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I have been DX with DCIS grade 1 what happens next?
The lumpectomy was done on 4/29/25. Pathology report shows DCIS grade 1. The phone call to tell me this was that I would likely have to have lymph nodes removed, hormone and another I can not remember the name treatment, but likely no chemo treatments.
What questions do I need to ask for my F/U?
what is the possibility of reoccurrence?
should I a mastectomy instead?
I have tried to do research but there are so many rabbit holes.
I was also alarmed at how big my incision was. 2 SIL had Breast cancer and their was so tiny mine is the length of my index finger, I was so alarmed in the recovery room I do not remember anything I was told.
The other alarming thing after surgery, was I was never told that during the healing stages I would hear fluid moving inside of my breast. When I called the office I was told this happens because of the void and is normal and part of the healing. This would have been good information to hear prior.
Thank you all for any information you can give me, advise
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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?