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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I don't what your doctor will recommend but the recommendation will undoubtedly be governed largely the stage of the cancer. Which is determined by several variables, including size of the tumor, whether any lymph nodes are affected and other more qualitative things like location of the cancer and containment of cancer cells. The other factors include the type of cancer which the biopsy will note.

I'm assuming, since you have a diagnosis, that there was at least a biopsy done and the pathology report will yield a lot of information. I'd start by asking whoever made the cancer diagnosis these question. (DCIS is a cancer diagnosis though might be a Stage 0 which some oncologists consider a kind of 'pre-cancer' or possible-to-become-cancer.) And get a copy of any medical record in case you want to get a second opinion. And ask about any testing that can yield more data.

If a lumpectomy is suggested and you're worried about having one, I had one and it was a very simple procedure that healed, in my case at least, scar-free. (A small tumor, excellent surgeon, cancer-free margins.) I have a small scar from the removal of a lymph node that looks like a kitten-scratch and is nearly invisible eleven months later.) I had no pain from the lumpectomy and lymph node removal after discomfort (buy not pain) the first day.

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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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If the DCIS is contained and not invasive, you will probably have a lumpectomy but choices about other treatments. It is true that contained DCIS is considered by some to be a pre-cancer so anything you do may be preventative rather than treating an active cancer. You may have an Oncotype test done to help guide decisions.

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Welcome @tctredwell1, you've come to the right place to connect with other members who have DCIS, like @debra145 @ptown @shelleyc @collielady @jocelynk @goxango @kathyomaha55. They can share their experiences with getting a full diagnosis and deciding on treatments.

@tctredwell1, I'm sure this is all happening so face right now. All the best with your MRI today. I look forward to hear your update when/if you'd like to share.

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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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Yes - I had more than 1 MRI guided biopsy. It's kinda like "Battleship" the game - they put a grid up next to your breast - then go to the location like: A5 using the MRI. I thought it was more painful than the ultrasound biopsy. A robot did the actual needle stick - I assume the robot got the "depth" correct as well.

Mine turned out to be IDC - so it was invasive. I did a lumpectomy With 21 rounds of radiation, My OncoDX test was 22, so I did not need chemo. I had no lymph node involvement. Wishing you all the best.

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@windyshores

If the DCIS is contained and not invasive, you will probably have a lumpectomy but choices about other treatments. It is true that contained DCIS is considered by some to be a pre-cancer so anything you do may be preventative rather than treating an active cancer. You may have an Oncotype test done to help guide decisions.

Jump to this post

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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@kathyomaha55

Yes - I had more than 1 MRI guided biopsy. It's kinda like "Battleship" the game - they put a grid up next to your breast - then go to the location like: A5 using the MRI. I thought it was more painful than the ultrasound biopsy. A robot did the actual needle stick - I assume the robot got the "depth" correct as well.

Mine turned out to be IDC - so it was invasive. I did a lumpectomy With 21 rounds of radiation, My OncoDX test was 22, so I did not need chemo. I had no lymph node involvement. Wishing you all the best.

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Thank you for the reply.
Was yours initially diagnosed as DCIS? Or was it IDC from the initial diagnosis?

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@sakina

Thank you for the reply.
Was yours initially diagnosed as DCIS? Or was it IDC from the initial diagnosis?

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From the Ultrasound biopsy - it was Invasive Ductal carcinoma. In 2018. Turned out during surgery - she removed 3 tumors, 1 main one & 2 smaller ones.

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Thanks for the quick reply!😊
My MRI guided biopsy is on 31st.
The MRI showed no lymph node involvement and the left breast is cancer free. The right was diagnosed with DCIS.
I hope the next biopsy does not change this diagnosis.

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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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I too was diagnosed with DCIS with 4 micro-invasions. My surgeon was 99.9% certain that she removed all of it but because the micro-invasions were so close to breaking out of the duct she removed my sentinal Lymph node to be 100% certain. Thank goodness everything was contained in my duct. After my lumpectomy, I underwent 25 rounds of radiation and am now on Tamoxifen for 5 years. I'm 2.5 years in. Is anyone else on Tamoxifen for DCIS by any chance? I'd love to hear from some of you about being on the drug. Thank you! It's nice to finally find a forum for this topic.

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