Is Genetic Testing for DCIS ever necessary?

The fact that your diagnosis was caught while it was still DCIS doesn't impact whether or not genetic testing might be required. The same considerations should apply for genetic testing, whether your diagnosis is DCIS or invasive. You had breast cancer - it happened to be caught while it was still at the pre-invasive stage.

Having had the BMX, the main reason why you might want to have genetic testing would be to know if you are at risk for other cancers (for example, if you are BRCA positive, that would increase your risk for ovarian cancer) and to notify your family, since they too might carry the same genetic mutations.

Do you have a family history of breast or ovarian or prostate cancer? Those are usually the ones that raise the red flag.

I did have genetic testing because I have breast cancer history on one side of the family, and prostate cancer history on the other side of the family. For me, since I was having a single MX, if I'd tested positive, it might have driven me to have a BMX. And I probably would have removed my ovaries. It also would have meant a lot of discussion with other family members, to ensure that they got tested too. But I tested negative so none of that was necessary.

I also had the test without the counseling. The factors that made me eligible were:

family history of breast and prostate cancer (maternal)

Ashkenazi Jewish ancestry

Diagnosed at 45

It probably depends on your insurance company which they look at but I know I qualified two different ways.

I've never heard of insurance denying genetic testing when there's one or more risk factors (early onset, strong family history, certain ancestry (especially, but not limited to, Ashkenazi Jewish heritage), a family member with a known mutation, etc). I have heard of testing being denied in the absence of those factors, however. Given that your care team did set up or agree to set up an appointment for you, I assume there is some risk factor? Your insurance saying they'll cover the testing but not the meeting with the counselor is odd, though; my insurance (Cigna) wouldn't pay for the testing unless I had a genetics counsel (I did have the option to do it over the phone). I wouldn't be surprised if they overturned that ruling with an appeal, or even that the person you spoke to was mistaken about what your insurance covers. Surely other doctors were involved in your care: can't you contact your oncologist or surgeon's nurse and explain the situation?

I did see a counselor and had a test ordered. In fact, a nurse had already arranged for an appointment to be set up before I even knew I had DCIS (I'd had surgery to remove a painful lump that everyone thought was benign. Well, it was, but the DCIS was an incidental find). But I'm 26, which sent alarm bells ringing, even in the total absence of any family history. Other people may have to prod a bit more to get a test or appointment.

The meeting itself started with the counselor taking a detailed family history. She charted my family tree and asked about any medical conditions (or procedures - she did ask about hysterectomies) I knew that person to have, with an obvious focus on cancers. Then she explained a bit about how most breast cancer is sporadic, how familial breast cancer is not necessarily tied to the BRCA gene mutations, etc. She also was rather emphatic in emphasizing that genetics test may come back with a variable of unknown significance, which is a mutation that no one knows the effect of. It may be harmless, it may be malignant, and if your test comes back with it, you'll not know either way.

I can't say I learned anything new information-wise from the consult, but I did find out that there are genetics assays that look at more than the two BRCA genes. I chose to have a panel done that tests six different genes associated with breast cancer. For that reason, I'm glad I met with the counselor, as I would not have known about that test otherwise, and given my age and lack of family history, it's possible that another gene is faulty, and I'd like to know if, say, I have Li-Fraumeni (I don't know yet. The counselor told me that I wouldn't get the results for at least three weeks, and it's been six. Outside labs can move slowly, just to warn you). Your situation, however, may be different. Maybe there is a strong hx of breast and ovarian cancer in your family, so you just want the BRCA test done. If that's the case, you probably don't need to meet with a counselor. Maybe you don't even want to do a test. But maybe your family hx is a bit goofier than the classic breast cancer family, or you want to know the risks to your children, if you have any. In that case, you might get something out of the consult.

Oh, and I took a peek at the EOB for the consult, and my very expensive hospital only billed 364.75 to my insurance company.

I know that was long-winded, but hopefully it helps! Short answer: definitely go if you suspect something other than BRCA.

My breast surgeon sent me for BRCA1&2 testing, as well as an MRI, before we decided what was to be my treatment plan. It was our first meeting and all he knew was that my routine mammogram at the age of 43 showed some calcifications, which led to a biopsy and a grade 2 DCIS diagnosis. I was surprised at this meeting that he was advocating a mastectomy and was quite clear that I wanted to spare my breast. So in my case, the genetic testing was quite important (as was the MRI) -- the outcome directly determined my surgery, with bilateral mastectomy and ovary removal also under consideration.

I did meet with a counselor as part of the genetics testing who gathered family information and explained the process and met with her again when I receive my results (which thankfully were favorable). I do think that it is important to make the best informed medical decisions before surgery, although the testing and waiting for results is extremely stressful. I had a lumpectomy, and  as it turned out, in my final pathology report, I had a trace amount of grade 2 IDC, but it did not change my treatment plan.