What We Know and Don't Yet Know About DCIS

Deborah Collyar, President, Patient Advocates In Research, discusses what new research is telling us about DCIS, both here and abroad. What is low risk DCIS? Is it okay to monitor your DCIS? Is Endocrine Therapy absolutely necessary? What does the future look like? Deborah addresses this and so much more.
For more information, go to www.sharecancersupport.org, or call our Helpline at 844.ASK.SHARE (844.275.7427).

[@skytechbits]

The biggest hurdle in influencing ladies to have a mammogram done is the way it is done. It is way past the time to make it much more comfortable by creating it more symmetrically in line with the human body than forcing an object to press against a woman's breast. That is extremely uncomfortable and painful. As a tech, I am sure the technology now exists to change this. That would exponentially increase screenings and bring in more data points that would help millions of women much quicker than waiting years for them.

[@fenlandwildlifeclips]

Just have the mammograms.I'm so glad I did. I have DCIS high grade, extensive.

[@sindeekaye2223]

This was absolutely incredible!!!! Every single question I’ve had regarding DCIS was answered here with precision and clarity! I want to thank you for this very informative session! Two thumbs up! 👍🏼👍🏼

[@Cyndrome11]

I am 67 and was recent diagnosed with DCIS grade 2. I am monitored with yearly mammogram and MRI. Last two MRI’s indicated they are watching two areas in right and left breast and recommend another 6 month follow up. DCIs was found on mammography this June. Biopsied and second pathology opinion was obtained confirming diagnosis. I am waiting to meet with surgeon to discuss my treatment options. A lumpectomy with radiation and tamoxifen was the course of treatment suggested. Over the past 15 yrs. I have had bleeding in both breasts, atypical ductal hyperplasia in right, (found on tissue biopsy). Two addI biopsies with most recent with DCIS grade 2. I lost a sister diagnosed at 45 died at 53 to metastatic breast cancer and another sister diagnosed last year with invasive cancer stage 1. We are all ER+. I am strongly considering a bi-lateral mastectomy. My living sister and I carry a mutation in BRCA 2 that is a variant of uncertain significance. The presentation did not take strong family history into consideration. What would be your consideration based on data in my situation?

[@sheila7814]

I wish they had answered you. I am not a dr…. My sis had cancer and now I do too. I did the DNA test before I got cancer and got results that said I had two mutated genes that they are unsure whether they are connected to cancer. They caught mine early, but I decided to get a dbl mastectomy just to go ahead and remove the abundant breast cells and ducts that could in turn create their own cancers due to the fact they have extra hormone receptors and mine was ER/PR hormone positive . Yes, it is an extreme surgery, but I am glad I did it, but, yes they still have to leave some breast cells to keep skin alive, but most is removed. Gave me more peace of mind. I also had an oncotype dx done and got a score of 15…. So no chemo.

[@purple777royal]

Wow, 2 patient, same prob, different approach. It really takes an unbelievable courage for women to undergo bilateral masectomy especially with DIEP Reconstruction!

[@sheila7814]

@@purple777royal Thank you. I don’t know about courage….. when you have the cancer tumor in you, you just want it out and your mind wants to have as much security as possible…. So we do what we can. Hugs!

[@cynthiakleist9513]

I had this. I got a mastectomy. I suggest this. If it's in check and didn't spread GET RID OF IT. They don't enough about dcis. It's cancer and cancer spreads. Don't give it a chance.

[@donnananar1556]

Wonderful and very encouraging for all of us with DCIS. I really hope that I knew all this information at 5 years ago! Thank you so much girl’s! God bless you all!🙏🏻❤️🙏🏽

[@umaravikrishnan]

Deb it was an amazing presentation and I learned about my DCIS ( low grade) and the treatment options. I have done surgery and radiation. I am discussing with my oncologists whether I need hormone therapy or not. I am post menopausal so AI would be suggested. I got information about the risks of recurrence and it helps me make a decision on AI. Thank you so much for this video.

[@charleysmile6491]

Thank you for the webinar. I have DCIS and had just done with a mastectomy on my right breast with my breast reconstructed. It was quite an overwhelming experience as there aren't any info of alternative treatment available apart from surgery. I consulted 8 specialists and all advised mastectomy so I did it, still thinking I am being overtreated at the time of the surgery. This webinar has helped me to understand much more about my condition and making me feel better as my DCIS is a higher risk one. Thank you once again.

[@MK-ih6wp]

I am a bit surprised that all 8 specialists recommended the same thing. But I am impressed that you did so much research. I am also worried about overtreatment.

[@charleysmile6491]

@@MK-ih6wp I found out after the surgery, when I met yet another oncolgist (for medication advice) that all specialists said the same thing agreeing to the surgery was because of the first 3D mammogram report, which from her point of view, was written a bit too serious!

[@krivoli86]

Could you find peace again and overcome this surely traumatic experience? I‘m about to get surgery and have fear.

[@charleysmile6491]

@krivoli86 Yes, it's been a year since the surgery, and I have overcome the traumatic feelings. It takes some time to adapt and adjust, but for me, it's all fine now. The scar from surgery was tiny, non noticeable, and my surgeon said it would fade away. Wishing you all the best for your upcoming surgery. You will recover very soon!

[@lisbethshibley158]

really informative and thorough! thank you for doing this presentation!

[@joban7851]

Hello, glad to find your video, now subscribed, helps understand more about DCIS, was diagnosed 2020, surgery been delayed because of pandemic Covid & had Covid. Recovering takes a long time with complete vaccines. No history of breast cancer.

[@donniedarko4688]

Very clear and educational presentation!

[@fancynancymacy]

Yes thank you. Many of my questions and concerns were addressed.

