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Topic: Newbie here with Ductal carcinoma in situ

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Dec 27, 2019 08:34PM

striveforhealth wrote:

12/27/19 -

Hello All, Certainly didn't expect to be here this Friday night or any night for that matter. I just received the test result of a stereostactic breast biopsy with clip...my result is Ductal carcinoma in situ, with focal comedonecrosis and associated microcalfcifications, 1 cm length; histologic Grade 2.

7 months ago a diagnostic mamo showed a group of calcifications (first time noticed) then I had a repeat mamo last month with recommendation to see a breast surgeon and have a biopsy as there were more calcifications and they were "of concern". Met with her and had the stereo biopsy last week and just today I read my test result online. I guess I'm pretty dumbfounded that I'm not in the supposed 85% of people who are told it's benign group. I actually leaned on that statistic to get me through the Christmas holiday. I haven't even received the phone call with the news from the referring doctor yet, but my followup appointment with her is Monday. I did a bit of research to discover that this is not an invasive cancer so at least that has to be a good thing in a bad situation....right?

I'm hoping that some of you with experience can share what kind of questions I should ask the breast specialist on Monday. I'm nervous, of course, but I'm trying to keep my cool. I just don't know what information I need in order to make the best decisions for myself. Thanks in advance for your responses.


Dx 12/25/2019, DCIS, Left, 1cm, Stage 0, Grade 2, ER+/PR-
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Dec 27, 2019 09:06PM - edited Dec 27, 2019 09:09PM by Beesie

strive, I'm sorry you've had to join us, but Welcome!

With DCIS, the treatment options are usually lumpectomy + radiation, or mastectomy (MX). It's your choice, unless the surgeon believes that the area of DCIS is too large or widespread for a lumpectomy to be viable. In some low risk (risk of recurrence, that is) cases, patients opt to skip rads after a lumpectomy. And in some cases, if the surgical margins are too narrow after a MX, rads may be given even after a MX.

After that, if the DCIS is ER+ (i.e. the DCIS is driven by estrogen), endocrine therapy, usually Tamoxifen, may be recommended. This is almost always the case after a lumpectomy but is more optional after a MX and usually is not required after a BMX (bilateral mastectomy, i.e.both sides).

Chemo is never required for DCIS.

Because DCIS is non-invasive, it is not necessary to check the lymph nodes, although usually a sentinel node biopsy is done if the patient is having a MX. The reason for that, and a lot more, is explained here:

Topic: A layperson's guide to DCIS.


Hope that helps.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Dec 27, 2019 10:37PM striveforhealth wrote:

Hello Beesie: Thank you kindly for your reply. I will read through that topic you suggested. Perhaps it will help me formulate some questions for my appointment.

Dx 12/25/2019, DCIS, Left, 1cm, Stage 0, Grade 2, ER+/PR-
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Dec 27, 2019 11:08PM Moderators wrote:

Welcome, Strive. We know this is a club no one wants to join, but we're glad to see you here in our community. You've come to the right place for support! The next days and weeks will likely be overwhelming, but having some questions ready to ask at your next appointment can be so helpful. This community is here for you!

The Mods

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Dec 28, 2019 12:11AM Luckynumber47 wrote:

Your life will be a whirlwind for the next couple of months but once treatment is over things go surprisingly right back to near normal. It took me a while to come to terms with the new shadow of fear that entered my life but now after 3 1/2 years we’ve become old friends.

I had a huge long list of questions for my surgeon but she was very thorough and covered pretty much every question I had before I could ask. My appointment lasted 2 hours. It’s always a good idea to take someone along who can take notes. It’s hard to remember all the details that are covered. Don’t be surprised if it takes a month to schedule your surgery. It feels like this should be an emergency but the tumors usually grow very slowly so you have time to make all your decisions and make the best choices for you.

