Diagnosed with DCIS: How do I decide on treatment?

Posted by tctredwell1 @tctredwell1, Aug 23, 2022

I was diagnosed with DCIS. I have to go in for a breast MRI with contrast tomorrow to see how active the cancer is. If it’s contained and not very active, do I have to have a lumpectomy?

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@vcafaro

DCIS
Recently diagnosed - weighing options

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Welcome @vcafaro, you've come to the right place to meet others who have been diagnosed with DCIS and have faced making treatment options. To help you connect with other members like you, I moved your post to this existing discussion:
- Diagnosed with DCIS: How do I decide on treatment? https://connect.mayoclinic.org/discussion/dcis/

I did this so you can read previous posts and connect with members like @tctredwell1 @sakina @kathyomaha55 @jennie23b @boathouse @phillypeach515 @conk @lmcintosh @celica @lvp1122 and many others. Like @windyshores asks, I'd also be interested if you had Oncotype testing done?

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@phillypeach515

@rarelybees2889 Gm... I heard and read somewhere the same thing you mention. But I don't think many (Me Included) would want to sit around and wait to see what happens. I also found out that, DCIS is non-invasive, but without treatment, the abnormal cells could progress to invasive cancer over time. Left untreated, it’s estimated 20-50 percent of DCIS cases may progress to invasive breast cancer. I would be trying to kick myself knowing I had the chance to have it removed, but instead waited for testing that could take maybe years while my cancer decides to spread slowly taken my life. Have a good day and stay safe

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@phillypeach515 & @rarelybees2889 ,

I have also read about the " wait and see monitor method" of DCIS. My DCIS was intermediate grade and once the pathology from my lumpectomy came back, it showed that I had 4 microinvasions. Which means that had I chose to not act on it, within the year it would have broken through my milk duct and I would have been stage 1. The microinvasions were already so close to breaking through that I must admit that scared me. In only 365 of my mammogram the DCIS developed, so had I waited even longer I'd be in a whole other conversation. My surgeon urged me to do a lymph node removal to be 100% sure nothing actually did break through and that she got it all. I was all for being 100% positive so I had my sentinal node removed to be tested as well.

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@colleenyoung

Welcome @vcafaro, you've come to the right place to meet others who have been diagnosed with DCIS and have faced making treatment options. To help you connect with other members like you, I moved your post to this existing discussion:
- Diagnosed with DCIS: How do I decide on treatment? https://connect.mayoclinic.org/discussion/dcis/

I did this so you can read previous posts and connect with members like @tctredwell1 @sakina @kathyomaha55 @jennie23b @boathouse @phillypeach515 @conk @lmcintosh @celica @lvp1122 and many others. Like @windyshores asks, I'd also be interested if you had Oncotype testing done?

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Thanks so much for the connection!

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Thanks for sharing
Mine is LCIS
I wonder how similar they are but maybe not.
LCIS is rare.
Thanks

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@windyshores

Have you had an Oncotype for DCIS?

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No, not yet. I have not seen the breast surgeon …I’ll keep you posted.

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@vcafaro

DCIS
Recently diagnosed - weighing options

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I’m sorry you have to walk this out, it’s a lot. I just had a bilateral mastectomy with sentinel node biopsy on Feb 7th after finding dcis in left breast . My risk factor was high for recurrence with lumpectomy and radiation so I decided to take my best odds with mastectomy and also remove my right one so I wasn’t waiting for it to turn on me. Now my odds are even better to not have to deal with an invasive cancer. Praying for ya!

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I had lumpectomy removed my DCIS at the end of November 22. I could not make a decision if I should have radiation treatment. My tissue test results are as following:

Final Diagnosis
A. Lymph node, Right, Axillary, Sentinel, excision:
One reactive lymph node, negative for metastatic carcinoma (0/1).
B. Breast, Right, Partial Mastectomy:
Ductal carcinoma in situ (DCIS), solid and cribriform type, intermediate grade.
Biopsy site changes.
Fibrocystic changes including apocrine metaplasia and cysts.

