodes for staging purposes? That procedure has a much greater morbidity and risk of lymphedema, so some patients may chose to have the SNB up front.

Lastly, if you have doubts about what is being recommended, please consider obtaining a second opinion at another institution, preferably at a center of excellence with a comprehensive breast center. They can review all imaging, the pathology slides (sent overnight), and your surgical options. They may recommend further testing (e.g., MRI). Even though it is scary, with DCIS you have time to obtain another opinion.

BarredOwl

How large is the area of microcalcifications noted on the original mammogram? Did you have an MRI?

I second the voices above, mastectomy is a huge surgery. You could have a lumpectomy first and try for clean margins? Some women have done that, or even 3 tries, then move to a MX if necessary. I had a large lesion in a A+ size breast so for me a MX or a LX with clean margins was pretty close to the same thing and I wanted to try to avoid radiation and maximize my cosmetic result. But no invasive cancer was found (thank you universe!) and the SNB has caused me issues in the form of cording...

These are very difficult decisions and the time leading up to the surgery is the hardest. You are doing the right thing asking all the questions!