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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@callalloo

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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Callaloo - did you have to have radiation treatment or chemo after the lumpectomy?

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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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Hi Sakina,
I had a breast MRI with contrast this morning. The ear plugs I brought worked well for the noise but keeping my arms up in front of me like I was ready to dive into a pool was quite painful (in my shoulders) and I couldn’t move for almost 40 minutes. The only thing that stopped me from squeezing the “I Quit” bulb they put in my hand was the knowledge that I would have to do it all over again! I was so relieved when it was over. The tech rubbed my shoulders for a minute and that really helped. As far as biopsies go, I had one using Ultrasound to guide the surgeon and another one this month using mammography (a “Stereotactic” biopsy) but I’ve never heard of a biopsy using MRI. Sorry. Let me know what you find out.

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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.

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Thank you.

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@colleenyoung

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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Thank you. I posted my MRI journey today in response to Sakina’s reply but now I want to know about options for treatment. I haven’t gotten the results back yet from the MRI today but when I do, I will have a lot of questions! Thank you for reaching out. I really do appreciate it.

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@tctredwell1

Hi Sakina,
I had a breast MRI with contrast this morning. The ear plugs I brought worked well for the noise but keeping my arms up in front of me like I was ready to dive into a pool was quite painful (in my shoulders) and I couldn’t move for almost 40 minutes. The only thing that stopped me from squeezing the “I Quit” bulb they put in my hand was the knowledge that I would have to do it all over again! I was so relieved when it was over. The tech rubbed my shoulders for a minute and that really helped. As far as biopsies go, I had one using Ultrasound to guide the surgeon and another one this month using mammography (a “Stereotactic” biopsy) but I’ve never heard of a biopsy using MRI. Sorry. Let me know what you find out.

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My experience with the MRI was exactly like yours. The sound was bearable but the pain in my right shoulder was really bad. The very same thought like yours( I will have to go through it again if I press the bulb) kept me from pressing it!
I will share my experience with the MRI guided biopsy on the 31st.
Btw I too had a stereotactic biopsy which confirmed the DCIS.

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@sakina

My experience with the MRI was exactly like yours. The sound was bearable but the pain in my right shoulder was really bad. The very same thought like yours( I will have to go through it again if I press the bulb) kept me from pressing it!
I will share my experience with the MRI guided biopsy on the 31st.
Btw I too had a stereotactic biopsy which confirmed the DCIS.

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Yes, let me know how you make out.

I’m tentatively scheduled for surgery on the 31st but I don’t know what the results were from today’s MRI - so what kind of surgery will it be? We shall see… 🤞

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@tctredwell1

Callaloo - did you have to have radiation treatment or chemo after the lumpectomy?

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I didn't have either. I did have the OncotypeDX and the "risk of recurrence within 9 years" was 3%. So chemo wasn't recommended. And the only radiation (suggested as 'optional') was extremely site-specific to 'clean up' the area where the tumor was removed. It was described as kind of 'sweeping up crumbs' in that exact area and "could" lower the risk of recurrence in that area from 10% to 3%.

I declined the radiation as the post-surgical biopsy showed clear margins and a sentinel node biopsy was negative. The tumor was in the left breast, so closer to the heart than if in the right breast, which was a factor, and I decided that the risk-reduction payoff for the radiation wasn't persuasive. [My surgeon and oncologist kind of predicted what the OncotypeDX would show based on their combined 60 years of breast cancer experience. If either had strongly argued for the radiation, I might have decided to have it. But I was more worried about unintended consequences like side effects for so small a possible statistical advantage.]

The decisions I made were kind of in line with what a lot of older women, with first-time breast cancers, are making according to my surgeon. The same cancer I had would have been exponentially faster-growing and more aggressive in a younger woman so the decisions would have been different.

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@tctredwell1

Yes, let me know how you make out.

I’m tentatively scheduled for surgery on the 31st but I don’t know what the results were from today’s MRI - so what kind of surgery will it be? We shall see… 🤞

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So you'll likely learn what to expect over the next few days at least. If you don't hear from the surgeon's office, it makes sense (to me at least) to contact them and find out what's being planned so you can know exactly what to expect.

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@callalloo

So you'll likely learn what to expect over the next few days at least. If you don't hear from the surgeon's office, it makes sense (to me at least) to contact them and find out what's being planned so you can know exactly what to expect.

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Thank you. I did speak to Amanda at my doctor’s office today and she said she’ll speak to him and they’ll get back to me asap. I’ll let you know what I find out.

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@callalloo

I didn't have either. I did have the OncotypeDX and the "risk of recurrence within 9 years" was 3%. So chemo wasn't recommended. And the only radiation (suggested as 'optional') was extremely site-specific to 'clean up' the area where the tumor was removed. It was described as kind of 'sweeping up crumbs' in that exact area and "could" lower the risk of recurrence in that area from 10% to 3%.

I declined the radiation as the post-surgical biopsy showed clear margins and a sentinel node biopsy was negative. The tumor was in the left breast, so closer to the heart than if in the right breast, which was a factor, and I decided that the risk-reduction payoff for the radiation wasn't persuasive. [My surgeon and oncologist kind of predicted what the OncotypeDX would show based on their combined 60 years of breast cancer experience. If either had strongly argued for the radiation, I might have decided to have it. But I was more worried about unintended consequences like side effects for so small a possible statistical advantage.]

The decisions I made were kind of in line with what a lot of older women, with first-time breast cancers, are making according to my surgeon. The same cancer I had would have been exponentially faster-growing and more aggressive in a younger woman so the decisions would have been different.

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Thank you for this information. I want to get the Oncotype test but I don’t know what it entails. I’ll see what the doctor says but in the meantime I share your thinking about radiation and chemo (especially the chemo). I’ll keep you posted and thank you so much for your support. Really.

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