Possible new/ recurrence after DCIS 10yrs ! Anyone else?

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danix5
danix5 Member Posts: 755
edited January 2017 in DCIS (Ductal Carcinoma In Situ)

Hi all,

I have been out of this ordeal for almost ten years. Found a lump radiologist ordered biopsy to be done asap! I never had a rado dr order it was always go back to your surgeon.

Had bilateral mastectomies, uterus, cervix and both ovaries removed after two areas of grade 3 DCIS.

Anyone else ? I hope it is scar tissue but it is hard and next to sternum inbetween implant.

Thank you

Daniella

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Comments

  • goldie0827
    goldie0827 Member Posts: 6,595
    edited January 2017

    Doesn't matter what any of us have had or got after a certain number of years. Take a deep breath, and wait for the biopsy. Good luck, and we hope to hear that it is indeed just scar tissue and nothing serious. Hugs

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2017

    danix - Yes, I had a biopsy ordered by a radiologist. In fact, I signed paperwork agreeing that he would continue and do an ultrasound biopsy at that moment, since I was in there for an ultrasound anyway. I found him more knowledgeable than many of my other docs. Hope your results are benign.

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  • danix5
    danix5 Member Posts: 755
    edited January 2017

    Did you have bil=lateral mastectomy and reoccurence in 2 years after DCIS?

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2017

    danix - yes. I found a lump up by my collar bone 2 years after BMX. The docs labeled it 'local recurrence' and not mets. After treatment, I am NED again now.

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  • DCISinAZ
    DCISinAZ Member Posts: 161
    edited January 2017

    minus two - were you on tamoxifen? Glad to hear you are NED!

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2017

    Editing

    Oops - NO treatment the first time around because the BS got clear margins. My results were ER/PR negative, both with the DCIS and with the new (recurring) IDC, so no Tamox.

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  • danix5
    danix5 Member Posts: 755
    edited January 2017

    well I have been diagnosed with new lobular and ductal invasive cancer. All Drs are shocked since I did bilateral mastectomies and total hysterectomy. I am ER+ PR- and HER 2 +.... so this stinks and I am on to surgery, rads, herceptin, estrogen suppressor ... yeah a whole lot of fun. Never think you are safe from BC! I was lucky was their words... now they are shocked I have a new invasive cancer almost ten years out from "lucky DCIS

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  • AmusingSoprano
    AmusingSoprano Member Posts: 114
    edited January 2017

    I'm really sorry to read this, I was crossing my fingers for you that it was something benign. It also frightens me because my diagnosis was almost identical to yours.

    Wishing you much strength as you deal with all the treatment. Do they have to remove your implants?

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  • danix5
    danix5 Member Posts: 755
    edited January 2017

    No Dr has mentioned removing implants. I will update after surgery.

    Hang in there

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  • Annette47
    Annette47 Member Posts: 957
    edited January 2017

    So sorry to hear this. I had a friend who had a BMX for a small area of DCIS who developed ILC 8 years later, so it does happen, unfortunately. Hoping you sail through treatments and come out the other side smiling!


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  • GAMomma
    GAMomma Member Posts: 197
    edited January 2017

    wow I'm.so sorry to hear this,but appreciate you sharing. Being a me why it's always good to hear all possibilities for the future.

    Please keep us updated!

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  • Bluebirdgirl
    Bluebirdgirl Member Posts: 115
    edited January 2017

    Danix5, so sorry to hear this!! What a shock. I had a similar diagnosis and had BMX, feel very confident in my decision, and they tell you there is only 1 - 2% chance of recurrence. Well, if you are that one percent, statistics mean nothing!! Whether you are stage 0 or stage 3, you will always worry about it coming back. I still have a lesion on my liver that they found by accident after my BMX and it was suspicious for metastasis. I get my exchange surgery march 21 and then will have an MRI to look at this lesion again. I try not to think about it, as the oncologist said how could it be a metastasis, you had stage 0 DCIS. Well, stories like yours prove that shit happens and cancer doesnt always play by the rules! I wish you the best of luck and please keep,us updated.

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  • danix5
    danix5 Member Posts: 755
    edited January 2017

    I so hope your liver lesion is b9! We do live in fear but I had put it behind me and bam. That's sometimes how it goes! Do not let them talk down to you .... oh it's only DCIS! I am not the first or the last sadly to fall into a second cancer. This is a new primary and my DCIS WAS GRADE 3. So you think they would have followed me a little better. Nope! Took boobs and all female parts below and sent me on my way with the reassuring pat on the back " you were only DCIS" yes I am a little angry but grateful it seems it was caught early... but invasive sadly. I FOUND THIS MYSELF! So ladies always do breast checks on your foobs too! Ps lump was right at sternum and it hurt... so not typical of cancer. It was hard and immovable that is typical of cancer

    But it's not always text book!

    Hugs to you!

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  • Bluebirdgirl
    Bluebirdgirl Member Posts: 115
    edited January 2017

    Danix5, I agree that DCIS can be downplayed by the medical community. I switched oncologists because of this. First oneactually told me that DCIS is not cancer and I should not have had a BMX! Yet he prescribed tamoxifen and told me if I didn't take it I had a 15 - 20% risk of recurrence. What? See ya later, doc!!

    I sure hope this is the last time you have to deal with this, such a nightmare. Sending positive thoughts your way!!

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  • danix5
    danix5 Member Posts: 755
    edited January 2017

    I had DCIS GRADE3 multiple areas 2008 bilateral mx, opp/hyster 2008. Fast forward Jan 2017 IDC AND ILC HER2 positive ER+ PR-

    Had two areas removed yesterday,and two sentinel nodes,one known cancer other we are waiting for path

    Breast surgeon stated that there was quite a bit of residual tissue ! My heart had powerful cardiac arrhythmia which put me in distress during first mx. I almost died on the table spent four days in the heart ward than two months had cardiac ablation. Heart is fine now

    This appears to be possibly a reason so much was left behind, I clearly am very angry they should've ablated my heart area and then take me back to finish the mx to clear tissue properly but I guess they felt they had done a good job. Which clearly they did not.

    I have a call into surgeon this morning to ask whether possibly opening both breasts and making sure all the tissue is removed properly this time or do I just wait do the radiation anti-estrogen and Herceptin?

    Has anyone else had this type of complication?

    Still waiting on final path

    Thank you

    Daniella

    Dani DCIS, two areas rgt breast, grade 3 high comedo with necrosisDx 10/23/2007, DCIS, Right, 2cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+

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