Wishing you the best of luck and sending hugs


My avatar is a Blue Footed Boobie. Cracked me up. Dx 2/15/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 3/16/2016, DCIS, Right, <1cm, Stage 0, Grade 3, 0/1 nodes, ER-/PR- Surgery 4/6/2016 Mastectomy: Left, Right Hormonal Therapy 5/16/2016 Femara (letrozole)
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Dec 29, 2019 07:43AM striveforhealth wrote:

Thank you to the moderators for the welcome. I appreciate having a place where I can come to read and see the support that you all offer. It's jarring news to get when you've been telling yourself that you'll be in the 85% whose biopsy report will say benign. Still wrapping my head around this, but I'll meet with the doc tomorrow so at least that's good...not having to wait too long to get all the scoop. I just fear that I don't know what the 'right' questions are to ask when we meet. I am taking my husband...but, ladies, sorry, he's never been the greatest listener! lol Maybe if I put a notebook in his hand he'll step up. lol

I know that my life isn't threatened with DCIS so I'm feeling like my situation is not dire. I'm luckier than most is what I'm telling myself. That's helping to keep the nerves at bay...somewhat! lol I've been reading about some women deciding against radiation and Tamoxifin after surgery. I would be interested to read any studies where they've been followed after. So I am curious about that and I will certainly ask. I know that everyone's situation is different and there is a lot to take into consideration...and between myself and my doctor I know there will be discussion and choices to make.

Luckynumber your name here makes me smile and gives me perspective. Thank you. :-)

Dx 12/25/2019, DCIS, Left, 1cm, Stage 0, Grade 2, ER+/PR-
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Dec 29, 2019 09:03AM marinochka wrote:

Strive, welcome!

I as of now also diagnosed with DCIS and had a lumpectomy on 12/19. I feel fine but i am waiting for a pathology report after surgery, it takes longer because of holidays. Yes, i was also collecting all questions before i went to the surgeon to sign a consent for a surgery.

I went with my husband and my daughter, and i was asking all questions, but all 3 of us were listening to answers.

Beesie, I have read again how you described all details re DCIS above and checked with my own internal knowledge at this point. It is perfect.

I want to ask(because i am this kind of person "what if...") and i hope that my question is ok on your Strive post here?

Please let me know, Strive, if it is ok, and i will ask my question, it is connected with this "DCIS is ER+ (i.e. the DCIS is driven by estrogen)"

thank you

Dx 11/4/2019, DCIS, Right, Stage 0, Grade 2, ER+/PR- Surgery 12/19/2019
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Dec 31, 2019 09:11AM - edited Dec 31, 2019 09:14AM by OnWeGo

Hi, I am also a newbie here not even sure where to post this. My doctor found a lump during my annual exam in June 2018. I had a lumpectomy and was diagnosed with DCIS rt breast Stage 0 1 cm lump. But it was grade 3 columnar and changing fast. I had 22 doses of external beam radiation in October 2018 and have been taking Tamoxifen. Problem is the nipple on my left breast has begun to itch just since Christmas Day. When incidentally someone gave me CBD oil (non-THC) which I took for 3 days and stopped once I google'd and found it is a metabolic discruptor (which Tamoxifen is). So I stopped immediately. But now my left nipple is itching and when I think back, the only symptom I had the last few years was itchy nipples which stopped luckily after the lumpectomy and radiation. There is no history of breast cancer in my family so I felt like my prognosis is really great. But now that itching is back. Waiting for the oncologist to return my call. Feeling very anxious. I don't normally think about my DCIS but the itching freaks me out. Does anyone else have itching with DCIS? I guess what I'm asking is could 3 days on CBD oil have disrupted the Tamoxifen enough to bring on DCIS in my untreated breast? And can Tamoxifen knock it out? Or should I run screaming for an MRI? So glad to have found this forum. Thank you.

Dx 6/15/18, DCIS, Right, Stage 0, Grade: High, Plus Intraductal Papilloma, ER+/PR-, Surgery: 7/18/18
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Dec 31, 2019 02:31PM Moderators wrote:

OnWeGo, thank you for sharing everything going on. Itching can be caused by many things, including dry skin, insect bites, pain killers and allergic reactions. And certain breast cancer treatments (e.g. hormonal therapy like Tamoxifen) may cause itching.

Naturally you should consult with your oncologist, also about the CBD oil. Here is what we have about medical marijuana, however, we are not sure about when it is contraindicated. Important question for your doctor.


Please keep us posted.

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Dec 31, 2019 03:43PM - edited Dec 31, 2019 03:44PM by marinochka

OnWeGo, yes, i had a nipple itching and i was diagnosed with DCIS on 11/4 and had a surgery on 12/19. I did not have radiation treatment yet. The thing is that now i have itching around my scar...and also sometimes a nipple( I read here a lot that during healing you experience itching, so it does not bother me now).

I will ask a surgeon when i a see him next week. But i did not connect itching with DCIS...but may be it is connected, makes me think now...

