Can you have DCIS only & not be put on a hormone blocker?
or even referred to an oncologist?
Hi guys. My fraternal twin sister just got diagnosed with what appears to be 6mm of DCIS. I was diagnosed with both IDC and DCIS in 2020, and we have no other family history.
My sister said her doctor told her she may need just the breast surgeon, and the surgeon may not even refer her to an oncologist. My sister is saying "maybe I don't even need hormone blockers. I don't want to overtreat this." She's 44, had her ovaries removed a few years ago because of endometriosis, and is on an estrogen replacement pill that she doesn't want to stop taking.
I'm just floored to hear that she may not be put on an estrogen blocker or even referred to talk to an oncologist. She's forever at risk for developing a second breast cancer now, and that risk is even more concerning given that I also had breast cancer. She's also saying "I may not need radiation." What?
Comments
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so I’m significantly older than your sister (well I think 14 years is significant) so take this for what it’s worth. When I was diagnosed my surgeon talked about how DCIS is probably over treated in a lot of people and that at some point how it is treated may change. With that being said one of my three options was actual to try to get into a medical study where they would wait and watch. I did not go that route. If I had chosen a mastectomy then radiation might have been off the table (so that is where that option might come from) but obviously with a lumpectomy then radiation if usually only off the table dependent on age and family history (older you are and no family history).
My MO is very upfront that with DCIS if the side effects from the medication is too much then based on the situation she would have me stop based on % it’s reducing my risk compared to not taking. My long winded point is that sometimes when a doctor is talking we focus on bits and pieces but it’s not the whole picture. If your sister DCIS is Estrogen negative or not strongly E+ , then yes maybe she would not benefit. But I could take individual things that were said to me and create a narrative that matches what your sister said but that was far from the whole picture I was given I’m hoping her doctor wasn’t trying to paint a picture for her that was hopefully but skipped over the details that give a more accurate picture
But yes it seems unlikely that she would not be referred to oncologist no matter what, and I think that the surgeon hopefully will give her clear picture of what the usual scope of treatment is but I still think that your diagnosis puts the whole thing in a different light
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Well, the first step is to see if her DCIS even has hormone receptors. If it doesn't, then hormone blockers make a whole lot less sense.
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For sure. We're still waiting on the pathology results to find out about hormone receptors and HER-2. More than likely, though, it'll be hormone receptor positive.
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I had a 6 mmDCIS mass. I had a BMX. No oncologist, no radiation, no hormone blockers.
I go to an. NCI designated cancer center. Six years and counting with no further issues.
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Orangeflower - if your sister is being sent to a breast surgeon and might not need a medical oncologist, what are the credentials of the doctor who is making these predictions about her possible course of treatment? I would want a medical oncologist to weigh in on what she should do regarding whether to take tamoxifen or an AI and whether to continue her hormone replacement. But it is still early on.
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First and foremost if your sister’s DCIS is hormone receptor positive she needs to stop hormone replacement therapy immediately - estrogen is her enemy. Once she does she can be monitored closely and take a “wait and see” approach if she doesn’t want to take an estrogen blocker
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Hormone therapy isn't a treatment for DCIS in and of itself, but it can be considered an additional (adjuvant) therapy given after surgery or radiation in an attempt to decrease your chance of developing a recurrence of DCIS or invasive breast cancer in either breast in the future.
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