Diagnosed with DCIS: How do I decide on treatment?

Has a genetic test been done to see what the odds for a reoccurrence are? For DCIS there is a test called Oconotype DX DCIS that gives you the chance of reoccurrence to help decide if radiation is necessary . I also had a small area of DCIS ER/PR+. I had a lumpectomy on 9/21. The pathology report came back with nothing found, no cancer, no DCIS present. It was all removed during the Sterotactic biopsy I had prior to surgery. After surgery I was still recommended for a mega dose radiation, 5 days a week for 4 weeks since this is “standard” treatment. I question the “standard” part. Back in the day standard treatment was a mastectomy until women & scientific research started to question this & they started doing lumpectomies. I suggest researching your specific situation to help decide what treatments you believe you need or don’t need. They all come with pro’s & con’s.

What is the name of genomic test ?

Definitely the OncoType, I would have to look up the other 2 and I will get back to you. 1 was K—something. Will check.

There are a few Oncotype tests and more in the pipeline. I'm guessing that you're referring to the OncotypeDX?

Just to remind people, that test has specific parameters and many cancers won't be candidates for the OncotypeDX. Ask your oncology teams for any and all gene or genomics tests that apply to the cancer you're dealing with even the ones possibly not covered by insurance. A friend paid for her OncotypeDX because her insurance didn't cover it but thinks it was a bargain as she avoided chemo and radiation as a result. With her oncologist's concurrence.

Hello - I was interested in your story, as I had a lumpectomy 2019 age 73 with nodes evaluated (no involvement in nodes), HER 2 positive. The recommendation to me was Aromatase for 5 yrs minimum; however, I will never forget the Radiation Onco Dr saying “You don’t kill a chicken with a nuclear bomb.” - and I understood this as meaning radiation not recommended. I have not had radiation. Later, as I was struggling with the effects of Aromatase Inhibitors (switched to Exemestane still very difficult side effects) I found in some original documents the phrase “Patient refused radiation”. I felt a gut punch, as I understood the physician to say ‘not necessary’. I’ve been second-guessing ever since and if I’d understood better I would have opted for both radiation & Aromatase regimen - kind of like extra insurance against recurrence.
Just one story, but definitely go for second opinion plus get someone to go over every word of dx, surgery report, and treatment info so you get a complete understanding of that with which you are dealing - as I see so many here have when they detail their own progress. Best of luck!

Oh, that's disturbing and I would be as perplexed and dismayed as you if that happened to me.

My current rule of thumb when talking to doctors is to assume they are toddlers with a short attention span. I tell them what I'm going to tell them. Then I tell them. And before I leave the office, if I have any reason to doubt the quality of the communication, I remind them what I told them. The odds are that at least one of those three recitations was heard.

And I question any statements they make if I have even a tiny doubt that I understood it perfectly. I think people are just so busy now, and multitasking so much, that miscommunication is alarmingly common...

Medical record errors are like viruses. They spread and are hard to fix. It should have read, "patient followed medical advice to decline radiation." You can try to clarify this with any docs you see. In the meantime, maybe seek another opinion so you can feel reassured, even after the fact- or talk to your current doctor. I also sometimes regret not having radiation but there are considerable downsides that we avoided, too.

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!

I agree that errors in medical reports are a nuisance but they can be corrected, albeit with persistence. They get trickier when a doctor's statement conflicts with what the patient actually said though. I like the new practice in medicine where the doctor records her/his report of the appointment while the patient is present and can listen. I like the transparency and ability to catch and correct errors in real time.

There can be a note to amend, but the error is not deleted if itis in the record. Long story but I had to consult a lawyer on this.