IDCIS

Audj21

I was recently diagnosed with invasive ducal carcinoma after having a breast reduction. I have been to two great breast surgeons and a great surgical team to get opinions. My next stop is to an oncologist. The doctors feel that essentially a lumpectomy was already done in the breast reduction surgery even though we didn't know cancer was there. No one can tell me if the cancer can or already has spread because it was only found by pathology in "cell" form. I have been given the option to be vigilant in my future checkups or have a complete mastectomy as a preventative measure. I do have history of breast cancer in my family. It seems like there are no options in between and I am so confused. If anyone out there has been through a similar situation please let me know how you did. My BRCA test was negative and I have had an MRI. Nothing showed up but like I said, nothing would have shown up for years to come because it was in the cells, not a lump yet. How do I know if the cancer is still growing???

BarredOwl

Hi Audj21:

Sorry to hear about your recent diagnosis, which must have been a terrible surprise.

I think people will need some more information or clarification before they can figure out if their situation is similar to yours.

For example, I am a little confused by the reference to "IDCIS" in the title of your post, reference to "cell" form, and comment that "nothing would have shown up for years to come because it was in the cells, not a lump yet", in light of being diagnosed with "invasive ductal carcinoma" after a breast reduction and posting in the IDC forum. This is because I am not aware of a condition designated "IDCIS" as explained below.

In Stage 0 breast cancer, the aberrant cells are fully confined to the ducts ("non-invasive"), and this condition is referred to as "ductal carcinoma in situ" ("DCIS"). It can take years for DCIS to become detectable by mammogram, and possibly further evolve to invasive cancer and escape from the ducts. Did you mean "in the ducts" instead of "in the cells"?

In contrast, invasive ductal carcinoma ("IDC") has broken through the wall of the duct and is therefore "invasive".

Sometimes, both DCIS and IDC are both present, in which case, treatment is based on the presence of the IDC component.

It is important to understand exactly what was found for your decision-making. If you have not already done so, it would be a good idea for you to obtain a copy of the pathology report regarding the tissue removed during the reduction, so you can see exactly what the findings are, and know what you are dealing with.

The pathology report will also help you to frame some additional questions for your doctors, which may help you with your decision. For example, what is the size of the DCIS (if that is what was found), what is the size of the IDC (if that was found), has a grade been assigned (Grade 1, 2, 3), and were any further tests performed on the tissue (e.g., hormone receptor status (ER, PR), HER2 status, etc.). If this information is not available, could it still be obtained from the tissue samples? Maybe if there was only a tiny bit of disease (only a few cells), there was not enough tissue for such tests? This type of information affects the risk of recurrence, so it would be helpful for your to have it, if possible.

I see your BRCA tests were negative. Did you consult with a genetic counselor about the level of risk based on your own diagnosis and family history?

How old are you?

Last, but not least, one of your options was "complete mastectomy as a preventive measure". Are they recommending a unilateral mastectomy only in the affected breast, or a prophylactic bilateral mastectomy?

Hope that is clear. We look forward to your reply.

BarredOwl

Audj21

Invasive ductal carcinoma in situ. That was the diagnosis. I'm sorry that wasn't clear. I have gone over the pathology report a dozen times and have gone over it with the doctor. The cancer was detected after tissue samples from my reduction went to pathology. The margins around the cancer cells were only clear for .7 mm so we are unsure if all the cancer was removed. I believe they are testing all the samples now. I am 49 by the way. You mentioned some other valid questions that I will make sure to bring up. Hope this helps

Thanks.

BarredOwl

Hi Audj21:

Thanks Audj21.

As I noted above, in the US, "ductal carcinoma in situ" is considered "non-invasive". BC.org lists the various types of ductal carcinoma here:

http://www.breastcancer.org/symptoms/types

"Invasive Ductal Carcinoma In Situ" is not listed, because ductal carcinoma in situ (DCIS) is a non-invasive condition. When invasive disease is also present, the diagnosis technically is no longer pure DCIS. Depending on the size of the invasion(s), it could be "DCIS with micro-invasion" (DCIS-MI) or Invasive Ductal Carcinoma.

