DCIS - Preparing for first surgery consult tomorrow

CMCMom

Hi, everyone

I was diagnosed with DCIS on Monday afternoon, 1-4-16. On Tuesday, I picked up my pathology report which says: "High-nuclear grade DCIS involves almost all cores, with the longest involvement approximately 8 mm in a single core. There is extension into lobules. Immunostains for p63 were performed on all blocks and show intact myoepithelial cell layers surrounding all involved areas." The report says that I'm negative for ER/PR. I have my first consult with the breast surgeon tomorrow. For the last couple of days, I've been giving myself a crash course in DCIS so that I'm prepared with as many questions as possible and so that I'm prepared to make some decisions. This board has been a huge help in that regard. Thank you!!!! I'm hoping the folks on this board might be able to point me in the right direction on a couple of issues about which I haven't found much information.

Based on what I have researched so far, I do not feel that a mastectomy is the right approach for me. I also want to try and avoid radiation. Since I'm negative for ER/PR, I'm assuming I am not a candidate for tamoxifen and other hormone therapies which might have been used as a substitute for radiation. That alone is a negative associated with testing negative for ER/PR. However, I am not finding much of recent vintage (did find an older discussion - 2006 - on this board) that talks about other issues associated with negative ER/PR. Has anyone read anything recently about that? Also, has anyone used Oncotype Dx to assist them in making the decision on whether to proceed with radiation after DCIS removal?

Also, I tried to interpret the findings in my pathology report by running a number of the terms through Google. For a lot of them, I had no trouble finding information; however, I cannot figure out what "involves almost all cores" means. I am heartened that the longest involvement found is only 8 mm (and that the cell layers are intact - Yay!!), but based on the extension into lobules and "all cores" (I have no idea what they mean by a "core"), I am concerned about the size of the DCIS involvement. I am very small breasted, particularly on the right side - barely an A. Has anyone had similar findings in terms of the description "in all cores" and "extension into lobules" who also has small breasts? Has anyone ever heard of someone being required to have a mastectomy instead of a lumpectomy because the amount of DCIS and small breast size made a lumpectomy impossible?

Thanks in advance for any thoughts or feedback.

Best,

CMCMom

hopeful23

CMCMom,

I'm sorry I won't be able to help much, but I am sure others will be very helpful. I just wanted to share that I recently had a lumpectomy for DCIS grade 2-3 followed by hypofractionated radiation (15 treatments plus 4 boosts - 19 total) completed about a month ago. I asked my surgeon about the Oncotype testing for DCIS and she said with a higher grade DCIS she would not recommend not having radiation no matter the Oncotype testing results. My impression was twofold. One, she didn't have the confidence in a newer test, and two, the risks of radiation are very small compared to its benefit. I was concerned about radiation, but it was really quite uneventful and I had much confidence in the radiation oncologist. Best wishes to you!

CMCMom

Thank you, hopeful 23. Actually, that is helpful. I don't want to do radiation, but I have a feeling my choices are going to be limited. It is always good to see that someone else has done well with it. Getting ready for tomorrow...nervous!!! Thanks again for responding.

DeeRatz

CMC-when they do the biopsy the tissue samples they remove are called core biopsies. These are processed in Formalin, put into parrafin wax blocks. They are then cut very thinly, put on slides and stained. So they may have taken more than one biopsy from your lump.

You do not qualify for Oncotype DX texting. You have to be ER+, PR+, Her2-.

I too had small breasts when is was DX(A cup)My BS said that a lumpectomy would essentially be a MX by the time he took enough tissue to have clear margins. I opted for the BMX with immediate reconstruction.

CAMommy

your pathology may change after your surgery. I was 95%/95% after my biopsy and after my lumpectomy it was 75% Estrogen 0% progesterone. My DCIS was also significantly bigger than expected. There was no way I was getting out of rads after that. I chose lumpectomy because there is no demonstrated increase in survivability over a mastectomy. I had enough breast tissue to handle the large amount he took out. Someone with smaller breasts would have needed a mastectomy.

Also, having cancerization of the lobules (when the DCIS backs up into the lobules which is different than LCIS) puts you at a higher risk of recurrence. I had that as well, which also made rads make sense to me.

BarredOwl

HI CMCMom:

Imaging and the biopsy results are both considered in surgical strategy. Try not to worry too much until you learn how your surgeon interprets all of the available information. Whether a mastectomy is indicated is very case-specific, and may depend not only on the extent in largest dimension (I'm not sure how the different cores relate to each other), but also on the overall geometry. Something with one long dimension that is perfectly round may be harder to accommodate than something that is much longer in one dimension than others.

