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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@tctredwell1

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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There's nothing that the patient has to do as the tumor tissue is removed at the time of surgery and a sample of it is submitted by the oncologist or surgeon for the gene testing.

It's probably a good idea to tell your surgeon and oncologist that you're interested in having the test done ahead of time so they can plan ahead. You might check with your insurance company as to coverage for the OncotypeDX but more insurers are covering it as it helps some doctors decide against recommending chemo so has a cost/benefit aspect for the insurer.

There's one condition: the OncotypeDX isn't suitable for anyone who's had cancer or chemo within the previous 12 months. And Oncotype has other tests related to breast cancer so one of them might be more relevant or helpful. Or your oncologist know of tests by other companies.

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Hi. I just got this text from my doctor:
“Good evening. I reached out to Dr. Patel yesterday. He hasn’t contacted me. There was a lot “enhancement “ on the mri which could mean nothing or all of that area is cancer. I want to see his opinion. Amanda told me some of your blood work came back abnormal so I have to see what exactly”
Earlier today I asked him about the Oncotest but he didn’t mention it. I’m so bummed. When I first met this doctor he made it sound like it was probably nothing (after the diagnostic mammo and ultrasound). Then more tests and afterwards I got the DCIS diagnosis. It sounds like the cancer is more active than he originally thought. Now I’m scared, I wasn’t before. I think maybe I should get a second opinion. The radiology people are terrific but I’m not so sure about the surgeon. When he finally tells me what’s going on, I think I’ll make an appointment for a second opinion. Bleh.

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@tctredwell1

Hi. I just got this text from my doctor:
“Good evening. I reached out to Dr. Patel yesterday. He hasn’t contacted me. There was a lot “enhancement “ on the mri which could mean nothing or all of that area is cancer. I want to see his opinion. Amanda told me some of your blood work came back abnormal so I have to see what exactly”
Earlier today I asked him about the Oncotest but he didn’t mention it. I’m so bummed. When I first met this doctor he made it sound like it was probably nothing (after the diagnostic mammo and ultrasound). Then more tests and afterwards I got the DCIS diagnosis. It sounds like the cancer is more active than he originally thought. Now I’m scared, I wasn’t before. I think maybe I should get a second opinion. The radiology people are terrific but I’m not so sure about the surgeon. When he finally tells me what’s going on, I think I’ll make an appointment for a second opinion. Bleh.

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DCIS, by definition means ductal carcinoma in situ, and not invasive. The recommendation usually includes a lumpectomy because while it isn’t invasive yet, it is carcinoma, few doctors would recommend to wait until it starts to invade and increase the risks of bigger complications. Which would also include more complex treatments. I know this is a fearful time but when they talk about breast cancer being caught early and being very treatable, this is exactly the situation they are referring too. I would definitely get a second opinion if I was in any way uncomfortable. You need to be able to make the best decision for yourself, and I think you need to trust your team to do that.
Are being treated at regional center or is there one close enough to get your second opinion?

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I was referred to a “breast doctor” by my new primary care physician. The breast doctor is a DO and not an oncologist. He performed the first biopsy at a local hospital and the second biopsy was performed by a radiologist at the same hospital. Once I get the results of the breast MRI I think I’m going to contact a The John Theurer Cancer Center (about 30 minutes away) for a second opinion.

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@tctredwell1

I was referred to a “breast doctor” by my new primary care physician. The breast doctor is a DO and not an oncologist. He performed the first biopsy at a local hospital and the second biopsy was performed by a radiologist at the same hospital. Once I get the results of the breast MRI I think I’m going to contact a The John Theurer Cancer Center (about 30 minutes away) for a second opinion.

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@tctredwell1 I'm glad you are going to the John Theurer Cancer Center for the second opinion. Hang in there. Prayers are with you. One day at a time. Hugs

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@tctredwell1

I was referred to a “breast doctor” by my new primary care physician. The breast doctor is a DO and not an oncologist. He performed the first biopsy at a local hospital and the second biopsy was performed by a radiologist at the same hospital. Once I get the results of the breast MRI I think I’m going to contact a The John Theurer Cancer Center (about 30 minutes away) for a second opinion.

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Good for you for looking toward the second opinion. Another benefit of being at the cancer center for the second opinion is that you will have oncology doctors helping you to understand everything better. There is so much information, some good some not so good on the internet, definitely better to get all the information you can from your own doctors, especially since there are soooooooo many variables to breast cancer.
I am glad you came here for support. There are many of us who have been through varying stages of breast cancer to lean on. In December I will be an 18 year survivor.
Do you have friends and family to physically lean on when you need it? Like someone who can go with you to appointments and help you ask questions, and get all the answers?

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@tctredwell1

I was referred to a “breast doctor” by my new primary care physician. The breast doctor is a DO and not an oncologist. He performed the first biopsy at a local hospital and the second biopsy was performed by a radiologist at the same hospital. Once I get the results of the breast MRI I think I’m going to contact a The John Theurer Cancer Center (about 30 minutes away) for a second opinion.

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I'm glad you're getting a second opinion. I don't know what a 'breast doctor" even is but I'd stick with experienced board-certified oncologists. And get areas two opinions about anything related to breast cancer diagnosis and treatment.

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@auntieoakley

Good for you for looking toward the second opinion. Another benefit of being at the cancer center for the second opinion is that you will have oncology doctors helping you to understand everything better. There is so much information, some good some not so good on the internet, definitely better to get all the information you can from your own doctors, especially since there are soooooooo many variables to breast cancer.
I am glad you came here for support. There are many of us who have been through varying stages of breast cancer to lean on. In December I will be an 18 year survivor.
Do you have friends and family to physically lean on when you need it? Like someone who can go with you to appointments and help you ask questions, and get all the answers?

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Thank you for your reply. Unfortunately, I don’t have any family to lean on but my friend and neighbor has been a tremendous support. However she is battling her own health difficulties and I don’t know when she’d be well enough to accompany me. We’ll have to see. I was able to get through to one of the recommended doctors at the center last night who clarified some confusion. He said the enhancement on the MRI film was not me moving (a tiny bit) during the breast MRI. He said the radiologist will mark the film with a symbol indicating movement. He said images caused by movement are different than “enhancement”. The center doctor said that the enhancement area probably needed to be biopsied. That would be biopsy #3 for me. I texted my own doctor back with this info. The center wants me to call back on Monday for an appointment next week and to arrange for the transfer of results. Then the center doctor said his whole office is closed not only for Labor Day weekend but for the whole week ! Aahhh!

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@sequoia

@tctredwell1 I'm glad you are going to the John Theurer Cancer Center for the second opinion. Hang in there. Prayers are with you. One day at a time. Hugs

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Thank you for your support. It means a lot. 😊

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@auntieoakley

Good for you for looking toward the second opinion. Another benefit of being at the cancer center for the second opinion is that you will have oncology doctors helping you to understand everything better. There is so much information, some good some not so good on the internet, definitely better to get all the information you can from your own doctors, especially since there are soooooooo many variables to breast cancer.
I am glad you came here for support. There are many of us who have been through varying stages of breast cancer to lean on. In December I will be an 18 year survivor.
Do you have friends and family to physically lean on when you need it? Like someone who can go with you to appointments and help you ask questions, and get all the answers?

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All is well for now. I went to see another doctor yesterday for a second opinion. He said he and his team need time to go over all the labs and get the rest of that MRI report from Christ Hospital. I hope he has better luck than I did! He thinks I’ll need more tests but his office will let me know asap. Also his office is closed next week so I won’t see him for awhile. I’m glad for the rest but not the waiting…😱

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