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What were your symtoms of DCIS

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  • minustwo
    minustwo Member Posts: 13,153
    edited October 2019
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    Mary - DCIS is definitely no longer considered breast cancer since it has not broken out (escaped) from the duct system. Both IDC & IBC definitely are. I agree, your report is confusing.

    One issue could be a breast full of DCIS but areas of invasive or inflamatory that just didn't show in the specific biopsy sites. BTW - from what I've read, your symptoms are for IBC (inflamatory) and NOT IDC (invasive). A significant difference. Good luck on the 8th and do let us know.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited October 2019
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    Mary, as MinusTwo mentioned, the issue could be the sampling of the needle biopsy. My stereotactic core needle biopsy found only ADH, a high risk condition. About 20% of the time, a preliminary diagnosis of ADH is upgraded to DCIS or invasive breast cancer once a larger sample is obtained. Because of this, most patients who are found to have ADH on a needle biopsy are sent to have an excisional (surgical) biopsy, just to be sure that nothing more serious than ADH is present. In my case, the excisional biopsy found a bit more ADH but also a lot of high grade DCIS and a tiny microinvasion of IDC. So I was one of the 20% who was upgraded.

    Missmom's diagnosis was upgraded too. She had symptoms similar to yours but her first biopsy found only DCIS. Her subsequent biopsies found IDC and a positive node. Therefore her IBC (which is her diagnosis although it's still somewhat questionable/uncertain) comes from the IDC, which can spread into the skin, and is unrelated to the DCIS that she also has.

    My guess is that at your surgical consult it will be suggested that you have another biopsy, possibly an excisional biopsy, to find out more about what's going on.

  • missmom79
    missmom79 Member Posts: 90
    edited October 2019
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    yes I had two core biopsy and then and third surgical biopsy. They kept finding high grade 3 DCIS with microcalcification. I had quite a bit trough the breast. In fact so much DCIS that if that was onky what I had been diagnosed with I’d still have to have the whole breast removed. But Mary I too went on August 12 because of redness and enlarged hair like follicles which may be orange peel skin. Thru told me from that day befor ebiopsy it was IBC. I mean I still have my questions wherther it IS or isn’t but it’s better they treat it as IBC just in case because it’s aggressive. The oncologist told me that IBC can wax and wane but literally mine hasn’t gotten any worse. Just the same for three months. I have chemo starting the 9th of October. So I’m confuse Mary as to why they think that your symptoms are from DCIS? I think they would have to do another biopsy to see if you have something more invasive like idc ect. With me they wanted to get to the root of it all. So they kept doing biopsy cuz they knew that was not the norm with DCIS. When you look up invasive ductal carcinoma that doesn’t have outside symtoms though.

  • Maryliz99
    Maryliz99 Member Posts: 5
    edited October 2019
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    Missmom, Minus Two and Beesie --thank you so much for your input. Missmom, see write up from MRI-targeted biopsy done on 9/19. The finding is DCIS, despite the symptoms leading me to doctor in the first place.

    MRI-targeted biopsy: showed the following:

    IMPRESSION: MRI BIOPSY MALIGNANT
    MRI biopsy of the 2.3 cm lesion in the right breast at 11 o'clock middle depth was successful with no apparent post procedure complications. Pathology indicates malignant ductal carcinoma in situ. Pathology results are concordant with imaging findings.Six specimens obtained.Titanium clip inserted into biopsy cavity.

    Yes, at first - three months ago when all of this started (that's how long it has taken to get through all this testing) the symptoms did appear to be IBC. Those symptoms are still there but itching and redness have subsided somewhat.

    Beesie, thank you for telling me about the possibility of having an excisional biopsy. All this time, since last Friday, I've been thinking the next step would be mastectomy. I will certainly ask about the excisional biopsy on 10/8.

    Minus Two, as you can see above, they are calling this malignant. To me, that means cancer. I have read that earlier, DCIS was not considered cancer, but now it is.

    And Missmom, if they aren't absolutely certain of what kind of cancer you have, how can the prescribe appropriate treatment, chemo or other?

    Again, thank you all for your help. I so appreciate it. God Bless.

  • missmom79
    missmom79 Member Posts: 90
    edited October 2019
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    Mary I thunk some doctors consider it cancer and some doctors don’t I am not sure. Sorry for all my misspellings up there. I think I type to fast lol. I mean I don’t want frighten woman either as beesie said however that is very interesting that you had those symptoms with DCIS. Ya never know after your surgery they may find a bit of idc. No they think I have IBC. The radiologist, the surgeon and the oncologist all think that. But the Oncologist says it can wax and wane. But from my understanding it progressively gets worse. I’ve heard if women with the rash speaking to their back and underneath their breasts. Mine had stayed absolutely the same but from the very first picture I took the day I noticed it compared to now looks less red. I had a pet scan that showed a lil envolvement in the breast and only one dominant node and like two borderline ones so it seems pretty localized. Well about the chemo they are using ac and all that other stuff. I’m wondering if that’s protocol for just idc alone. I’m gonna check it out and see what it says now about it. Keep us updated on your findings I am very curious

  • rrobin0200
    rrobin0200 Member Posts: 80
    edited October 2019
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    no symptoms. Caught only on a diagnostic mammogram, which was ordered due to a flipped implant.

