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IDC, DCIS, and ??? in both breasts same time

Cannec Member Posts: 2

Struggled with where to make my first post as my diagnosis seems not to quite fit in any of these categories. I've not been able to find definitive answers out on the web. I'm 41, went in for my first mammogram, and then it all just snowballed from there. :(

Initially diagnosed with IDC, 8mm, on my left breast. Okay. Lumpectomy + radiation. I can do that. "Piece of cake," I said. BS sent me for an MRI (she must have suspected something) and it found additional areas of concern. The original 8 mm turned into a 9 cm stretch of multiple tumors (they didn't bother counting). Only the upper and lower portion of that stretch was biopsied -- the upper having already been diagnosed as IDC (the original 8mm tumor) and the lower being diagnosed as Ductal Carcinoma (in situ?) with comedo necrosis. Which I guess basically means an aggressive contained cancer that grew so fast it starved itself, thus the necrosis? I don't fully comprehend the progression of the cancer, or maybe it's all separate cancers, though I doubt it much matters at this point. We have no idea what's in the middle of that whole stretch, and again, at this point I doubt it matters. Yesterday the right breast biopsy came back positive as well (ductal carcinoma in situ, 4mm, no necrosis). I honestly thought the right would be fine, so it was a bit of a shock.

I guess I've decided on double mastectomy with some sort of reconstruction (PS consult next week) but am still struggling with that choice. I feel it's the "smart" choice given the change in my circumstances, the "only" choice. I'm having blood draws today, a portion of which will be sent off for genetic testing. Won't receive results until after surgery. I don't know that those results would affect my decision. If I come back BRCA+ (or positive for some other hereditary gene mutation) then I have reassurance that it's the right choice, but even if I come back negative I would still wonder.

I just wish there was more research to know for sure what my chances are, both of recurrance and living past 5, 10 years. Most of what I've been able to piece together is either old data or conflicting.


  • bren58
    bren58 Member Posts: 688
    edited June 2015

    Cannec, I am so sorry that you have diagnosed with BC and are starting this journey. I was 41 at the time of my first dx. DCIS in several areas of the right breast. That was 15 years ago when sentinel node biopsies were just starting to be used. I had dead cancer cells that showed up in one node. I decided to have the bilateral mastectomy and thus reduce my chances of a recurrence. I did not have chemo or radiation at the time as neither were recommended to me. Fast forward 12 years and I was dx'd with DCIS and IDC in the nodes and tissue under my right arm. They are not certain whether it was a recurrence or a new cancer. I was told it was very rare because my risk was 1-2% of a recurrence after having the mastectomy.

    While I was very scared about having the BMX, after the reconstruction I was happy with my choice and never regretted it. In your heart, I think you know what the right choice for you is. In the end you are the one that has to live with the choice that you make. I hope you will be at peace with whatever decision you choose.

    The ladies on these forums are awesome and will help you every step of the way!

  • Ridley
    Ridley Member Posts: 95
    edited June 2015

    Cannec -- I just wrote a long post and lost it so here is the abbreviated version (which is probably more useful anyway). 

    I had  what sounds to me as a similar diagnosis to you.  Multiple areas of invasive cancer on the left side as well as tons of DCIS -- I remember when the surgeon told me there were 10 areas of invasive cancer -- I was reeling.  I also had one small area of DCIS on the right side.

    I started off with a lumpectomy on lefty, but ended up with a bilat mast and diep reconstruction -- no regrets on either the bilat decision or the type of recon, but these tough decisions.  I was BRCA neg, but have lots of cancer in my family.

    I'm almost two years out and just about finished reconstruction.  I expect to be on tamoxifen or something similar for another 8 years.

    My onc told me my chances of recurrence are higher than someone with a single area of invasive cancer of the size of my largest (1.8 cm) area but not as high as if I added all my areas together (would be over 4 cm.)

    I hope all your news from here on in is good news.  These boards were a lifeline for me in those early days, so use them to ask any questions you are worried about.  Someone will help out.

    Take care!

  • youngturknyc
    youngturknyc Member Posts: 115
    edited June 2015


     I am sorry you found yourself here.  I was diagnosed at age 40 with IDC, ILC and DCIS in one breast (one 2.3cm IDC tumor, one 1.6cm IDC/ILC mixed tumor, and over 7cms of DCIS), and DCIS throughout multiple areas in the other breast (which, incidentally, was removed on a prophylactic basis, and nobody expected extensive DCIS).  DCIS is the non-invasive component of the diagnosis and will not dictate the treatment since you have an invasive component. The invasive component will dictate treatment. Take a deep breath.  You will feel much more in control as soon as you start treatment.

  • JenJenJen
    JenJenJen Member Posts: 3
    edited June 2015

    Sorry Cannec that you have to start this journey. I have a similar diagnosis to you. I was initially told that I have a 1.1cm IDC in my left breast and had a lumpectomy. The pathology report came back as IDC and DCIS areas. The margin status changed 4 times within a week span which caused such emotional turmoil for me. But eventually, they decided that I had positive margins. Now I have been through MRI to confirm that there is still DCIS in my left breast. Just this week, I went for a mammo and ultrasound and found that the DCIS is still there but there may be some IDC left at the edge of the lumpectomy bed. This is all after I've been through 2 cycles of chemo. It has been an emotional roller coaster for me because they seem to find something new every time a test is done. But I do agree with YoungTurkNY that you will feel more in control once you start treatment.

