Symptomatic DCIS

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CK24
CK24 Member Posts: 33

I am CK, just diagnosed two days ago with DCIS. As I was symptomatic for the last month (nipple discharge), I fear the worst.

From what I have read, symptomatic DCIS often turns out to be more aggressive with greater possibility of being invasive and harder to treat as it is often receptor negative.

So we got the diagnosis Thursday, and will meet with a surgeon Monday. I am not sure how much is known from the biopsy, as the radiologist who gave us the news just said DCIS. The surgeon may know more, or we may have to wait until Monday.



Comments

  • LisaK12
    LisaK12 Member Posts: 107
    edited July 2018

    Hang in there. I was bleeding from the nipple for eight months until I was finally diagnosed with DCIS and mine ended up being stage 0, slow-growing, non-invasive, ER+, PR+. DCIS is not a death sentence, even if it is symptomatic...hope for the best!

  • CK24
    CK24 Member Posts: 33
    edited July 2018

    Oh, my goodness. There really may be hope then.

    Thank you so much for sharing that! Sincere thanks!

  • Justkeepmoving
    Justkeepmoving Member Posts: 106
    edited July 2018

    hello :)

    I ignored my lump (a nurse practitioner dismissed it and said it was nothing - so I ran with that) and it got big and it caused me pain and I eventually had nipple discharge. I talked myself into believing I had an infection. I had a sizable, painful lump with discharge.

    Anyway, a biopsy proved DCIS - it was intermediate to high grade hormone receptor negative. Luckily DCIS is not deadly. These cells don't invade the rest of the body. Many people who have DCIS discover small spots from a mammo and get away with lumpectomy with radiation. Usually there is no hurry and you have time to learn about this condition - speak with your breast surgeon.

    Good luck!

  • CK24
    CK24 Member Posts: 33
    edited July 2018

    Thank you, justkeepmoving. I guess we won’t know anything more, including whether or not the diagnosis is accurate,until the operation. I just have to accept that.

  • Justkeepmoving
    Justkeepmoving Member Posts: 106
    edited July 2018

    Did you have a biopsy? What exactly did the biopsy say? Are you seeing a breast surgeon? What operation? Lumpectomy? Are you having radiation? Did you have a more involved mammography? MRI?

    DCIS sometimes just sits there and does nothing. But sometimes it changes and then you have problems. I would look into what you have closely and ask questions. I don't want to scare you -- like I said DCIS is not deadly. But some are more "aggressive" and change. When was the last time (before this) that you had a mammogram?


  • CK24
    CK24 Member Posts: 33
    edited July 2018

    Hi, justkeepmoving. I am in too much emotional pain to respond. I just cannot right now

    Thanks for understanding.

  • TB90
    TB90 Member Posts: 992
    edited July 2018

    CK24: Nipple discharge could be due to other changes in the breast completely unrelated to your dcis. This means that your dcis may actually not be symptomatic. After my mx they noted lots of stuff. And I did have nipple discharge years earlier, but in the other breast. You can have a papiloma (hope that is close to correct) that causes discharge AND dcis. My mammogram that led to my dx, the technician thought she could feel a thickening. I told her that had always been there. Then when I was dx with dcis, I assumed she was correct. But in fact, the 'thickening" was no where near where the dcis was found. You are correct that being symptomatic can indicate more problematic dcis, however, it remains dcis and the vast majority never cause further problems. Your dx is extremely optimistic, but like you five years ago, I worried to the same extent. Now I am so relaxed about the whole ordeal and just wish I could bring some comfort to you at this time.

  • CK24
    CK24 Member Posts: 33
    edited July 2018

    Had the second opinion today. She was pretty optimistic until she got to the part about an enlarged lymph node.

    They did an ultrasound and a biopsy. They will know early next week if it is positive. If so, anywhere from stage 2-4.

  • Justkeepmoving
    Justkeepmoving Member Posts: 106
    edited July 2018

    Is this a second biopsy of the area of concern? Hopefully you have a lot going on including swollen lymph node due to normal reasons.