For example, I have had an excisional biopsy (like a lumpectomy) that removed a long, thin slab of tissue with no discernable impact other than a scar. But another time, when biopsies of different sites with suspicious calcifications in between (like a triangle with one long side) suggested ~5 centimeters of DCIS in a small "B" cup, both surgeons I consulted recommended mastectomy.

I don't agree about your eligibility for the Oncotype test for DCIS. Eligibility requirements for Oncotype DX for invasive disease (hormone-receptor positive, HER2 negative) are not the same as the requirements for OncotypeDX for DCIS. The requirements for the DCIS test are:

http://breast-cancer.oncotypedx.com/en-US/Professi...

• For women with ductal carcinoma in situ treated by local excision [also known as breast conserving therapy or lumpectomy], with or without tamoxifen.

Makes sense if you think about it: The invasive test is about possible added benefit of chemotherapy in patients receiving endocrine therapy (who thus must be hormone-responsive), while the DCIS test is used to assess risk to inform decisions about radiation after lumpectomy (and so does not require any special hormone receptor status or HER2 status).

At this point, considering formal eligibility only, you are theoretically eligible for the Oncotype DX test for DCIS. However, the DCIS test is typically done after surgery after a diagnosis of pure DCIS is confirmed.

As CAMommy notes, the surgical pathology may change things, for example, if a small area of invasion is found, the DCIS test would not be used. Possibly other findings from the surgical pathology, such as extent, grade, or margins, would independently indicate radiation, so the DCIS test would be moot. Occasionally, if clean margins cannot be achieved, after repeat re-excision(s), a patient proceeds to mastectomy, in which case the DCIS test would not be used.

I posted at length on the Oncotype test for DCIS recently:

https://community.breastcancer.org/forum/109/topic...

Good luck!

BarredOwl

CMCMom

Thanks so much for all of your responses. I cannot tell you how helpful all of the information on this board has been to me. It isn't just the help with decision making, but also the loneliness. It's so early that I haven't told anyone other than my mom and my husband and that has been very isolating. Visiting this board has really helped with that. I know I'm not alone. Wishing you all the best.

coffeelatte

CMCMom, hoping your surgery consult went well. I found it helped me to hear what the breast surgeon recommended and to know I had a plan in motion. You are in in tough spot right now - in shock, scared, isolated. Then on top of all that stress you are now required to make some very important decisions regarding your health. I hope you feel better after your meeting. This has been a lot thrown at you in five days. It gets much better from here.

CMCMom

Hi, everyone

Thanks, coffeelatte, for your e-mail. The first 5 days was difficult, but I definitely feel a lot better after putting together a plan with my breast surgeon. I felt really comfortable with her. Also, based on my biopsy, she felt confident she would be able to remove the area with just a lumpectomy. That said, she warned me that if she was unable to get clear margins and had to do additional surgery, another lumpectomy would probably not be feasible. I will cross that bridge IF I come to it. I also decided to participate in a clinical trial designed to follow and identify rate of recurrence (DCIS and invasive cancer) among DCIS patients using the Oncotype Dx in decision making. The first step in the trial is an MRI to confirm the original diagnosis and to confirm that there aren't any areas of concern in my left breast. Then, assuming the results of the MRI are consistent with my original mammogram and biopsy, I will have a lumpectomy on the 21st. Assuming she is able to get clean margins, that sample will be sent for Oncotype Dx testing. I will be able to use those results to assist in decision making for further treatment i.e., radiation. She did warn me that with my family history, age, negative ER/PR, my Oncotype DX score will probably be in the higher range. Again, I will cross that bridge when I come to it. Thanks again to all of you who responded.

Best wishes,

CMCmom

joyefull

I had dcis grade 3. Had lumpectomy Dec 2014 followed by 6 weeks.radiation. Iam not taking meds choose not to . Had 2 mamos all good so far. Stay strong

joyefull

I had radiation it was not so bad at all I had Dcis. Grade 3. Had lumpectomy choose no meds too many side affects for me. I have mamo every six months have one left and if still clear I'm good. Total clear 2 years. Good luck and stay positive and strong

BarredOwl

Hi CMCMom:

It sounds like you had a very productive session with your surgeon. Good luck for congruent findings on MRI, and for pure DCIS with nice fat, clean margins.. Keep us posted.

Best,

BarredOwl