Perhaps the Moderators or others could comment on this.

In the meantime, please see this thread where others, including the Moderators, have recently explained this:

https://community.breastcancer.org/forum/68/topic/...

May I ask if you are in the US, and does your pathology report actually contain the words "Invasive ductal carcinoma in situ" (with no "non-" in front of it)?

BarredOwl

Audj21

hi BarredOwl,

Yes I am in the US. And it is Definitely invasive ductal carcinoma. The cancer was already outside the ductal wall.

SpecialK

Sounds like a combination of both DCIS (a non-invasive cancer contained in the duct) and IDC (an invasive component outside the duct), which is very common, but not classified as IDCIS.

BarredOwl

Hi Audj21:

Please forgive me in advance if I am stating things you already know, but here are some of my further thoughts as just another patient/layperson.

I understand that having essentially already had a lumpectomy during the reduction, you and your team have been considering additional surgical options, and the margins being less than a millimeter may be a factor in those discussions.

Also, if invasive disease has been found, a sentinel node biopsy ("SNB") would usually be recommended. SNB requires intact lymph channels, so with mastectomy, it is done concurrently with the mastectomy procedure.

Some surgical possibilities for invasive ductal carcinoma (after a lumpectomy) include:

(a) Re-excision with SNB, with or without radiation; or

(b) Mastectomy with SNB (in certain cases followed by radiation);

With regard to sentinel node biopsy ("SNB" or "SLN" biopsy), the National Comprehensive Cancer Network ("NCCN") breast cancer treatment guidelines (Version 3_2015) state:

"An experienced SLN team is mandatory for the use of SLN mapping and excision."

Generally, a breast surgeon who specializes in the treatment of patients with breast cancer (as essentially 100% of their practice) would be the best choice and most likely to have a lot of experience with sentinel node biopsy (versus a general surgeon who does some breast surgeries or a plastic surgeon). (Edited to add: I believe that a breast surgeon specializing in the treatment of patients with breast cancer would also be preferred for re-excision or mastectomy.)

BC.org has a page with some considerations about lumpectomy (and re-excision) versus mastectomy:

http://www.breastcancer.org/treatment/surgery/mast...

I note you are seeing an oncologist also. With invasive disease, a medical oncologist would discuss potential options, such as anti-hormonal therapy (e.g., tamoxifen or an aromatase inhibitor, or other intervention), chemotherapy, and/or targeted therapy (e.g., Herceptin for HER2+ disease, if applicable). Whether or not any of these are indicated will depend on a variety of factors, like stage, including whether there is any lymph node involvement (e.g., determined by SNB), ER/PR status, HER2 status, etc.

If chemotherapy is under consideration, you might also want to inquire about the possibility of an Oncotype DX test, which is sometimes use to aid in decision-making.

If you are not sure about what to do next surgery-wise, you may wish to seek a second opinion from another institution, such as a center of excellence like an NCI-designated cancer center.

Some patients choose to seek a second (or third) opinion about one or more of their pathology, surgical options, and/or post-surgical treatment options.

Here is a link to a recent study of interest illustrating why a person might want to seek a second opinion about their pathology results (click past the ad to get to the article):

http://jama.jamanetwork.com/article.aspx?articleid...

The above JAMA article was summarized by breastcancer.org here:

http://www.breastcancer.org/research-news/study-on...

A more complete review of all imaging (mammograms, ultrasound, and MRI (if any)), all associated written reports, and a fresh review of the actual pathology slides (which are sent overnight to the other institution), plus an independent recommendation regarding your surgical and/or post-surgical options is also possible. This process can sometimes give you more confidence in your decisions and makes you better informed.

If you'd like to learn more about that process, BC.org has a good section about second opinions if you haven't seen it already. There are multiple sections (see menu at left). Apparently, some insurance plans may actually require a second opinion. Also check that the proposed second opinion institution and doctors are in-network.

http://www.breastcancer.org/treatment/second_opini...

BarredOwl