Anyone diagnosed with DCIS breast cancer?

@sue417 - Dear Sue, this must be so very upsetting! There is the lengthy wait, and then you don't have any reports! I am so sorry you are going through such issues! Yes, you should ask each doctor, but also your oncology coordinator, and the hospital records department.
Can you use the Patient Portal?

Sue, I am not familiar with the Health System in Canada. Can you tell me if your oncology coordinator is with you at each appointment? Does she take notes for you? Can she? Does she go over the main points that were addressed during each appointment?

In the US, we have Nurse Navigators; however, their job is to help patients "navigate" (understand and use) the health system (as a whole) through each phase of their care. This is relative to that particular hospital system/medical center.
However, while the Nurse Navigator will help you through the various phases of your care, they don't accompany you to any appointments.

I truly appreciated this service. Initially, I had no idea what to do, who to see, or where to go! It was very calming and absolutely helpful.

Does your oncology coordinator do any of above, aside from coming with you at each medical appointment?

HUGS!

D.

Hi
The co ordinstor does not take notes but she is very good and I can call her anytime with questions

@flowergal - Sorry I am responding only today!

I want to first address the test I talked about (PreludeDX). It is used to forecast reoccurrence with and without Radiation Treatment. You have already had radiation, so it would not be used for decision-making but rather to provide helpful information. It's only done for DCIS patients like you and me, so you do fit the parameters for requesting this test. Knowledge is power!

"DCISionRT is easily ordered by your breast care doctor. An order request can simply be faxed by your doctor’s office to PreludeDx. Our Care Team will take care of locating your original biopsy or surgical specimen and provide results to your doctor within 2-3 days from receipt—no additional biopsy or surgery is required."

In my case, PreludeDX was ordered by my radiation oncologist. But it can be ordered by your surgeon or your medical oncologist. If you have any questions, you can also call the company's Patient Care Team at 888-211-3247.

HUGS!

D.

I just called the 800 number for information on this test. Thank you for posting.

Hi @lulurussell, have you recently been diagnosed with breast cancer? How are you?

I had a DCIS diagnosis July 2022. Surgery for lumpectomy, followed by radiation.

Hi. Getting ready to finish my radiation treatments and am not doing hormone therapy. What should I expect next? I just want to be done after I ring the bell but now have 2 followups in April with oncologist and May with radiological oncologist. Why?

Yes, just looking for support and information on the meds to take after surgery.

Welcome! What type of breast cancer have you been diagnosed with? Has it already been determined that you will need treatment after surgery?

No tests, but doctors recommend the medication which I just went off of Anastozole with very bad side effects. I bit better 4 days after, but the awful panic attack rushes still with me this morning. Feel so alone , never received education to understand if there are other choices.
I agreed to radiation finished after Christmas with one week every day. I loved my Radiologist that explained my early/small lump would only need less treatment, and the newer partial breast area instead of the whole breast.
I would like any input you may have, as it has been hard doing this alone with no support.