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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Thank you, I never have been in a group before, I just need to know what other people think and going with there cancer.

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@mylane

I had a lumpectomy July, small tumor grade one Stage one. Invasive Ductal carcinoma.had oncotype score of 4 no chemo no radiation my choice because other problems that I have. The Dr. Wanted me to take Tamoxifen daily for five years. I will be 72 years old in couple of weeks. I’m not going to do anything for now. I pray I did the right thing.

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I am your age. My tumor was ER positive, caught early, small (< one centimeter) & not invasive. I did radiation, but refused the suggested Tamoxifen because of the possible side effects & because of other medical problems I have. I am very comfortable with my decision. The majority of the doctors I saw (PCP, Gynecologist, surgeon & oncology radiologist) we’re pushing the drug. My oncologist agreed with my decision to not take it! Weighing the option of having to worry with or about the side effects for 5 years (as opposed to not) made me choose to not take the drug. I hope you can find peace of mind in your decision.

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@anniemae2

I am your age. My tumor was ER positive, caught early, small (< one centimeter) & not invasive. I did radiation, but refused the suggested Tamoxifen because of the possible side effects & because of other medical problems I have. I am very comfortable with my decision. The majority of the doctors I saw (PCP, Gynecologist, surgeon & oncology radiologist) we’re pushing the drug. My oncologist agreed with my decision to not take it! Weighing the option of having to worry with or about the side effects for 5 years (as opposed to not) made me choose to not take the drug. I hope you can find peace of mind in your decision.

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I had a similar situation. A Stage 1A E+, P+, HER2- tumor. Smaller than 1 cm including clean margins. Sentinel node biopsy showed no cancer cells. I declined radiation after OncotypeDX showed a low risk of recurrence 'within 9 years' of under 6%. So also no chemo. To put the 6% in perspective, 1 in 8 women in the US are predicted, based on statistics, to get cancer sometime over a lifetime. That means 12.5% of women in America have a cancer occurrence risk, which is astounding honestly.

I declined atomatase inhibitors at the suggestion of one oncologist and the concurrence of another. If cancer recurs, I'll never know if it would have anyway as the AIs would have still left me with a 3% risk. And the guaranteed side effects of the AIs. Everyone's journey is personal though.

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@kathyomaha55

I even had a lumpectomy when it was just "micro calcifications" - these are pre-cancerous as well. I had one in 2016 - 2 years before being diagnosed with IDC. The Oncotype test is a gene test done on the tissue removed. Mine was 22 - so no chemo.

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Hi, I also have the micro calcifications. I’ve been researching the treatments after surgery. I’m new to this so I hope asking a question won’t be offensive…….
Since you had another type of breast cancer 2 years later, did you have radiation or hormone therapy after having the lumpectomy with the micro calcifications prior to that?
I’m 62 & also thinking about the quality of life these treatments effect. I’m not sure I want to give up 5 years of life feeling like crap because of a med & having additional testing to watch for health issues caused by the side effects.. I already have issues with bone, joint pain (arthritis) I have family history on both sides of heart problems (oldest person to live on my fathers side was 63!) I have low energy daily, thinning hair due to age & I don’t want to risk a worse cancer of the liver or uterus. My mom had Osteoporosis so I may be a candidate for that as well since I’ve never been tested. From what I’ve researched meds would only exasperate what I already deal with daily. With radiation you have to be monitored the rest of your life for heart disease or lung cancer (former smoker for 45 years) since radiation effects last the rest of your life. These problems almost sound scarier than the possibility of a breast cancer returning.

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@sakina

I have been diagnosed with DCIS too and have undergone MRI.
I will have to undergo a lumpectomy followed by radiation.
One thing to keep in mind is the positioning for MRI is very uncomfortable. They told me it is the ‘superwoman’ pose! Face down arms extended …. be prepared to stay in that posture for atleast half an hour.
My MRI confirmed the DCIS but it also showed a non mass density for which now I have to undergo another biopsy.
This time it is MRI guided biopsy.
Did anyone else have this?

