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Diagnosed with DCIS: How do I decide on treatment?
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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@hfoster41 it sounds like either your MD is misinformed, misspoke or you heard wrong 🙂 There is an Oncotype for DCIS and it is only for those who are HER2 negative, not positive- and ER+.
@nambu, as I wrote before, don't you think that if a "natural" method of reducing or eliminating estrogen is effective, that the side effects will be the same as the aromatase inhibitors. Why not give the AI a try? I would not assume horrific side effects. Many of us do fine on them. That said, you could also get a second opinion with your stage 0, low grade DCIS, which may be a precancer.
I too have DCIS and ER positive. I was a grade 3 and had lumpectomy that removed all stage 0 cancer. I am waiting to go for radiation consultation on December 16th. I am also waiting for genetic test results. I am curious how to get approved for Oncotype DCIS DX test. My oncologist said it was only an option for invasive or Her2 cancer? When I look on their website it says ER positive and high grade should be qualifying. Anyone have info on this?
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1 ReactionHi,
I am in your situation regarding the AI pills. I had DCIS stage 0 and a low grade. I did the lumpectomy and radiation 5 times which was cleaning up. The doctors suggest AI pills and I am not able to decide. I talked with my 2 daughters who are cancer researchers and a pharmacist. I have to decide within a month. I am researching natural ways to lower the estrogen since I am ER/PR+.
I would not assume you are going to have serious side effects from aromatase inhibitors. It might be worth it to try. Many of us tolerate them well.
The other thing is that if a natural alternative is effective in shutting down adrenal estrogen, you will most likely have the same side effects since side effects are mainly, presumably, from estrogen deprivation.
As for DCIS, some cases are not being treated aggressively since it is a "precancer" technically, but every case is different. If you are not happy with a doc's recommendation, it is always reassuring to get another opinion (I got 4!).
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2 ReactionsHi,
I was diagnosed with DCIS ( stage 0) and did a lumpectomy and 5 radiations only to clean up.
I am in the same situation where I do not want to take the Aromatase inhibitors due to the side effects. I am researching other holistic ways since I am healthy and don't want other problems in my body.
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1 ReactionI am diagnosed with DCIS and did a lumpectomy and the pathology report was ER/PR +. I did 5 radiation sessions for 5 mins and it was not hard. I am worried about the antihormone pill
( Armidex) that I have to take because it has a lot of side effects. I am thinking of other holistic ways to reduce estrogen.
I researched a lot and read papers at NCBI and DCIS is overtreated and I have to decide within 1 month if I am taking the pills or not. It is a hard decision.
Hi all. About a week after the surgery, my very swollen right breast started bleeding and has been bleeding ever since. I saw the surgeon last week and he thought it was great (of course the boob didn’t bleed much at all during the exam with me lying on my back). He told me to keep doing what I was doing (changing the dressings and wrapping my breast in a sanitary napkins). He said it was good the old brown blood was draining out.
Of course that night (or the next night) when I went to change the dressing, it was like a flood. There was a puddle of blood on the floor! I talked myself out of fainting and kept applying pressure until the flow slowed down enough for me to pile on the gauze and sanitary napkins. Since then, the amount of blood is much less but it’s not done.
Dealing with these bleeding incisions is one thing but having to mop up the mess and continually hand wash bloody bras and tops is exhausting (and I want to send the surgeon a bill for my time!)
Anyway, I saw the oncologist last week, as well, and immediately he starts talking about radiation and Aromasin.
My head started spinning. He said that my Estrogen Receptor was a strong positive and that he was going to do genetic testing.
*The paperwork I received said, “Estrogen Receptor - Positive - 99%” and “Progesterone Receptor - Low Positive - 7%”
*Then today I received a test result that said, “Cancer Antigen 27.29 Details:
Your Value is 28.1”
Sorry, I’m new at this. Can someone please translate?
I’m doing the same! DCIS but there was nothing present in the lumpectomy (removed with biopsy) so I’m passing on radiation. Not only for the side effects & residual effects but also so I have a possible option of another lumpectomy in case of reoccurrence. I am considering the AI’s since my type was ER/PR+ depending on what’s recommended with my other health issues. My Oncotype DX DCIS score came back as a 28 (in the low category) with a 6% risk with radiation & an 8% risk with just the lumpectomy. I’m willing to “roll the dice” for a 2% difference by not getting radiation.
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1 ReactionYour English is fine, Nayade 🙂
These decisions aren't always easy but cancer predictions aren't perfect either. Nor are drugs and treatments. I have two friends who had stage 0 tumors removed who are doing what your friend is...not doing chemo, drugs or radiation for multiple reasons but doing self-exams weekly, physician-administered breast exams every 1-2 months and yearly mammogram and ultrasound exams. Both of these women also had sentinel lymph node biopsies and genomics testing to evaluate recurrence risk, so there was that difference.
If your friend has any second thoughts later, maybe she'd reconsider tamoxifen as the anti-hormone therapy likely gives her the most recurrence risk reduction of the chemo/radiation/drugs options and there's no deadline for adding tamoxifen whereas chemo and radiation options can be time-sensitive. But at least she'll be aware of the importance of breast exams so likely to notice anything that merits attention.
You're a good friend and she's lucky to have someone dedicated to finding information to make the right choices.
You’re English is fine. I haven’t discussed after-care with the doctor yet but I did ask him about Oncotype DX testing and he said that would be a discussion for the oncologists later. But then I think he said “this kind of testing is not usual for non-invasives” and walked away. I guess my cancer was considered non-invasive (before surgery) but I’m still going to ask about it at the follow-up appointment!
Nayade - thank you for sharing your experience. Everything helps. 🌸