Diagnosed with DCIS: How do I decide on treatment?

Posted by tctredwell1 @tctredwell1, Aug 23, 2022

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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@sequoia

@windyshores reading your post an OP, made me think, with the several/many AIs or estrogen inhibitors, do you think that one works better than others. Femara vs Anastrozole vs Letrazole etc? I took Anastrozole. I’ve not thought of this before 🤷‍♀️ The oncologist recommended Anastrozole snd I started it. Just curious.

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Femara is the brand name for letrozole. Docs seem to start with anastrazole. I have noticed some patients who have metastasis seem to take letrozole. I really don't know if one medication is better than another. Sorry! Exemestane is the third AI and is a little different.

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@tctredwell1

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?

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Your oncologist (or someone else like if you prefer the surgeon) should be the coordinator of your care and should explain it to you. Make an appointment to go over it all and bring a friend or family member with you to take notes.

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@nayade

Dear @tctredwell1 and @callalloo Thanks for keep in touch.
My beloved familiar refuse profilactic treatment: no RT, no Tamoxifen (because of osteoporosis-bones status aromatasa was not an option). After having a second conversation with the same oncologist knowing that my familiar refused RT...she explained us that for "cdis of low risk type" like this, the ussual "combo"(lumpectomy+RT/Tamoxifen) is not 100% the specific treatment... "You can face the low risk of having or not a future episode or try to minimize the probability of future episode with preventive combo or a part of it but having in consideration secondaries effects of the preventive treatment".
Food 4thought...
In this point we were in silence but she said OK I think we've all clear and we keep just under observation x 2 years which is OK, no problem. Some studies support the combo but in this case has a good pronostic by itself and with lumpectomy only. She said there was no illness and tumor 0 phase was removed completely.

By the way, they didn't look for her2 and centynel so they explained that was unnecessary in this step 0.

We keep calm and comfortable with the decision and continue with regular life.
On my side I spent many time studying statistics from hospitals and pubmed looking for [lumpectomy-only] and I think I'd take the same decision.
It was hard decisions so the external pressure to take preventive anyway.

If you have some point to comment feel free. Sorry for my english.
All the very best for u both.

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I am in a very similar situation. Wide excision biopsy removed the whole thing (4mm) that had shown up on my mammograph. I am 65 and not doing hormone blockers. I am not doing RA either- saving for future use if needed. I am a clinical researcher, and I think my decision is solid. As does my oncologist. But I feel like maybe I should do absolutely everything Available or else I’m tempting fate or in denial. It’s uncomfortable!

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@tctredwell1

Thank you windyshores! I saw an oncologist last week and was not comfortable with how he acted or what he said. I got another recommendation from a friend (she’s a nurse) for another oncologist at the same facility but was hesitant to call. But now after reading your post saying you got 4 opinions, I have all the courage I need to make that appointment for a second opinion!
Thank you so much!

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windyshores - Hi again. Just wanted you to know that I scheduled the appointment for new oncologist for Dec 20th. When I was asked if I would like to cancel the follow-up appointment with the other oncologist I said, “YES” !

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@tctredwell1

windyshores - Hi again. Just wanted you to know that I scheduled the appointment for new oncologist for Dec 20th. When I was asked if I would like to cancel the follow-up appointment with the other oncologist I said, “YES” !

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@tctredwell hug and good luck!

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I was recently diagnosed with DCIS stage 0 I had a mammogram and they saw it than,I had a ultrasound biopsy now going to have an MRI I’m so upset so they want to just remove part of my nipple and no radiation there’s absolutely no cancer in my cousins sisters or mother should they watch it or get a second opinion please help.

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@magalinebell1958

I was recently diagnosed with DCIS stage 0 I had a mammogram and they saw it than,I had a ultrasound biopsy now going to have an MRI I’m so upset so they want to just remove part of my nipple and no radiation there’s absolutely no cancer in my cousins sisters or mother should they watch it or get a second opinion please help.

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@magalinebell1958 I know how upsetting it is to have doctors tell you that you need to have surgery on your breast. Try not to Judge the plan yet, I would look to get a second opinion if possible before anything was done.
Cancer isn’t always hereditary, in fact many aren’t, most of my friends that have gotten cancer, did not have a family history. I am glad you are getting the MRI, as this can further diagnose or dispute diagnosis for you.
Since DCIS is a pre-cancer condition you have time to make he best decisions for yourself.
Are you comfortable with the doctor you have? Do you live in an area with access to a larger teaching hospital, or cancer center for a second opinion?

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@auntieoakley

@magalinebell1958 I know how upsetting it is to have doctors tell you that you need to have surgery on your breast. Try not to Judge the plan yet, I would look to get a second opinion if possible before anything was done.
Cancer isn’t always hereditary, in fact many aren’t, most of my friends that have gotten cancer, did not have a family history. I am glad you are getting the MRI, as this can further diagnose or dispute diagnosis for you.
Since DCIS is a pre-cancer condition you have time to make he best decisions for yourself.
Are you comfortable with the doctor you have? Do you live in an area with access to a larger teaching hospital, or cancer center for a second opinion?

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Thanks for the information I’m from a small town so I travel almost 2 hours to the cancer facility so I go on the 11 of January for my MRI.

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@magalinebell1958

Thanks for the information I’m from a small town so I travel almost 2 hours to the cancer facility so I go on the 11 of January for my MRI.

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I live in a rural area as well so I understand, it is about 1 1/2 hours for us. Our most awesome doctor is absolutely worth it. Please keep me posted about how you are doing.

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@magalinebell1958

I was recently diagnosed with DCIS stage 0 I had a mammogram and they saw it than,I had a ultrasound biopsy now going to have an MRI I’m so upset so they want to just remove part of my nipple and no radiation there’s absolutely no cancer in my cousins sisters or mother should they watch it or get a second opinion please help.

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Most definitely will

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