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It might depend on how the MRI table is made and/or set up? I had an MRI with contrast and it was like a massage table with my hips and knees somewhat flexed and my face was very comforted by a soft padded face shaped support. I could have fallen asleep except for the loud music in the head phones, LOL!

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@rene1636

Hi, I also have the micro calcifications. I’ve been researching the treatments after surgery. I’m new to this so I hope asking a question won’t be offensive…….
Since you had another type of breast cancer 2 years later, did you have radiation or hormone therapy after having the lumpectomy with the micro calcifications prior to that?
I’m 62 & also thinking about the quality of life these treatments effect. I’m not sure I want to give up 5 years of life feeling like crap because of a med & having additional testing to watch for health issues caused by the side effects.. I already have issues with bone, joint pain (arthritis) I have family history on both sides of heart problems (oldest person to live on my fathers side was 63!) I have low energy daily, thinning hair due to age & I don’t want to risk a worse cancer of the liver or uterus. My mom had Osteoporosis so I may be a candidate for that as well since I’ve never been tested. From what I’ve researched meds would only exasperate what I already deal with daily. With radiation you have to be monitored the rest of your life for heart disease or lung cancer (former smoker for 45 years) since radiation effects last the rest of your life. These problems almost sound scarier than the possibility of a breast cancer returning.

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For the micro calcifications - I did not have any further treatment. Just made sure I got my annual mammogram. They were in a similar area where my subsequent IDC was found 2 years later. I never asked the oncologist if they could be related. I was 62 when diagnosed with BC. I know it's worrying - but if it's just micro calcifications - get them taken out and make sure you get annual exams.

My Right breast was involved - so I had radiation there. I was NEVER told I had to worry about heart disease or lung cancer from the radiation. And I really trust my radiologist. I get a bone scan every year and take 2000 units of D3 Oil every day. My bones have been stable on the AI. I was switched after 12 months from anastrozole to Exemestane. My joint pain resolved and I also have arthritis. Each person had their own side effects to each drug. You need to work with an oncologist that you need to Trust.

My main side effect now is insomnia. I have 14 more months to get to 5 years. I'm determined to make that. MOST people on an AI have NO side effects - something like 60% of them. I've met ladies who went the 5 years with no side effects. People with no side effects - do not post on this forum.

If breast cancer returns - it most likely comes back in your bones, brain, liver or lungs. To me that was scarier than side effects. If you do get a BC, make sure you have the OncoDX test. It's also an indicator of how likely it will come back. A test done on the tumor tissue.

I need to add - I was taking Prempro as a hormone replacement for like about 22 years and had only started to stop taking it a few months before being diagnosed with breast cancer. I was aware of the risks of Prempro (main one being breast cancer) - so let me just say I felt so much better on it, I assumed I'd never have to worry about breast cancer. So I took a risk & lost. Looking back I should have stopped it after I turned 50. I was 39 when I went into menopause. I worked in IT and needed my brain to be sharp for work & felt the Prempro helped. I'll never know if the Prempro was the cause or not. When I discussed it with my oncologist - she said it may have contributed but probably was not the sole cause. If they knew the real causes - they'd let us know!

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Hello beautiful humans,

I am 46 years old and I was just diagnosed with DCIS and IDC on my left breast. The doctor found three masses on my left breast and none on the right one. Please see my raport below. Two masses are DCIS and IDC.

Meeting my surgeon Dr. Elisa Port on September 21st.

Do you any recommendations for other surgeons in New York City?

Peace and light

A. Breast, left, 2:00, +8CM, core biopsy:
- Invasive moderately differentiated ductal carcinoma spanning at least 11 mm in this
material, see note.
- Ductal carcinoma in situ (DCIS), intermediate nuclear grade, solid and cribriform types.
B. Breast, left, 2:00, +2CM, core biopsy:
- Invasive well differentiated ductal carcinoma, spanning at least 7 mm in this material.
- Ductal carcinoma in situ (DCIS), intermediate nuclear grade, solid and cribriform types.
Note: Prognostic/predictive markers are being performed and results will follow as an
addendum.

