Diagnosed with DCIS: How do I decide on treatment?

It is not my intention to give incorrect information here. I checked my reports and can only tell you my understanding of what my results indicated. My cancer was bilateral, which is uncommon, so that’s already a different category. One breast was DCIS and everywhere, a constellation of cancerous microcalcifations. The other was a micro invasion, IDC. (This was all unexpected because I always had regular screenings.) I had 2 opinions/suppositions prio to the surgery or the pathology and diagnostic tests coming back from the mastectomies and both doctors had already been leaning towards chemo and trying to prepare me. The surgeon that did the mastectomies ordered the Oncotype DX and the pathology report said Ki-67 and FISH to follow. There are other tests that check the same thing as Oncotype, like Mammaprint. She was not optimistic before the results of the Oncotype came in, due to the pathology and it being in both breasts. It came back a early stage, which is important. My Oncotype DX was low so no chemo was recommended. My Ki-67 was 10%. My understanding is that this test determines how quickly the cancer cells replicate. So that low score was another indication that I would not benefit from chemo. I can’t find my results for FISH. Some articles state that Ki-67 is controversial because institutions have different cut off numbers for what “low” means. A “low” number is another indicator of recurrence and survival and the Ki-67 test should not be used alone, but in conjunction with those other tests.
In any case, my invasive cancer was not found in other breast tissue, other than where the tumor was located and they were the same kind of cancer. I had no lymph node involvement. I think everyone involved was surprised but obviously very happy for me.
I did 5 years on anastrozole. At my 5 year check up this summer, my oncologist said he is confident that there will be a reliable blood test soon in order to determine recurrence. For me, that would be amazing because I don’t have anything they can screen. Because my cancer was bilateral among other criteria, I qualified for Genetic Testing to see if I carried the genes for breast cancer. I didn’t, so I was told that it was probably environmental factors. I think they were pretty thorough even though some of the science and correlations are beyond me and fingers crossed that a recurrence is low. I think we all did our best.
Hope for good outcomes!

ki67% is one of the proliferative factors in the Oncotype, according to the company. My ki67% was 20 (low end of high) but Oncotype was 8. Grade 3, LVI. It's so confusing!

With both breasts gone, I also wonder how the heck I can tell there is metastasis. I read about that blood test and am going to ask if that can catch metastasis.

ki67% is one of the proliferative factors in the Oncotype, according to the company. My ki67% was 20 (low end of high) but Oncotype was 8. Grade 3, LVI. It's so confusing!

With both breasts gone, I also wonder how the heck I can tell there is metastasis. I read about that blood test and am going to ask if that can catch metastasis.

As problematic as they can be, there are cases (including two mentioned on Mayo Connect, I believe) where tumor markers were the only sign that something was going wrong. I recall one writer here noting that they saved her life as they led to deeper examination and PET (or MRI) scan that found distant recurrence.

I wish that there were more consistent methodology for monitoring this stuff as relying solely on mammo or ultrasound seems woefully inadequate for identifying distant cancers early.

Hi all.
My surgery is tomorrow 😱 (10/24). My left breast (that my first doctor thought was fine) now has a diagnosis of DCIS and a SAVI implantation took place this past Thursday.

My right breast that was originally diagnosed DCIS now has three areas of concern - 2 are cancerous and one is about to be - so all 3 areas need to be removed thus changing the procedure to a partial mastectomy. Tomorrow I’ll have wires implanted in the right breast to guide the surgeon.

I’m going to talk to the doctor tomorrow about Oncotype DX testing and see what he says.

Needless to say, I’m bummed out but I’m glad I have you guys to talk to. Thanks.

@tctredwell1 Gosh tomorrow so this post may be too late but good luck!

Not to late! It’s not tomorrow yet and thank you for the well wishes - I REALLY appreciate it! Night night.

Hi all.
My surgery is tomorrow 😱 (10/24). My left breast (that my first doctor thought was fine) now has a diagnosis of DCIS and a SAVI implantation took place this past Thursday.

My right breast that was originally diagnosed DCIS now has three areas of concern - 2 are cancerous and one is about to be - so all 3 areas need to be removed thus changing the procedure to a partial mastectomy. Tomorrow I’ll have wires implanted in the right breast to guide the surgeon.

I’m going to talk to the doctor tomorrow about Oncotype DX testing and see what he says.

Needless to say, I’m bummed out but I’m glad I have you guys to talk to. Thanks.

Had you been tested for the BraCA gene?
Good luck with your surgery, I hope you have an easy recovery.