Breast DCIS Resection template (2022)

Procedure:
Excision (less than total mastectomy)

Specimen Laterality:
Right

Tumor Site:
Central, 10 o'clock

Histologic Type:
Ductal carcinoma in situ.

Size (Extent) of DCIS:
Estimated size (extent) of DCIS is at least in Millimeters (mm): ____8____ mm

Architectural Patterns:
Solid
Cribriform

Nuclear Grade:
Grade 2 (intermediate)

Necrosis (in DCIS):
Not identified

Margin Status:
All margins negative for DCIS
Distance from DCIS to Closest Margin: Superior:

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@jennie23b

@phillypeach515 & @rarelybees2889 ,

I have also read about the " wait and see monitor method" of DCIS. My DCIS was intermediate grade and once the pathology from my lumpectomy came back, it showed that I had 4 microinvasions. Which means that had I chose to not act on it, within the year it would have broken through my milk duct and I would have been stage 1. The microinvasions were already so close to breaking through that I must admit that scared me. In only 365 of my mammogram the DCIS developed, so had I waited even longer I'd be in a whole other conversation. My surgeon urged me to do a lymph node removal to be 100% sure nothing actually did break through and that she got it all. I was all for being 100% positive so I had my sentinal node removed to be tested as well.

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Thank God you went and did the right thing and not waited around. I've noticed it on a website and on YouTube. There is a lot of information floating around and most people might follow along because they may think they're in the same situation, and it's like your mind is playing tricks on you. I am truly blessed because I am 63 and haven't had a Mammo in 15 years and made that decision to make an appointment. I was thinking stupid telling my Dr Oooh what I don't know, don't hurt. And I am so happy I called and made that appointment because this could of spread, and only God knows how long it has been sitting there. What I am saying is at the end of the day, you are the one that has to make that decision when it comes to your life. I'm waiting on the date now when to start my Radiation, which she said 3 weeks and 5 days out of the week. Also going to be on the medication for 5 years and then I need to have more surgery done making my left breast the size of my right breast that had the cancer. I will keep you and everyone dealing with cancer, along with other Illness in my prayers. Always!

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@conk

I had a lumpectomy four days ago for what was diagnosed as DCIS stage 0. The thought of cancer inside me was far worse than the surgery. I finally looked closely at my breast last night and can't really see any difference in the appearance. I was initially told that I would have radiation, but I don't know when that begins. Since my cancer wasn't estrogen induced, I will not take the meds for 5 years. Yes, I am still worried, but the lumpectomy wasn't that bad. Good luck.

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I went for a second opinion, and thank God I did. I'm facing two types of cancer and many months of treatment. I am scheduled for a mastectomy in a week. Ladies, get that second opinion.

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@phillypeach515

Thank God you went and did the right thing and not waited around. I've noticed it on a website and on YouTube. There is a lot of information floating around and most people might follow along because they may think they're in the same situation, and it's like your mind is playing tricks on you. I am truly blessed because I am 63 and haven't had a Mammo in 15 years and made that decision to make an appointment. I was thinking stupid telling my Dr Oooh what I don't know, don't hurt. And I am so happy I called and made that appointment because this could of spread, and only God knows how long it has been sitting there. What I am saying is at the end of the day, you are the one that has to make that decision when it comes to your life. I'm waiting on the date now when to start my Radiation, which she said 3 weeks and 5 days out of the week. Also going to be on the medication for 5 years and then I need to have more surgery done making my left breast the size of my right breast that had the cancer. I will keep you and everyone dealing with cancer, along with other Illness in my prayers. Always!

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It is absolutely an individual decision and no one’s diagnosis is the exact same. We are all unique yet we have a common enough thread for us to understand one another.
I also opted to have radiation. My surgeon encouraged it. I did 25 rounds. 5 days a week no weekends. I will be honest, around day 14 I felt the burn and lathered in the cream they prescribed me. But everyone’s skin is different I pray that you fair it well. After radiation was done I began Tamoxofin, as I am estrogen and progesterone positive. I wish you well on your radiation journey. It goes quick I can at least promise you that.

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