Have You Experienced DCIS?

Extensive dcis in left breast- had double Mx on 11/15.

DCIS, ground 0, grade 3. Lumpectomy with reconstruction. Complication, lost nipple & ended up with a hole that got infected and had to be admitted to hospital for antibiotics. Went back to surgeon they scraped out the dead tissue inside the breast and stitched it up. Was out of left first as neither surgeon felt there was any possibility. It was a success. I am waiting to get another ultrasound to make sure what’s going on inside now that I am seen up.

Has both dcis and invasive ductal left breast 2019. Had lumpectomy and radiation.

What kind of feedback are you looking for? I have dcis that slipped out into my breast as invasive. Stage 1b. No lymph node involvement. I’ve had one surgery to remove the tumor and one lymph node for dissection. The recovery process was relatively smooth. My nerves in my armpit and shoulder burned for about 3 weeks due to removing the lymph node but that’s better now. I go back for a second surgery soon to clear one of the margins. Then it’s port placement and chemo. I’ll have Taxol weekly for 12 weeks and Herceptin every 3 weeks for a year. I’ll also have an echo of my heart every 3 months to make sure I’m doing well on the Herceptin. I’ll also have radiation therapy but I get to choose whether it’s directed or whole breast. So 5 days or 20 days of radiation. I am expecting to lose my hair but it’ll grow back. I have cold packs for my hands and feet to stave off neuropathy. And then I’ll have endocrine therapy for 2 years. I hope that helps.

@heatherc. How does it slip out & become invasive?

@Mechelle W Sorry. I used a local turn of phrase. It grew out of the duct but remains mostly in the duct except for one little area. It’s still classified as dcis and as invasive because it grew a tendril out into surrounding breast tissue. Mine was only found in a mammogram. It was non palpable.

I may need help. I am on STD for 5 months. I am depressed bc I have no purpose after 50 yrs of work. mBC is a major life changer

I know I am whining. Just want advice on support groups if available

SHARE Cancer has a DCIS support group.

@Debra B is there anything you like doing? Baking, gardening, art? Is there anything you wanted to do but haven’t had the time or opportunity to do so like learning to play a musical instrument or write a book or knit/crochet? This is where you get to shift your purpose.

Thank you for reaching out to connect with others who have been through a DCIS diagnosis. This community has many members who understand the unique experience of navigating ductal carcinoma in situ, and sharing experiences can be incredibly valuable for everyone involved. Many people find it helpful to hear from others about their treatment journeys, recovery experiences, and how they managed the emotional aspects of their diagnosis.