GROSS DESCRIPTION:
PART A labeled “LEFT 2:00 + 8CM” is received in formalin and consists of three tan/yellow cores measuring from
1.5 to 2.0 x 0.2 x 0.2 cm. The specimen is entirely submitted in one cassette.
SUMMARY OF SECTIONS: Undesignated 1; total 1
1.5 to 1.7 x 0.2 x 0.2 cm. The specimen is entirely submitted in one cassette.
SUMMARY OF SECTIONS: Undesignated 1; total 1

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Hi all. I had to wait several weeks to get my second round of tests at the breast center in Hackensack (NJ) and these people are serious! 40 minutes in Mammography, 45 minutes in Ultrasound and then the doctor came in and scanned again! Then 2 biopsies for my right breast and 1 for my left. That was Wednesday. Then today I had stereotactic biopsies for both breasts. I was in the lab for over 2 hours. Again, these folks are serious. I’m home now with ice packs on my boobies and wanted to say that I had all these tests done in my hometown and what a difference! So far, they found several abnormalities in both breasts (not “just” one) that my doctors at home never saw at all. I’m so glad I went for a second opinion at a serious breast center. I’ll find out next Thursday what the results are when I see my second-opinion doctor again. I’ll let you know. Good health and well-wishes to all!

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@polianad22

Hello beautiful humans,

I am 46 years old and I was just diagnosed with DCIS and IDC on my left breast. The doctor found three masses on my left breast and none on the right one. Please see my raport below. Two masses are DCIS and IDC.

Meeting my surgeon Dr. Elisa Port on September 21st.

Do you any recommendations for other surgeons in New York City?

Peace and light

A. Breast, left, 2:00, +8CM, core biopsy:
- Invasive moderately differentiated ductal carcinoma spanning at least 11 mm in this
material, see note.
- Ductal carcinoma in situ (DCIS), intermediate nuclear grade, solid and cribriform types.
B. Breast, left, 2:00, +2CM, core biopsy:
- Invasive well differentiated ductal carcinoma, spanning at least 7 mm in this material.
- Ductal carcinoma in situ (DCIS), intermediate nuclear grade, solid and cribriform types.
Note: Prognostic/predictive markers are being performed and results will follow as an
addendum.

GROSS DESCRIPTION:
PART A labeled “LEFT 2:00 + 8CM” is received in formalin and consists of three tan/yellow cores measuring from
1.5 to 2.0 x 0.2 x 0.2 cm. The specimen is entirely submitted in one cassette.
SUMMARY OF SECTIONS: Undesignated 1; total 1
1.5 to 1.7 x 0.2 x 0.2 cm. The specimen is entirely submitted in one cassette.
SUMMARY OF SECTIONS: Undesignated 1; total 1

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@polianad22, what did you learn at your appointment? Do you have a treatment plan or next steps?

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@tctredwell1

Hi all. I had to wait several weeks to get my second round of tests at the breast center in Hackensack (NJ) and these people are serious! 40 minutes in Mammography, 45 minutes in Ultrasound and then the doctor came in and scanned again! Then 2 biopsies for my right breast and 1 for my left. That was Wednesday. Then today I had stereotactic biopsies for both breasts. I was in the lab for over 2 hours. Again, these folks are serious. I’m home now with ice packs on my boobies and wanted to say that I had all these tests done in my hometown and what a difference! So far, they found several abnormalities in both breasts (not “just” one) that my doctors at home never saw at all. I’m so glad I went for a second opinion at a serious breast center. I’ll find out next Thursday what the results are when I see my second-opinion doctor again. I’ll let you know. Good health and well-wishes to all!

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@tctredwell1, I bet you're glad that you went for a second opinion. Rest well after such a busy few days. I'll look forward to your update after Thursday.

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