Diagnosed with DCIS: How do I decide on treatment?

@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

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.

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?

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.

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.

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.

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.

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.

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.

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… 🤞