    Even though DCIS itself is not deadly it's still a pain in the butt. Due to my extensive DCIS (I had it in several parts of my breast including my nipple) and the fact that it was high grade the best choice for me was mastectomy. Life changing I guess but I'm on the other side of it now and looking forward to the future and putting this behind me.

    Thinking of you because I know this beginning part is stressful. Good luck - post back with the results

  • CK24
    CK24 Member Posts: 33
    edited July 2018

    No, it is a biopsy of the lymph nodes. The concern is that they may be cancerous. That changes the diagnosis.

    My daughter says I have an anxiety disorder. I have to say, I would not mind going into a coma right now. . .

  • Justkeepmoving
    Justkeepmoving Member Posts: 106
    edited July 2018

    Hello -- have you had your lymph node biopsy yet? Did you have an MRI of yor breasts? After my diagnosis of DCIS (from a biopsy) I had a MRI and that showed other areas of concern but also that most likely the lymph nodes were clear (and the final pathology confirmed all of this).

    Of course you're going to be anxious. I had literal panic attacks but it came out about other things (worry for my children having nothing to do with possible cancer) where I couldn't breathe. I know it was the stress of trying to decide my course of treatment that brought them on. Ok. I just had to deal with it but I think it's normal to be anxious.

  • CK24
    CK24 Member Posts: 33
    edited July 2018

    Thank you, justkeepmoving. No, we have not heard yet.

    I am visualizing a peaceful future. It is helping me relax.

    Yesterday I talked to a woman who had a near death experience 33 years ago. She was so comforting. She has no fear of death. She told me it is just Love in the hereafter.

    I really needed that.

  • herewegoagain59
    herewegoagain59 Member Posts: 13
    edited July 2018

    I had DCIS 3 yrs ago.Comedo type.stage 0.You think positive don't ever loose sight of that.It helps heal you.

  • CK24
    CK24 Member Posts: 33
    edited July 2018

    Thank you, herewegoagain59. :)

  • CK24
    CK24 Member Posts: 33
    edited July 2018

    Doctor called and said the enlarged lymph node biopsy from Friday was negative. So grateful to God.

    Of course we will not know the complete pathology until after the surgery. But so appreciative of this blessing today.

  • Justkeepmoving
    Justkeepmoving Member Posts: 106
    edited August 2018

    that is great news! Now you can focus on getting the DCIS out and hopefully that is all that is there! One day at a time..

  • CK24
    CK24 Member Posts: 33
    edited August 2018

    Justkeepmoving, that really would be a miracle, if that is all it is. Just getting the negative biopsy news yesterday was such a gift.

    One day at a time, just like you said

  • CK24
    CK24 Member Posts: 33
    edited August 2018

    Got the pathology report. No invasion, negative margins . . . But otherwise looked pretty ominous. Extensive DCIS, comedonecrosis, solid, papillary and cribiform. Nuclear grade 2. Barely estrogen positive from biopsies (10% and 15%). The oncologist still wants me to take tamoxifen

    The breast surgeon told me she would not have been surprised if there had been invasion. When I said I was glad to see it was grade 2 instead of 3, she said that was subjective and another pathologist might have called it a 3. Great.

    The next day the oncologist said maybe there was indeed invasion but the pathologist had just not seen it. Um, how am I supposed to trust the pathology report after hearing that. Realizing how he must have sounded, he tried to walk it back and say he had full confidence in the pathology department. Ok . . .

    I cry so much. My neighbor's daughter just relapsed Thursday after 7 years clear. Stage 4, to the spine and pelvis. My heart breaks for her and her mom. 😞

    Last night I was not hungry for dinner and my first thought was that it must be because of another cancer springing up. Plus they said my albumin was a little low on the last blood draw. It was fine before the surgery.

    I feel so hopeless. I pray fervently, but still feel a lot of sadness and sometimes despair. Sometimes I feel completely overwhelmed.

    I just feel so lost and clueless.



  • VegGal
    VegGal Member Posts: 507
    edited August 2018

    Have your slides sent somewhere for a pathology second opinion. 

  • CK24
    CK24 Member Posts: 33
    edited August 2018

    Thanks, VegGal. :)

    I met with the surgeon this morning and she cleared some things up and reassured me about the reliability of the pathology report. I felt so much better after talking to her.

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