Newly Diagnosed High Grade DCIS in Situ comedo necrosis

threeboys1175

Recently diagnosed with High Grade DCIS in Situ comedo necrosis. I am back and forth between Lumpectomy/Radiation or Mastectomy. I know it is a personal decision I must make for myself, but would like to hear other treatment stories with this early diagnosis. Thank you.

Moderators

Welcome "threeboys1175 to Breastcancer.org. We're sorry you have to be here, but glad you found us! You may want to post a similar post (please not just cut and paste) into DCIS (Ductal Carcinoma In Situ) Topic for responses to help with your difficult decisions. Lx or Mx, flat or recon, a lot to consider options.

Besides sharing your experiences and learning from other members here at the boards, you may also want to take a look at the Breast Cancer 101section from the main site, which is designed to help you sort through all of the information on our site to find what is more relevant to you right now.

Also it relevant to read from our main site reliable information on DCIS — Ductal Carcinoma In Situ, Diagnosis of DCIS where you'll learn about symptoms, diagnosis, treatment, etc.

Possibly of interest is the Oncotype DX Test as that may have bearing upon decision too.

We hope this helps!

The Mods

Ariom

Hello threeboys! so sorry you find yourself here, but glad you found us. I was Dx with grade 3 DCIS too and although the suggestion was for a Lumpectomy with radiation, I decided to have a Umx with a SNB and no reconstruction. I wanted to avoid rads if at all possible, so I took the chance that there would be no invasion which would still indicate rads, even after a Mx. I was very fortunate that there were no surprises in my final pathology. I have never regretted my decision.

This is a huge decision to make, don't be swayed by what others think you should do, it has to be your decision.

iwannabefree50

I also had the same exact diagnosis. Mine looked like it was going to be small. I had the lumpectomy. They could not get clean margins. I had a re excision, still no clean margins. By that point, half of my breast would have been gone so we decided to do the simple mastectomy and reconstruction. The only thing Iwould do differently is I wish I had a bilateral mx. I did not personally like the asymmetry. And now the doc thinks I haven CA in my other breast.

It is only something you can decide. But you wanted our stories. Best regards for whatever you choose!

Piscean

Hi threeboys1175,

I had a similar diagnosis on December 24, 2014. The diagnosis came from a core biopsy sample. I wanted to avoid radiation so I went with the unilateral skin sparing mastectomy with immediate reconstruction (tissue expander). My final histopath report came back with TWO types of cancer: the DCIS 3/3 with comedonecrosis as well as invasive ductal carcinoma, also high grade 3/3.

I'm glad I went with the mastectomy with recon though the tissue expanders are quite uncomfortable.

Annette47

There’s a post towards the top of the DCIS forum that you might find helpful as it addresses this question.

For me, I had high-grade DCIS with comedo necrosis AND a micro-invasion, but it was a very small area. I had no particular risk factors that would increase problems from radiation, and wanted to maintain sensation (reconstructed breasts usually have little if any sensation). I had some swelling from the radiation, but no skin or other problems, and the swelling went down eventually (although it took a while). I do not regret my decision in the least. Now, how I had a larger area of cancer that would have made a lumpectomy more disfiguring it might have made a difference in my decision, but the survival rates for lumpectomy and radiation are if anything better than (or at least equal to) mastectomy.

SuzyQ42

Aloha Threeboys,

I also was diagnosed with high-grade DCIS with comedo necrosis and microcalcifications. Mine was a very large area at 6 cm. I am having a mastectomy with tissue expander on the 28th. I'll have reconstruction in July. My Dr. is concerned that there may be IDC that just didn't get caught in the biopsy, so she's going to take lymph samples too. At this time, there are no plans for chemo or radiation. Of course, this will change if IDC is found. Lumpectomy isn't an option for me because of the size of the are affected.