Dx 11/4/2019, DCIS, Right, Stage 0, Grade 2, ER+/PR- Surgery 12/19/2019
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Jan 1, 2020 09:45AM striveforhealth wrote:

Hello Ladies. I have an update to my original post here. FYI- I am 66 and post menopausal. I met with the breast surgeon Monday to discuss my breast biopsy results. I went in pretty anxious but the appointment went well as doc did a good job explaining which included a lot of repetition, which I was grateful for. I need to hear things more than one time. I brought my husband and he was going to take notes for me....but doc said she would take the notes so we could just listen and ask questions. She outlined all the details for us along with drawn illustrations for me to understand what I have going on with this DCIS. My Surgical Pathology Report indicated nuclear positive Estrogen Receptor (ER) in 90% of cells. ER Primary Antibody: Leica 6F11 (just realizing that we didn't discuss this antibody so not sure if it's relevent). 4 multi-core samples were taken from left breast at 6:00. DX: ductal carcinoma in situ (DCIS) Stage "0" with focal comedonecrosis and associated microcalcifications, 1 cm in length; histologic grade 2.

Doc recommended the expanded genetics test, RNA. I meet with the genetics counselor tomorrow. It takes 2 weeks to get results of this genetic testing.

Discussed need for appointments with medical oncologist and radiology oncologist. Talked about multiple docs. I asked her who she would want her daughter to choose.

Need to stop my Hormone Replacement Therapy (HRT) I have appointment next week with my endocrinologist who treats me for osteoporosis, osteopenia, hypothyroidism and prescribes my HRT.

Discussed options for treatment but final decision will be made after I receive genetic testing result. We discussed lumpectomy, mastectomy/reconstruction, radiation therapy,and endocrine treatment. She went over latest statistics and percentages for every option version. I went with prepared questions, most of which doc answered during our discussion. Other questions came to my mind and she addressed them all with great patience and caring.

The appointment was an hour long. My impressions were that doc was highly intelligent, provided information in a way we could understand it, gave us the notes she wrote, made a list of what we had to do next. Very important, she was easy to talk to and had a sense of humor (thank you). She also said she is not offended if I choose to get a second opinion as this is my body, my decision and that her staff will make it easy to get records to any doc should I choose second opinion. Her office staff is lovely and efficient as well. I felt comfortable with her as a person and a surgeon. When my husband and I left the office I felt much less anxiety than when I arrived.

So there you have it so far... I have some important decisions to make for my surgery and treatment. All things considered, I'm feeling grateful for my attention to annual mammograms because that meant early stage diagnosis for me and great PR for committing to annual mammograms.

I would appreciate any comments.

Dx 12/25/2019, DCIS, Left, 1cm, Stage 0, Grade 2, ER+/PR-
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Jan 1, 2020 10:18AM marinochka wrote:

Hi, strive

this is comforting that you had such a good appointment with the surgeon and she seems extremely thorough, and it feels like trust her, I would too considering your appointment and details.

May i ask you : is your doctor in CT or NY?

Do you have any BC family history? I am asking because I was not suggested genetic testing. I will ask my surgeon on post op appointment next week.

Dx 11/4/2019, DCIS, Right, Stage 0, Grade 2, ER+/PR- Surgery 12/19/2019
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Jan 1, 2020 02:21PM striveforhealth wrote:

Hello marinochka.

I do not have a family hx of BC, but I do not know the cause of death of both of my grandmother's or other relatives from that generation who all died on the young side. My mother and my first cousin on my mother's side died of cholangiocarcinoma (bile duct). They were both dx'ed end-stage and died at 81 and 49 respectively. We are seeking to identify if I have any cancer markers with the newest gene testing. I am waiting on the results of the RNA before making any choice of treatment.

My breast surgeon is in CT. We have 3 female breast surgeons in the Waterbury, CT area.

Dx 12/25/2019, DCIS, Left, 1cm, Stage 0, Grade 2, ER+/PR-
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Jan 14, 2020 12:25AM ReeaRite wrote:

Strive, read your sig and it's almost the same as mine. Thank you for posting, and everyone else for the responses. So glad to read the posts here, so glad I found this place. I had my annual mammogram December 1, was thrilled I could get it done on Sunday. Multiple visits since then with next visit being the surgical consult. The good news is teeny tiny under a cm DCIS nowhere else got it early. The bad news is birad 6, known biopsy malignant. The not sure news is a few more really teeny tiny spots. I know I am fortunate and I will be fine. Doesn't stop the scared feelings. Worried about how to deal with this at work, but that's a topic for another forum here. Booking family reunion cruise this summer anyway, life is short, I will spend as much of it as I can with people I like. Worried MD recommendation will be MX. Fortunate to have good care team, happy with them all plus have two good MD/RN friends and my husband rallying around. Discovering that several women I know have this, but I don't have emotional fortitude to tell anyone. Yet. Outside is confident get things done but inside is teeny tiny terrified.

