Just diagnosed with IDC & DCIS

newusernam3

Hi everyone, I'm so thankful to have found this board. I have several small children, and am young, premenopausal, and have no health problems.

I do have a strong family history of breast cancer.

I started down this path in November (2017) when I had a "routine" MRI due to being high risk, with no expectations of problem. They called me back to have an MRI-guided core needle biopsy, which showed, what they called, the most mild atypia. Nonetheless, they told me surgical biopsy was necessary to remove the area. The surgeon told me that the radiologists I used were excellent, and they rarely had to upgrade the diagnosis. Even after the surgery, she was very positive. 

So, when I received the call that they found cancer, I was shocked. Which is the state in which I remain. 

Here is the information I have so far:

Final Diagnosis: Invasive Ductal Carcinoma; Ductal Carcinoma in situ; Biopsy site Changes

(Question: What are Biopsy site Changes?)

AJCC tumor stage: pT1b

The tumor is small, 6 mm

Histologic grade: II

Nottingham hist. score 6

DCIS: Intermediate grade

Negative margins

Invasive carcinoma margins are at least 1.5 cm from anterior margin

DCIS margin is less than 1 mm margin  (NOTE: this concerns me)

No lymphnodes sampled

I received a follow-up call that the tumor is highly hormone receptive, and HER-2 negative. She said this was good and I could perhaps avoid chemo.

My primary doctor told me that due to my age, he felt it likely they will recommend chemo.

I want to do whatever is necessary to prevent recurrence, and to be healthy. Does anyone have any idea of what I might expect? It is so confusing. I go back on Wednesday (unless I fall victim to the flu that is plaguing my house...) to discuss options, and I want to be well prepared. 

Thank you so much for reading and for any advice!

Georgia1

Hi there and I'm so sorry; that must have been a shock. The small size of the tumor and the fact that the grade is intermediate and not high are good. Different surgeons (and oncologists) have different views about what a "clean margin" is, so that's something you should plan to talk about for sure. If it is highly ER+, that means that Tamoxifen or an AI should be able to greatly reduce the risk of recurrence. But another question you should ask is if they can run an Oncotype DX test on the tumor sample to predict your recurrence risk; that test also provides information on the relative risks and benefits of chemo.

Then I think you have to ask if you need a lymph node biopsy since they didn't do that during your surgery. Maybe they feel sure your lymph nodes are uninvolved just from the MRI, but you should know for sure to make good treatment choices.

Again, I'm so sorry but keep asking questions and we will try to help. I am guessing "biopsy site changes" means they're admitting the results are different than what the biopsy stated, but of course I don't know for sure.

newusernam3

Thank you so much for you reply, Georgia1; it was really helpful. My appointment this week really helped to clarify things. They are doing the Oncotype DX test on the tumor to see if I need chemo. They will also do a sentinel node biopsy either during a repeat lumpectomy (to get cleaner margins on the one site) or during mastectomy. I am now immersed in deciding between lumpectomy and radiation or bi-lateral mastectomy. And, you were correct about starting on Tamoxifen. I haven't yet, but that is the plan. 

Thank you!! 

Falconer

Hi, Sorry you have to join us here, but it is a very helpful site. I had a similar diagnosis though everything was in the cm's not the mm's for me. Still, my Oncotype was low and I did not receive chemo. It's been 18 months since I started on this path and I'm slowly regaining my energy. I am also a mom of three and thankfully my DH has been a great help through this. Best to you.

Paco

hi Falconer. From your screen name and state identification, I'm guessing you're from the southern tier? I live outside of Buffalo. Did you get your treatment at Roswell? My first appointment there is Monday. I hope they're as good as they say.

Didn't mean to hijack the thread. I've also been dx with DCIS, for now, and hopefully that's it. My MRI also said "post biopsy changes" which I took to mean that the site looked different from older mammos, possibly due to the needle leaving a hematoma...?

newusernam3

Hi Falconer, I'm glad that you have had such good support and are regaining energy.

Best of luck with your appointment Monday, kellyoc519