  • Flo80
    Flo80 Member Posts: 212
    edited October 2019
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    Miss Mom I too had DCIS and invasive ductal carcinoma but my doctors are treating with IBC protocol just to be careful. I had little redness as well skin thickness on mri

  • missmom79
    missmom79 Member Posts: 90
    edited October 2019
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    yes i had redness, we’ll actually pinkness and still the same and start chemo in like 3 days. They insist that it’s inflammatory. I had skin thickness on mri and on mammogram. Did you have thickness on mammogram too? What about any enlarged hair follicles? And did yours get worse or stay the same? Also do they hav on your chart that you have inflammatory carcinoma of the breast? Sorry for so many questions! I really think IDC can cause all those symptoms of IBC

  • Flo80
    Flo80 Member Posts: 212
    edited October 2019
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    I agree MissMom I had skin thickness on MRI with little redness. They just took one punch biopsy which came negative. I had a tumour of 5.2 cm and my oncologist thinks that caused the symptoms. But they treated me with the same protocol as IBC. The redness will go away with chemo and the skin thickness too

  • missmom79
    missmom79 Member Posts: 90
    edited October 2019
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    flo mine was on mammo and mri. They did a surgical biopsy because my other two biopsy were not enough to give them the her2. They did like 4 inches of skin right in the area of redness and there was ZERO cancer. You'd seem to think that there would be something there in that area. I mean it was a pretty big hunk of skin. And it also noted on the path report that skin was remarkable....on pet scan it only showed on dominant node and two borderline nodes just like on the ultrasound a month an a half prior. That’s really not a lot. My breast did show up on pet also but because I have cancer in there doesn’t mean IBC I don’t think. So it seems pretty localized. I wouldn’t be surprised and hoping after surgery if they didn’t down grade me to stage 2. He’ll, i dunno even know if that is possible since I’m diagnosed stage 3




  • missmom79
    missmom79 Member Posts: 90
    edited October 2019
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    my idc they found was 2.5 cm and the DCIS was 60 mm...a lot of DCIS

  • Flo80
    Flo80 Member Posts: 212
    edited October 2019
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    I agree with you Miss mom. Mine on ultrasound was 2.8 cm and mri 5.2 cm including Dcis .I wish they do it for you. I am stage 3B IDC but treated with IBC protocol.

    I wish things work for you and will be praying for you

  • missmom79
    missmom79 Member Posts: 90
    edited October 2019
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    thank you flo. Quick question. Is 60 mm of DCIS equal to 6 cm of DCIS? So then with my 25 mm of idc then it is 2.5cm of idc and then total for both would be 8.5....so far anyways.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited October 2019
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    Missmom,

    Yes, 60mm of DCIS is the same as 6cm of DCIS. And 25mm of IDC is 2.5cm.

    While 6cm is a lot of DCIS, it's not that unusual for areas of DCIS to become quite large. Because DCIS cells are confined to the milk ducts, as the DCIS cells multiply an area of DCIS grows, all it can do is spread out within the ducts of the breast. Think of spaghetti (well, hollow spaghetti) and sauce in a bowl. The DCIS cells are fully contained within the hollow spaghetti, and while the DCIS move along and spread throughout those narrow tubes, they can't get out. Invasive cancer cells are in the open breast tissue (in my example, the sauce), so as invasive cancer cells multiply and spread, they tend to form a larger and larger mass in a single location. This is why areas of DCIS are often thin threads spread throughout the ducts of the breast, whereas IDC tends to be a more solid mass in one place.

    I had two areas of DCIS and in total more than 7cm.

    image



  • missmom79
    missmom79 Member Posts: 90
    edited October 2019
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    thank you beesie. You had no IDC

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited October 2019
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    I did have IDC.

    My diagnosis was DCIS-Mi, which is DCIS along with a microinvasion. The definition of a microinvasion is an IDC tumor that is 1mm in size or smaller. I had just one 1mm IDC tumor, or at least that's all that was found mixed in with all that DCIS. It's possible with such a large amount of DCIS (most of it high grade with necrosis)and given the tiny size of a microinvasion, that another microinvasion might have been missed, but regardless, it wouldn't change the diagnosis or prognosis.

    DCIS-Mi is a Stage I invasive cancer diagnosis.

  • Love4ever
    Love4ever Member Posts: 2
    edited October 2019
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    I didn't have any symptoms, but on my annual mammogram my left breast showed a 9mm smooth mass, so I was called in to have a diagnostic mammogram and ultrasound. The same mass was shown on the diagnostic mammogram but wasn't found on the ultrasound. The radiologist recommended an MRI of the breast and that's when a spot showed on my right breast. An MRI guided biopsy was recommended, so I had that and was diagnosed with DCIS grade 2. I just had my bilateral mastectomy September 30th.