Dx 12/26/2019, DCIS, Left, 1cm, Stage 0, Grade 3, ER+
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Jan 14, 2020 03:00PM - edited Jan 14, 2020 03:01PM by striveforhealth

Hello ReeaRite,

I'm sorry about your diagnosis but glad you've found this support and information page. It is frightening when you get news of breast cancer. I'm glad to read that you have a trusted medical care and support system. Are you saying you already had your breast biopsy and it indicated malignancy or the mammogram indicated malignancy? I was unclear.

I've spent a lot of time reading and researching and have found valuable information. Some that was not mentioned to me when I met with the surgeon. I also spoke with several friends with similar DCIS diagnoses that have been through this already. We may have similar diagnoses but our circumstances are different. They each made decisions based on multiple variables. It gave me food for thought which is one of the reasons I decided to do my due diligence with research.

It sounds like you are ahead of me with a plan for yourself. I do like my breast surgeon but have yet to meet with and decide on medical and radiology oncologists. This is where I am in the process so far.

I did genetic counseling and had blood work done for the CancerNext genetic testing 2 1/2 weeks ago. I expect results should be back by the 16th. I met with my endocrinologist last week to discuss my current bone health. I've had osteoporosis for years and was on hormone replacement therapy for some bone support. The HRT was discontinued as my DCIS is fueled by estrogen as indicated in my biopsy report. She feels I need to go on a treatment for my osteoporosis as I've already had some fractures. My doc requested approval from my insurance company for Prolia which they had already denied last year. Hopefully with this new diagnosis it will get approved. She also changed an antidepressant med I was taking because if I go on endocrine therapy mine is contraindicated. If I'm going to go through the side effects of that therapy I want to make sure I get the full benefit of it. I accomplished a great deal with her so that's great. She's proactive and I appreciate that. I have a consultation with a plastic surgeon tomorrow in the event I decide on mastectomy, reconstruction or plastic surgery.

The more time I've had to research and learn, the more I realize that what I decide for treatment is a very important decision. Wishing you all the best in your process.

Dx 12/25/2019, DCIS, Left, 1cm, Stage 0, Grade 2, ER+/PR-
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Jan 16, 2020 12:06AM ReeaRite wrote:

Strive, thank you so much for the reply! I am much calmer now. My journey so far is December 1 regular mammo > Dec 13 diagnostic > Dec 24 biopsy > Dec 26 path report with DX and more places to check > January 2 attempted biopsies of the newly found teeny tiny bits > Jan 22 surgery consult. I have been reading a lot, my next steps are to synthesize the information, figure out what applies to me and prepare for the surgical consult. I appreciate reading of what you learned - gets me thinking of topics to research. Thanks again and take care,

Dx 12/26/2019, DCIS, Left, 1cm, Stage 0, Grade 3, ER+
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Jan 16, 2020 09:10AM - edited Jan 17, 2020 07:49PM by striveforhealth

Hi ReeaRite.

Your breast biopsy pathology report is interesting to me. You received the DCIS Dx , staged, graded and sized. I'm curious reading about your "new places to check" due to "the newly found teeny tiny bits" that were found and written about in your path report that you had to go back to have biopsied. Did those teeny tiny calcifications show up on your diagnostic mammogram along with the first area that was biopsied? Or were they noticed during the biopsy? I will be interested to know what the pathologist and surgeon say about them.

Your grade is 3. Did your path report indicate if you had comedonecrosis. Mine did, but I am graded at 2.

My reading research has consisted mostly of learning more about DCIS and possible treatments for me in my situation. I read about radiation and endocrine treatment since I was ER+. I was concerned about my bones because I already have osteoporosis so I met with my endocrinologist to get her input. I found most of this information on this breastcancer. org site. The forums have been great because most members list in their biography the details of their cancer and treatment. I looked for members with a DCIS that had similar details to mine. Our DCIS is similar. It doesn't mean it's the same and that we will opt for the same treatment because many other variables come into play. I've been cautioned by members here and by the doctors not to compare because we really are all different. I've also been warned about the "forums"!!! lol Frankly, I've found this forum to be very informative and that members are helpful. I'm especially thankful for those members who have moved beyond their diagnosis, surgery and treatment and still come here to support other women. Kudos to those members. <3

Keep us posted ReeaRite and best wishes.

