Diagnosed with DCIS: How do I decide on treatment?

Thank you Peggie for all the helpful information. I really appreciate it.
At this point I don’t know about radiation but I am open to the estrogen blockers - hopefully they’ll agree with me.
Take care (and I probably will be asking you more questions!). Theresa

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!).

At age 41, in 2003, I had LCIS, lobular carcinoma in situ, and ADH atypical ductal hyperplasia, stage 0, pre-cancer. Found on mammogram clustered calcifications. I had a lumpectomy and took tamoxifen for 5 years. Within, 2 years I began to have very very heavy clotted periods. I developed several benign looking ovarian cysts. Finally I had a hysterectomy and was able to stay on the tamoxifen. (After 5 years, my oncologist, switched it to Raloxifene for 7 years.)
The hysterectomy put me into early menopause and either that or the medications caused my osteoporosis at age 58. But it was worth being cancer free for 20 years. The cancer just came back this year. Still very early stage.

Other than that, my only side effect was 10 or 15 lbs that came right off when I finished taking the meds.

Any side effects from Tamixofen?

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?

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 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.

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?