I have been DX with DCIS grade 1 what happens next?

Hello @medicgirl26 I am glad you are here. Unfortunately you have not been given the information you needed. Hopefully you will have a sit down appointment with an oncologist when all the pathology testing is done, and you will get more information and get to ask questions.
You may have a larger incision because of tumor type, or even location.
Since they didn’t take nodes right then, it may have been considered an excision biopsy. This would mean they are testing that tissue for oncotype and grade of cancer, looking for information to guide treatment.
I find it helpful to write down all my questions as they come to me, then I can make sense of them and ask the doctor at my appointment. If possible maybe take someone with you to that appointment, as there will probably be a lot of information coming at you.
I also come from a family where cancer is very prevalent. If this were me, I would be requesting genetic testing and counseling. They found that I had more than one hit of genetic anomaly and it came from both parents. This was not information available when I was originally diagnosed, genetic knowledge has been moving forward at lightning speed.
Please feel free to jump into any discussion on connect and ask questions, there is an amazing group of breast cancer members at the ready to welcome you into the discussions.
Do you have an appointment scheduled for follow up yet?

Thank you for this information. I have a brother that has cancer as well. None of the other 5 siblings nor my parents have/had cancer.
Does the genetic testing help with the correct treatment plan? I have looked at several of the questions on the forums non of them answered the questions I had because they were not the same diagnosis as mine.
My follow up is tomorrow. I meet with the surgeon. I am so confused because her nurse gave me a possible treatment over the phone, yet I have seen other people say that they had an oncologist set the treatment plan.
I was just hoping to be able to go into this appointment with some questions I needed to ask. I feel like I didn't ask enough questions prior to the lumpectomy and this is why I was so alarmed afterwards.

I am sorry I misunderstood your abbreviation. I thought SIL was siblings. That being said, yes, genetic testing on the tumor will help guide treatment.
There are many pages with DCIS members, but no one will have exactly your cancer, even though they might have the same treatment plan. If you go to the breast cancer page of discussions and type DCIS into the search bar it should bring up a ton of discussions.
I feel like the nurse, if she is at the surgeons office is kind of jumping the gun by giving you treatment options. If your surgeon doesn’t refer you to an oncologist, I believe you could ask for that referral. In my humble opinion only a cancer doctor should create cancer treatment plans. I personally have had surgical oncologists, and radiation oncologists, and medical oncologists, in my case I found that I preferred it when my medical oncologist led the team.
I would ask every question you have and if some of those get deferred to medical oncology, that just gives you more chances for even more questions.
You got this, please let me know how that goes.

Thank you, I needed someone else to tell me what my brain was telling me. That the general surgeon should not be deciding my treatment plan. after doing some research I also have found that unless it is an invasive DCIS that the lymph nodes are not normally removed. That radiation and hormone therapy normally treat and can irradicate the cancer. I defiantly feel like I need to be referred onto oncology.
I will go back and look for the discussions
I will keep you posted.

I had DCIS stage I in 2003. They couldn’t get clear margins so another surgery resulted in mastectomy. They did sentinel nodes (3) that were negative. They wanted me to take tamoxifen as I was premenopausal (48years old). I declined it. I am (now retired) RN so I want through my pathology report several times. I looked up the words I didn’t know then went back through the report until I was confident of the specific aspects of my cancer. Now at age 70 invasive DCIS in my mastectomy breast but under 1 centimeter. You don’t mention your age. The most common breast cancer is Estrogen +, progesterone +, HER 2 negative. Understanding the effects of hormone blockers is critical. There are multiple chats on this site that discuss the hormone blockers. At the hospital where I am going the surgeon runs the care though medical oncology will prescribe hormone blockers. Diminishing estrogen will affect your bones. They may want to add a medication to build your bones. Again understanding the medications is critical to your decision making. My dentist told me if I went on the bone build meds to get all dental work done 1st as those medicines stay in bones for 10 years or more. I am 70 and have decided to do radiation. I advocated for myself to get a plastic surgeon involved to take my saline implant out prior to radiation. My case is complicated. It is free to go on ChatGPT. You can sign in with your google or Apple password. It will time out after about 10 questions but you can go back in after timeout. You can ask for questions you should ask your MD as well. It has been very helpful, very easy to use. So sorry you are going through this. Hug!

I’m sorry that you were not given or told what you need to…
1. Keep a journal. I kept one with a short daily- how am I feeling etc-, the exercises I did. Write down questions before you go into your appointment.
2. Your oncologist team should make the plan based on pathology report.

I was 60 when I had my cancer DCIS grade 1 but 4 cm and small .7 mm IDC. Left breast. I had lumpectomy and reconstruction on both breast. They removed 3 lymph nodes and biopsied them also. Lymph nodes were negative. Er+ 99% her-

I had 15 days radiation with a booster and then hormone blocking drugs. Before you do a hormone blocker drug. Usually anastrozole- they should do a bone scan . I personally would also do blood work.

I did genetic testing because my paternal grandmother had breast cancer when she was 40yrs. Was also negative.

This is a great sight. Breast cancer. Org. Is a good one. I
Live in a very rural area and drove 3 hrs for treatment in Houston

Genetic testing is for genes that we pass along (or inherited ). Genomic testing is when they test your specific cancer and it is from tissue from your tumor. The pathologist that did your original testing at hospital sends it for genomic testing. Genomic testing does need to be ordered by one of your MDs.

I Had DCIS Stge 0. Since my maternal Grandmother had BC in both breasts, I asked my surgeon for options, recurrence and outcomes. 1) lumpectomy with radiation or 2) mastectomy. She said outcomes were the same. However, lumpectomy w/ rad was a 13-15% recurrence rate. Mastectomy was 2% or less recurrence. At 59, I felt it was a no brainer for me. I opted for a mastectomy. I didn't want to gamble with a recurrence to try to save my breast. Its useful years were over. And also, didn't want to add radiation to the mix if I didn't have to. They found a nodule on my lung and couldnt' tell if it was malignant or not with doing a resection (benign). but I wasn't willing to risk more radiation near my lung. They found cancer cells in 1 lymph node. She took out another 3 or 4 and they were clean. My report came back "risk of micro invasion". When she walked into the other exam room on my first post op visit, she said I had made the right decision. She said I had the highest nuclear grade of cancer. I felt good about the decision I made, but we all have to make the decision that's right for us. I'm 10 years cancer free. I wish you well and pray you'll be cancer free and recover completely. Do your own research and make your own decisions. And if you can't get answers and time from your dr, get a new dr.

Take a deep breath and relax ,write all your questions down and if your going to a good hospital they will answers all your questions no one cancer is the same I had a left breast mastectomy and now I'm on anastrozole and come August I will have reconstruction of both my boobs I'm going smaller and I just happy to be alive that C word will try to destroy your peace, send hugs and prayers to you.

Hey @medicgirl26 I have been thinking about you. I have been wondering, how did your appointment go? Did you get the information you needed, and how about that oncology appointment?