No Radiation for High-Grade DCIS -- Anyone?

SPCancer

I had very small DCIS on my right breast (7 mm). It was so small that there was no DCIS to test after the lumpectomy, which I just had last month. Two separate pathologists looking at my biopsy results said the DCIS was grade 3. I am ER/PR positive with no BRCA gene, but with a strong family history of BC (mother and three maternal aunts, one of whom passed away when she was my age now -- 43 -- and another who passed away from blood cancer after being treated with chemo for her BC). We are now performing the Oncotype DX test on my biopsy tissue to determine whether or not I should have radiation. Given that the DCIS is high-grade, I'm young, and I have a strong family history, what weight should be given to the Oncotype DX test in determining whether or not I have radiation? Also and just as important, has anyone with a high grade DCISopted out of radiation? If so, I'd like to hear about your experience.

ksusan

I had grade 3 DCIS with no positive nodes on that side. I did not receive a recommendation for radiation. I did have chemo because of IDC in the other breast, and radiation on the IDC side due to a positive node. I did not get oncotyping.

ORknitter

My good friend & I have almost identical path reports, DCIS, grade 3, comedo necrosis. I opted to do rads & AI, she opted for just a lumpectomy. We are both doing great. My thoughts were based on family history as my sister lost her battle with this, my friend has no family history of BC. In the end you will do what is right for you. Listen to the opinions of your docs, but remember they are just opinions, not orders. I did do the BRCA tests because we have 3 daughters, but had already decided to throw all I can at this before I received those results (which were negative).

Good luck with your journey, this is a wonderful place to ask questions, vent, share and whatever else you may need.

Kroge6

I have high grade dcis. I just had a double mastectomy where one of the margins was not clear. My nodes are clear. The doctor said they have removed all that they can. We are now considering radiation. I hate that the cancer is still in me. Does anyone have any experience with this.

MoniW

Kroge6, I didn't even know that was possible - to have a Bilateral Mastectomy and for there still to be cancer. I thought that would remove all of the breast tissue? I have a Dx of high grade DCIS in only my rt breast, it was very small but I am told it was very aggressive and grew very rapidly. I had the first lumpectomy that did not clear margins, then a re-excision that barely got 1mm. I cannot take Tamoxifen (which would be standard for my age, 43, and the fact that I am pre-menopausal) because I have pre-cancerous growth in my uterus and Adenomyosis. Tamoxifen and the like would greatly increase my risk of developing uterine cancer. Yes, I could do radiation but am choosing not to because I already have implants, and was told by the Rad Onc that radiation will most definitely cause encapsulation (along with all the other damage that comes with Rad.) Not to mention, I'm told the target would compromise my rt lung - causing somewhat diminished lung capacity. Although my genetic testing all came back negative, I also have a strong family history of bc - my mother was diangosed at 43 with what is now called DCIS... less than 6 months after, invasive bc was found - by the time she had a mastectomy and chemo it had metastasized and she passed away two years after initial Dx.

My response to my DCIS is, I'm having a bilateral 'Simple Mastectomy', skipping radiation & Tamoxifen. Praying that nothing else is found once both are removed!

Kroge6

MoniW I think the mastectomy is the best choice for you. Good luck it's not as bad as you think. Ya I wish there was more research on high grade dcis.

april485

Moni, it is absolutely possible to not get it all because there is always some residual breast tissue left behind. They cannot get it all unfortunately. This sometimes leads to someone having to have radiation to make sure to get all of the cells left behind. Best of luck in your upcoming surgery!

sundial

Hi, I am 42, DCIS, high grade, comedo necrosis, 19mm lesion, ER+, PR+ in the left breast. Had a lumpectomy with 5mm clear margins, and I don't want to have radiation because I'm afraid of heart damage years later, and the risk of secondary cancer. I know I'm probably making a mistake. I am afraid and I'm not sure how this will affect my overall survival. I was told there is a 30% chance of recurrence, 50% of the time it's DCIS and 50% it's invasive cancer. Hope things are going well for you SPCancer.

Moderators

Dear sundial, Welcome to the community. We are glad that you reached out here. While you are waiting for others to respond you may want to take a look at this information on our site about Radiation after Lumpectomy for DCIS. Keep us posted. The MOds