  • moderators
    moderators Posts: 8,185
    edited October 2019
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    Hi there, Love4Ever! We want to welcome you to our community here at BCO. We're so sorry for what brings you here, but we're glad you've joined us, and hope you find this place to be a source of support. And we hope you're healing well from your surgery!

    The Mods

  • Love4ever
    Love4ever Member Posts: 2
    edited October 2019
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    Thank you

  • queerbychoice
    queerbychoice Member Posts: 2
    edited October 2019
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    I was diagnosed in January 2014 with right-breast DCIS, grade 3 with necrosis, and diagnosed in September 2019 with left-breast DCIS, grade 3 with necrosis. Both times, I couldn't even feel a lump. The first instance showed up as calcium deposits on a mammogram. The second was visible only on MRI scan.

  • ItsHandled444
    ItsHandled444 Member Posts: 41
    edited October 2019
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    Very frustrated, I have 3 sisiters and they all got their mammograms after my diagnosis. 2 sisters 59 & 60 years old came back fine but the yougest sister 54 had 3 new calcifications so they said let's look again in 6 months. Well it's been 6 months now she has 6 calcifications in the same area so they did a biopsy on Monday. She received a letter saying "Congratulations your biopsy came back normal see you next year!" 10 minutes later she gets a call and they say disregard that letter we need to run additional tests and within 1/2 hour they posted on her online portal that there was an addendum and she has 4mm low grade DCIS cribiform. Seriously they should always call and never let you find it online before you talk to the doctor especially on a Friday afternoon. Fortunately the doctor called her on Saturday and apologized for the error and will schedule her for consult, most likely lumpectomy and radiation. Should we trust them after this awful error? Thankful it all happened within an hour and not days later.

    I was also diagnosed with DCIS Dec 2018 but that changed to DCIS and IDC grade 2 after my lumpectomy but thankfully no lymph involvement so no chemo. Thinking we are both lucky for early detection, we had no family histoy so wonder if this changes as we are both post-menopausal? Neither of us had any symptoms, found on mammogram.

    Hugs!

  • institches
    institches Member Posts: 6
    edited October 2019
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    Mine did not show up as calcifications, but as an asymmetry

  • LisaK12
    LisaK12 Member Posts: 18
    edited October 2019
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    I had bleeding from the nipple. Saw primary care doctor who ordered mammogram and ultrasound -- both showed nothing. Continued bleeding from the nipple. Seventh month after previous mammogram, went to breast surgeon for consult. She ordered another mammogram and ultrasound. Both appeared clear, but surgeon told the ultrasound technician to keep looking because there is something going on. They finally found an area that "might be something" and did a punch biopsy and fine needle biopsy. Results came back DCIS. Went for lumpectomy: pathology showed DCIS and no clear margins, so a second lumpectomy was performed in an attempt to get clear margins. Pathology showed more DCIS and still no clear margins. Surgeon recommended mastectomy. I got genetic testing, which all came back negative, but my genetic counselor made clear that this just means I don't have any of the genes that they currently know are linked to cancer -- but more are being discovered all the time, so it's still possible I might have a gene that just hasn't been identified yet. (Maternal grandmother had BC.) I took my time and got a second opinion, and was recommended another option: a third excisional biopsy plus radiation. I decided instead to go with the mastectomy primarily due to my lack of confidence in imaging (and because I preferred to avoid weeks of radiation). I have dense breast tissue which makes it hard to see what else is in there. And I decided on bilateral -- for the same reason, but also in hopes of getting a relatively symmetrical outcome with reconstruction (the reconstruction was completed at the same time as the double mastectomy, which was a great option for me -- no tissue expanders, just immediate, direct-to-implant reconstruction). My surgeon supported this decision. It turned out to be the right call for me. Pathology from the double mastectomy showed DCIS was scattered throughout my left breast tissue, so I would never have gotten "clear margins" with a third lumpectomy, plus atypical ductal hyperplasia and LCIS were in the right "healthy" breast so there is a good chance I would have eventually needed a mastectomy on that breast as well.

    I think it is so important to keep asking questions and persist until you find answers that make sense to you and a course of action that you have confidence in. This forum is a great resource.

  • lifegoeson
    lifegoeson Member Posts: 57
    edited December 2019
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    I had a lump and I had bleeding from my nipple with my DCIS. It was medium grade, but was present pretty much throughout my entire breast. It was so diffuse that I could not have a lumpectomy

  • DaBahm
    DaBahm Member Posts: 12
    edited December 2019
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    I had the let down feeling and occasional pain in my sentinel nodes. I asked the MO if that was a thing, and he hadn't had anyone report it, but he said it was probably just my body adjusting to the cancer cells. The abnormal annual mammogram was the only other clue. My radiologist report said it was probably nothing due to the large number of microcalcifications but to have the large core stereotactic biopsy done to be safe. Turned out to be multicentric.