[@kathleensadventures]

I just have to say that in my case, “left untreated” wasn’t enough to keep my low grade DCIS tame. For bodies like mine who grow in response to injury, I would add “left unstabbed” because with every biopsy, my grade and palpability got grossly worse after ten years of being barely detectable. Now I’m getting a mastectomy and I blame my three biopsies for this. I wish I had been born when my grandmother was born because if I had, and these overly-alarmed radiologists had not been invited into my life, I would have been able to have two breasts for the second half of my life. Just had to share my hindsight perspective. No one wants to demonize biopsies, including me. But the fact is, they are causing some of us to have mastectomies. …Super happy to hear about precision! Sign me up!

[@sue3745]

Do you mean you had no treatment for DCIS? not even a lumpectomy?

[@kathleensadventures]

What I mean is that I wd have needed no treatment if I hadn’t had any biopsies.

[@sue3745]

@@kathleensadventures I would not have either. I had the biopsy because there was something wrong in my mammograms. But you don't know that because you had biopsies they were causal. I would think they did not do a biopsy if nothing was wrong.

[@MK-ih6wp]

@@kathleensadventures I hear you, Kathleen. I am so sorry that your cancer flared after every biopsy. This is my biggest fear with my Mom. It's hard to know whether to take action or just wait and see if it resolves itself on the next round of images. Mom has had MANY many false alarm mamos during her lifetime...

[@estrogendiaries]

@@sue3745 Totally. It's a tough call though once you know you have high growth factors. I had no growth for ten years and then explosive growth after biopsies, so I do know. And my doc agrees--it's because of my high growth factors.

[@sheila7814]

With regards to Mcintosh quote…. My low grade tumor (grade 2) stage 1, doubled in size from when they found it (4mm) until removed… measured 8mm in only a month and a half.

[@Lisa_5591]

I had DCIS 22 years ago with lumpectomy and radiation. I was 34 years old. Now 56 years old and just diagnosed with IDC.

[@purple777royal]

That is another reason why I am considering to agree with Mastectomy. I am diagnosed with DCIS Grade 2.

[@cecygamvela435]

Did you do biopsy to find out that you have DCIS?

[@alicemurphy1145]

@@purple777royal There are a lot of other things that come into play with somebody with IDC, or any invasive breast cancer. Family history......age.....the hormone receptors of the cells......Lisa went a long time with no reoccurrence and was very young with her DCIS dx. This could be something totally new. You can also still get IBC, even with a total mastectomy. Please get another opinion and talk to your Dr.

[@betsypetro1207]

I just got my test results from my biopsy. I need to know more information about DCIS and what to expect.

[@LostinTranslationss]

Good presentation. Look like study/research on high grade DCIS with microinvasion still less. Or microinvasion considered as IDC?

[@pattycarol5191]

I was diagnosed with DCIS back in 2018. Had a it taken out and followed up with radiation. Now here in 2022. It came back in the same breast high grade..so now the surgeon wants to remove the entire breast. I also have a mass in the other breast so they want to take it out because of the precancer in the other breast.

[@sheila7814]

Situations like this are why I decided to do a double mastectomy. I hope you are doing well now. ❤

[@krivoli86]

How about metabolic therapy?

[@jandlesmith]

What is the difference between DCIS and BI-RADS A4? I have BI-RADS A4, not sure what that is or what it means? Thanks

[@joannamaz8246]

Hello, when DCIS includes Stage 0, cribiform and comedo necrosis, er positive with high nuclear grade, after a lumpectomy with clean margins,what additional treatment is truly appropriate? Isn't 30+ radiation sessions somewhat too aggressive? Overtreatment is the main concern

[@SharecancersupportOrganization]

Hello and thank you for your comment. Our volunteers on the Breast Cancer Helpline can help answer any specific questions you have about DCIS and treatment. Call: 844-275-7427

[@MK-ih6wp]

Valid concern. What did you decide to do? Hope you are healing well!

[@joannamaz8246]

@@MK-ih6wp I didn't pursue any additional aggressive treatments after the lumpectomy, thanks be to God I'm doing well and healthy 🙏❤

[@northerngirl2624]

@@joannamaz8246 Similar diagnosis as you. I am taking 5mg of tamoxifen instead of 20.

[@roserustypajarit8117]

Do we really need radiation therapy plus hormonal therapy after lumpectomy even if it is all cleared

[@marthaorellana9026]

l have DCIS Diagnosed in September 2022 and still waiting for results from. Dr

[@lindafourie473]

I have Dcis fast growing. I am hormone blockers. My question is my breast is very sore. I am really struggling. What can I use for pain?

[@marthaorellana9026]

God bless you 🙏 ❤️

[@MK-ih6wp]

RSO

[@melissadd7597]

Have you changed your diet fully to reduce inflammation, or help yourself limit stressors in your life? So many good supplements for inflammation when taken consistently: vita D3, bosweilla, turmeric, I got my vita D leves up to 94! Most people are deficient around 35. Vita D kills inflammation almost more than anything else. Hope you feel better.

[@sheila7814]

@@melissadd7597I did this as well and had good results

[@balbirbasi4302]

❤

[@rossygt1480]

What DCIS stand for?

[@kathywinters4052]

Ductal carcinoma in situ (DCIS)

[@cathyhelmuth823]

Poll Question 1- 1

[@janelleotto6539]

2

[@lindaswann8345]

Stage 0

[@ginamagistrado6561]

goood day,im gina r. magistrado 3days ago my biopsy result was out and i &i was poitive for breast cancer im so depressed knoing this i need help pls

[@marthaorellana9026]

God bless you 🙏 ❤️