  • hyphencollins
    hyphencollins Member Posts: 14
    edited June 2015

    Hi Cannec, Sorry you are joining the board. Just wanted to chime in along with all the others with similar experiences to offer support and commiserate. I has two small invasive areas with extensive dcis in the left breast. Mastectomy was recommended given the extent and I ended up doing prophylactic mastectomy on the other side. Tough decision and living with TEs, while doable, sucks but I don't regret the decision. I'm a year out from diagnosis and the testing, waiting, and decisionmaking phase is really hard and I echo what others have said: it's easier once you have your plan. Much easier. Hang in there and best wishes.

  • Cannec
    Cannec Member Posts: 2
    edited June 2015

    Thanks for the kind words. I've spoken with several members of my team, as well as friends/family, and the consensus seems to be that this is the best route and that it'll all be okay. Things are calming down a bit for me now too -- we have a plan, only a few more appointments before the big day, and I'm back at work for several full days in a row now (hadn't done THAT in a while). Just plan on trying to cram a summer's worth of activities into the next 19 days so my kids have some sort of summer.

  • MaryAgatha
    MaryAgatha Member Posts: 6
    edited June 2015

    Cannec, I can totally relate. It's been a year since they found "a suspicious spot" in my left breast on a routine mammogram. It led to a biopsy and a dx of atypical ductal hyperplasia, which scared me a little bit but I didn't give it that much thought because I was so busy with everything else going on in my life. I thought, rather impatiently, "OK, a little lumpectomy and I'm moving on. I got this." But I have a friend who had a similar experience and she told me I should get a second opinion from a large breast center. I think she saved my life. I did seek a second opinion, an MRI, and blood test. Turns out I'm BRCA negative but there's a family history of BC, so in the end the genetic test didn't give me any satisfaction. I participated in a series of increasingly invasive diagnostic tests and with each step, my dx kept getting more serious: DCIS, DCIS with microinvasion, and then IDC stage 1. I asked my BS "Why is that they couldn't find all these things from the beginning? Why is it that they keep finding new cancerous spots every time they do a new diagnostic test?" She said it's because I have dense breasts and cancer can hide easily from mammograms and other imaging technology. I chose bilateral mastectomy even though cancer was found only in my left breast because I don't want to give cancer another chance to "hide" from mammograms. I will never regret my choice. Recovering from the surgery was one of the most painful and emotionally difficult experiences of my life, but it's been 2 weeks and I'm recovering well. My reconstructed breasts are looking better and better each day. I was even allowed to keep my nipples! :) The sad part: my nipples have no sensation at all (if I close my eyes, I cannot tell when my husband touches them) but the rest of my breasts actually have a lot of sensation which is a pleasant surprise. When my BS called me with the mastectomy path report, she said, "You have what we call a very busy breast." Turns out in addition to the tumors that precipitated the decision to have BMX, my left breast was harboring ADH, DCIS, microinvasions, IDC of 5 distinct foci with tumors ranging in sizes from 1.5 to 5mm. None of these were detectable with mammograms or ultrasounds or MRIs. Thankfully, because they're all small and because my nodes are clear, no chemo and no radiation for me. I do have to do 5 years of tamoxifen. You will find that the sentinel node biopsy is most critical in staging your cancer and mapping out future treatment options. I wish you clean nodes and all the best with your surgery!! The "surgery sisters" thread has been very informative and supportive for me.

  • hyphencollins
    hyphencollins Member Posts: 14
    edited June 2015

    Hey Cannec, Just wanted to check in to sew how you are doing!

  • My-Lan28
    My-Lan28 Member Posts: 6
    edited May 2021

    Hi Ladies

    I am new in this forum. I was diagnosed Breast Cancer on August, 2020 , I had cancer with 2 stages on both of my breast. My left breast had stage0 DCIS 5cm (grade 3) and beside it there were stage 1B IDC with multi focal tumors ( grade 2) of 1.7cm , 0.8cm, 0.3cm, 0.2cm, 0.2cm. My right breast again I had stage0 DCIS 0.8cm ( grade 2) and stage1A IDC 0.9cm (grade 2). No lymph nodes involved.

    I done all my treatments included of Bilateral Mastectomy, 4 chemos, 15 radiation and taking Tamoxifen. Right after my surgery my oncologist send my breast cancer sample to USA to get mamma print to see i am benefit from chemo. When the result come back with 19% risk of recurrence but I took chemos, radiation and Tamoxifen, it will bring down to 7% of risk of recurrence. I am very scare, I had 2 young kids 7 and 13. I am 46 this year. Anyone long term BC survivors whom had the same condition like my case , please contact me, give me some hope, support for this journey.

      • Member Posts: 1,434
        edited May 2021

        My-Lan, your posts are focusing on the combination of IDC and DCIS, but as I replied to you a few days ago, that's actually extremely common. And when you have both IDC and DCIS, other than surgically removing the DCIS, the diagnosis and treatment is based only on the IDC. So you can forget all about the DCIS.

        What's unusual about your diagnosis is that you had so many invasive tumors. And that you had bilateral cancers - a diagnosis in each breast. If you want to find others with a diagnosis like yours, I'd suggest that you start a thread in the IDC Forum entitled something like "Bilateral breast cancer with multiple tumors". Not sure how many people you will find with a similar diagnosis, but with that subject line for your post, you will be highlighting what's most relevant and unusual about your diagnosis. Hopefully then some people will see the thread and comment about their own experiences with similar diagnoses.