Diagnosed with DCIS: How do I decide on treatment?

Hello all. Thank you so much for all your comments. I appreciate your comments as this is a very daunting task researching a health problem that I have no experience in, thank god for that. According to my surgeon she said that I would not need to do anything further since the DCIS was so small and at the very beginning stage. That is why she diagnosed it as stage 0. She sent me to an oncologist and she said no adjuvant. Then she says that the options, which I thought there were no options due to what my surgeon said and what my oncologist as "no adjuvant". The oncologist said there were options for prevention which are the pill or radiation. I'm so confused about what if anything I need to do at this point. I just moved and have an appointment with a new primary doctor mid September so I can't even ask her what her thoughts are. I really don't want to and I'm very worried about putting such drastic meds in my body at this stage in my life. I'm pretty healthy and the side effects scare me. I would appreciate any comments or thoughts now that I've explained a bit more about my situation. I would love to connect with anyone that has been in the same boat as I'm in and what they decided what path they chose to take.

Hi,
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.

Yes I have had surgery about 6 weeks ago. I'm so confused about what to do as I have read so many negative things about taking a pill. I feel like I should but then the next day I feel like I don't want to. I had an appointment with my oncologist and she explained what the pill would do and that was about it. When she walked out of the room she said "let me know if you want to take the pill". No other information was given to me, no resources. I've been left I feel trying to figure out what is best for me by myself. So I turned to this website and maybe I was in the wrong group because almost everyone is saying how horrible the side effects are. I'm sitting on the fence everyday. Not sure how long I have to make my decision about the treatment.

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?

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 too was diagnosed with DCIS with 4 micro-invasions. My surgeon was 99.9% certain that she removed all of it but because the micro-invasions were so close to breaking out of the duct she removed my sentinal Lymph node to be 100% certain. Thank goodness everything was contained in my duct. After my lumpectomy, I underwent 25 rounds of radiation and am now on Tamoxifen for 5 years. I'm 2.5 years in. Is anyone else on Tamoxifen for DCIS by any chance? I'd love to hear from some of you about being on the drug. Thank you! It's nice to finally find a forum for this topic.

Good morning. I saw this conversation and thought I'd try to inject what little knowledge I have gained being a stage 4 Invasive Ductal Carcinoma patient. My cancer was diagnosed after it had already spread to my bones/lungs/skin 3 1/2 yrs. ago. I never had radiation as early-stage do, in order to catch any residual cells that might have remained after surgery. I am, and have been on since day 1, an estrogen blocker due to E+ cancer which feeds off the estrogen in our bodies. They put early stage on the blockers to reduce the chance of a recurrence. I know most AI's (aromatase inhibitors/estrogen blockers) cause joint pains. For me it was about 7 months of aching here and there before it started to let up and I no longer notice them. Of course i have cancer in my bones so they ache separately at times. I can't recommend a txt to you but I believe it's worth trying to see if the side-effects are manageable. If not, there are other AI's that can be tried. Not every one will cause the same effects in everyone and some may be minor
On the Cancer Antigen test, that tests the cancer burden and your oncologist may have done it to have what we call a "baseline number". You are well within the normal range currently but they can watch, if you begin treatment, to see if the numbers go up or down to determine if a txt is working. I hope this helps. Glad to answer any other questions you might have.
Peggie

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?