Just DXed - Questions

Options
IrishEyes39
IrishEyes39 Member Posts: 47
edited August 2015 in DCIS (Ductal Carcinoma In Situ)

Following three biopsies on Tuesday (two dodgy masses, both left breast, and a benign in right breast), I received the following diagnosis today:

1. Ductal carcinoma in situ, intermediate grade with associated necrosis. The adjacent breast tissue also shows lobular carcinoma in situ. Prognostic markers ordered.

2. Fibroglandular breast tissue with intraductal papilloma with focal hyperplasia. No evidence of atypia. Adjacent breast tissue shows atypical lobular hyperplasia.

ER+ 99%

PR+ 99%

Brief discussion with doctor. He said four types of abnormalities (2 in each breast), but only one is cancer. Wants me to have an MRI and see a surgeon. Strong family history of breast cancer. He is worried with so much going on in the samples, there may be other things (such as invasive cancer) going on elsewhere in the breast, hence the MRI. I am 39.

Questions:

How common is it to find an invasive cancer after a dx of DCIS?

Any idea (I know they'd be a guess) if all the other abnormalities reduce the likelihood my breast can be saved? I'm not opposed to mastectomy, as a lumpectomy in my other breast 7 years ago left it a bit misshapen and very sensitive over the surgical site, but I want to be prepared.

Also, any questions I need to ask when I see the surgeon?

Thanks!

· Share on FacebookShare on Twitter

Comments

  • CAMommy
    CAMommy Member Posts: 437
    edited August 2015

    Hi, I'm so sorry you need to be here :(. But this is a great place for support. I am in the middle of my treatment for DCIS.

    To answer your question how often does invasive cancer exists with DCIS - it's common. I read that DCIS dx after biopsy can turn out to include IDC anywhere from 10-30% of the time. I was very worried, as I am sure anyone with DCIS is, that they would find IDC in my final pathology. I do not know much about LCIS or its treatment.

    After my final pathology my DCIS when from small (1.7cm) to large (6cm) and they found a bunch of other B9 "junk" in there but they did not recommend mastectomy at this time. I am doing radiation and tamoxifen.

    I have a family history too, but I know I'm BRCA negative. If I were BRCA positive they would have recommended bilateral mastectomy.


    Hope this helps

    · Share on FacebookShare on Twitter
  • Moderators
    Moderators Member Posts: 25,912
    edited August 2015

    Hi Irisheyes-

    We want to welcome you to our community here at BCO. We're so sorry you find yourself here, but we hope you find this to be a supportive place.

    To answer your first question, it is fairly common. Your doctor's concern might be heightened because of your family history. Have you spoken to anyone about genetic testing to see if you carry the BRCA mutation? That will also likely influence your decision to have a lumpectomy vs mastectomy. Typically, doctors will suggest a mastectomy if you have a strong family history, if the DCIS covers a large area, you have multifocal DCIS, or the margin of healthy tissue near the cancerous tissue is too small to allow for a cosmetically appealing outcome for a lumpectomy. You can read more about DCIS and your treatment options here.

    We know it's a lot to process, and hopefully you'll have more answers than questions after your meeting with the breast surgeon. We're thinking of you!

    The Mods

    · Share on FacebookShare on Twitter
  • IrishEyes39
    IrishEyes39 Member Posts: 47
    edited August 2015

    I've not yet spoken to anyone about genetic testing, but it is definitely on my list of questions.

    I know the core biopsy only takes some samples of the area. How can they tell the true size of the cancer? Is that done with MRI or what? My mammogram was clear, according to the radiologist on the day they scheduled my biopsies. My ultrasound showed MANY things (multiple solid masses, some suspected cysts, etc.), and they decided to biopsy the three most suspicious (2 in the cancer breast, 1 in the other).

    The mass that tested positive for DCIS is one that was there on my 2012 ultrasound, but it had grown and it was measured on that ultrasound to be about 1 cm.

    · Share on FacebookShare on Twitter
  • plumster1
    plumster1 Member Posts: 270
    edited August 2015
    Hi irisheyes
    Sorry you are here. Once I was dx, I did have an MRI to double check the size. Both the ultrasound and MRI correlated for me at 9mm. Then my final pathology was 1.2 cm.
    · Share on FacebookShare on Twitter
  • IrishEyes39
    IrishEyes39 Member Posts: 47
    edited August 2015

    Thanks for the replies.

    My head is spinning trying to sort through all the research on various treatments and such.

    I have an appointment with a surgeon on Friday. My MRI was originally scheduled for this past Thursday, but surgeon wanted to meet with me and review all my previous films and pathology reports and THEN schedule, so my appointment was canceled.

    I discovered my grandmother died of heart failure due to heart weakening from radiation following her mastectomy. That has made me terrified of radiation now, since it is in my left breast.

    Surgical options are confusing, and reconstruction options are even more confusing :/

    Is there any site that lists complication rates for various surgeries (lumpectomy vs mastectomy vs dbl mastectomy, different methods of reconstruction, etc.)?

    · Share on FacebookShare on Twitter
  • ballet12
    ballet12 Member Posts: 981
    edited August 2015

    Hi Irish Eyes, with regard to your grandmother's complications, there are two issues to be aware of. If your grandmother had radiation following a mastectomy, then it was radiation directly to the chest wall, as the breast was gone. If you had a lumpectomy, the radiation would be directed to the breast and not the chest wall. They do also have ways now to get the heart mostly or totally out of the field of the radiation with various techniques. In addition, my second major point is that radiation in this current day and age is much less toxic than it was back when your grandmother had it. I believe that the dosages are lower than they were then, and they find that the current dosages are just as effective as those done a number of years ago.

    There is a small chance that someone with DCIS might need radiation even with mastectomy, but only if there are not "clean" margins near the chest wall, and the treatment team feels that the radiation is important to reduce recurrence risk.

    By the way, your age "39" is a risk factor to take into consideration. Those under 40 have a higher risk of recurrence--so that's something to discuss with the surgeon, as well (mastectomy vs. lumpectomy, etc.)

    · Share on FacebookShare on Twitter
  • chocomousse
    chocomousse Member Posts: 157
    edited August 2015

    Hi Irisheyes,

    I was diagnosed with pure DCIS (no invasion) after a core needle biopsy in April. I opted for a unilateral mastectomy because there were other clusters and scattered calcifications throughout and I didn't want to be bothered with constant mammo's, biopsies or rads. My final pathology revealed invasive carcinoma along with multifocal DCIS so having the UMX turned out to be the right decision for me. Even with the IDC, my nodes were clear and margins were good so I need no further treatment except for possible hormone therapy. Radiation was just too risky for me.

    · Share on FacebookShare on Twitter

Categories