Dx 12/25/2019, DCIS, Left, 1cm, Stage 0, Grade 2, ER+/PR-
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Jan 17, 2020 08:06PM striveforhealth wrote:

Update: My CancerNext-Expanded + RNAinsight genetic testing came back negative for analyses of 67 genes associated with hereditary cancer. No pathogenic mutations, no variants of unknown significance and no gross deletions/duplications. No clinically relevant aberrant RNA transcripts were detected in select analyzed genes. I have a low likelihood of variants in the genes analyzed contributing to my clinical history.

I also met with the plastic surgeon who works with my breast surgeon. I was very comfortable with him. He's experienced (over 80% of his patients have breast cancer). He was patient and answered all my questions in a way that I could understand. I have decided to have a lumpectomy and oncoplastic surgery. I am now awaiting a pre-surgery appointment and a surgery date. Realistically, it looks like my surgery will be in February.

I'm still a little anxious about surgery but feel confident that I have great surgeons I can trust to do the best for me at this point. It's been a long time since I had that mammogram in November so now I feel like some decisions have been made and the process is moving forward.

Dx 12/25/2019, DCIS, Left, 1cm, Stage 0, Grade 2, ER+/PR-
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Jan 21, 2020 12:28AM ReeaRite wrote:

Glad you are have confidence in your care team and the path forward. The low likelihood of variants - does this mean that complications are less likely?

I just realized I hadn't answered your questions. Dec 24 stereo tactic biopsy taken so path report on Dec 26 was sized, graded, with comedo necrosis. They found a couple of teeny tiny spots during the biopsy imaging hence two more biopsy attempts -my understanding is that this was about scoping for the surgery, with which I agree. Tell the surgeon as much as possible in advance, and I would rather have two or three incisions than have to go back soon after. My surgery appointment is Wednesday, so I expect to learn about surgeon's approach towards the teeny tiny bits. The original area seems straightforward - it's marked so take it out with a substantial margin!

Dx 12/26/2019, DCIS, Left, 1cm, Stage 0, Grade 3, ER+
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Jan 21, 2020 10:55AM - edited Jan 25, 2020 02:00PM by striveforhealth

Hi ReeaRite.

Thanks for your reply. As I understand it, the "low likelihood of variants" refers to the fact that my genetic testing did not find any known mutations in the large number of genes tested...67. So with what geneticists now know, there is a very low chance that any of my genes have a naturally occurring difference in it's DNA sequence that would account for a genetic mutation. So the chance that I would have genetic cancers/inherited cancers is quite low. This does not mean I will not acquire other cancers, but the BC I have now is not genetic. I discovered from the genetic counselor that the likelihood of genetic cancer is extremely low. I decided to get genetic testing anyway because there are other cancers in my family and if any of my genes had a mutation it would more than likely have affected my treatment decisions.

What is your understanding of the comedonecrosis mentioned on your path report? Do you know what it means related to your DCIS? My breast surgeon said that DCIS is typically slow growing, but because there is comedonecrosis (dead cells), it may be growing faster. I could have misunderstood what she was telling me. I haven't had the opportunity to get better clarification from her on this so I wonder what your understanding of comedonecrosis is to your DCIS.

There were no additional spots found on my post biopsy mammo. It's interesting that even though nothing else was noticed I still have a fear that something else is brewing that didn't show up. It's also been a while (May, 2019) since my annual mammogram of both breasts so I keep wondering if in the meantime something might show up in the other/unaffected breast. Is this fear? I suppose it is. I expect this fear I have is normal all things considered. I told the plastic surgeon and left message for the breast surgeon that I want her to try to get a generous margin when she does my lumpectomy. I am having oncoplastic surgery as well so I don't want to find out after the fact that the lumpectomy path reports shows unclear margins.

Good luck at your surgery appointment tomorrow. I'm thinking about you.

Updated: Jan 25 - Breast doc ordered a Mammogram for R breast which I'll have next week. My surgery date is scheduled for Feb 26.

Dx 12/25/2019, DCIS, Left, 1cm, Stage 0, Grade 2, ER+/PR-

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