Diagnosed with DCIS: How do I decide on treatment?

I’m sure you’re probably feeling a little terrified and overwhelmed by all the tests, scans, and information being literally thrown at you from all directions. My advice like the others have said, sit down, be still and breathe. Then start writing down the questions you have about what’s next, your greatest ally will be learning about your cancer, look up words you don’t understand, familiarize yourself with procedures, what they’re for and how they will help give you the best outcome. I was diagnosed with stage II IDC which had spread to my lymph nodes on the right breast and LCIS in the left breast. I knew during the biopsy that something was very bad just by the change in the doctor and the nurses demeanor. This was back in Aug 2017, at the time I wasn’t able to process everything, I only felt sick and empty. I thank god for my sister, she was my rock. One person on here had a great idea, ask the doctors if they mind if you record the consultations so that you will be able to understand at your, get definitions of words that sound like they’re made up, when you understand what’s going to happen and why you’ll hopefully get to have a say in your treatment plan. This will give you back a feeling of control of your destiny. In Feb2023 I finished all therapies and was officially declared in remission. My heart and prayers are with you, may your surgery, treatment, and recovery be the best outcomes possible for you. Also, this is a very good site to come back for support, information, and wisdom from those who have intimate knowledge of what you’re going through each and every step of the way. Find peace…

Ty that is exactly what I think too. This would never be tolerated by men.
I also was not expecting the pain to be so acute. I took screamed and jumped off the table. Then burst into tears
It definitely should be done with an anesthetic.
I complained through a follow up survey and a representative called me. I told her it was barbaric to give such a painful shot to a sensitive area. It started the day off terribly.

It was shocking but fortunately very short lived… and it allowed my breast surgeon to trace the path to two positive sentinel nodes. An additional 5 nodes ( next in line) were negative. It was reassuring to hear that.

Before these tracers were possible radical surgery of nodal environment was done. This very painful but also very quick experience has the potential to save us unnecessary harm.

So, we brace ourselves and do it ! Breast Cancer treatment is not for the faint of heart .

Best to all of us on this unwanted journey. 🌸

Update - October 8, 2023
Yes, I did choose radiation (20 sessions) after being told the odds of recurrence were so much lower with radiation. And this week I had my first mammo screening and the result was “no malignancy indicated”. So far so good.

I have DCIS stage 0 and am having lumpectimy Wednesday. How long should I expect to recover and have any of you decided not to do radiation or hormone therapy?

Good morning,
I have just been diagnosed with Extensive Low Grade DCIS with a small Invasive component after a biopsy (echo and mammography done). The ultrasound scan of abdomen and pelvis is clear as well as my chest X-ray. What would be the treatment? Would you recommend a mastectomy or lumpectomy? My surgeon is recommending a mastectomy of the breast and removal of the lympth node.

My lumpectomy (DCISstage0) was several years ago. As i recall, the recovery was uneventful. I opted for radiation because I wanted the additional reassurance that there would not be a recurrence. I did not follow up with hormone therapy or medication of any kind.

If you do decide to have radiation and if the lumpectomy is on the underside of your breast, be sure to get a ComfortSling to protect your skin from radiation burns. It helped me immeasurably. My skin turned slightly pink by the end of radiation, but I had no burns, no broken skin, no pain.

Good luck with all!

Thank you so much!!

I have been diagnosed with DCIS with HERS2 positive. The doctor suggested me partial lumpectomy. Since the lesion size is big, should I go for a complete mastectomy or a partial one? I have heard stories that if I go with the partial, chances are it may come back.

I have the exact situation as you.
My surgery oncologist wants to take my entire breast.
I can not wrap my head around the fact my mammograms were fine for 20 years then boom now they want to take my breast.
I owe it to myself to get a second opinion from a medical oncologist.
I am very interested in clinical trials.