Just Diagnosed With DCIS - Questions/Concerns

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rabby55
rabby55 Member Posts: 9
edited May 2019 in Just Diagnosed

So I always felt it was just a matter of time to be diagnosed with BC, as my mom, aunt, cousin all had BC. Although I must add, my mom was diagnosed at 55 and lived a healthy, long life to 97 ! Always a positive thought. In March I went for my annual mammo. Got the dreaded "call back." Knew from the beginning it would not be good. Went for diagnostic. Radiologist met with me and advised I had suspicious calcifications that were not there last year. No lump detected; only calcifications. Did stereotactic biopsy; met with surgeon yesterday and he confirmed BC. Here is the diagnosis: DCIS, nuclear grade 2-3, cribriform, solid and micropapillary type with comedonecrosis and calcifications. No invasive carcinoma seen.

So my doc advised a lumpectomy followed by radiation. He was very positive, etc. Advised 98% cure rate, etc.

A lot to digest. Scary, frustrating, fear of the unknown etc. Is lumpectomy the right way to go? He did say I will have genetic testing since I have a strong family history. I've already decided if I have the BRCA gene, I will have a bilateral mastectomy w/reconstruction.

Next week it's a MRI of the breast, chest Xray, bloodwork, etc in preparation for surgery. Now I'll be consumed with thoughts of them finding something more sinister on the MRI or chest Xray. The fears never subside. Just trying to get a handle on it.

Glad I found this site - so informative and calming ! I would appreciate any and all responses - anything you can offer - hope, what to expect after lumpectomy / radiation, etc.

I am starting a list of questions for the doc when I see him next. So many things they tell you and you just can't think straight. I'm hoping my diagnosis doesn't indicate that my grade of DCIS has a higher rate of recurring. Some of the things I've read indicate it is. Thanks in advance for your responses/help ! Have a great day everyone.

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  • MBPooch
    MBPooch Member Posts: 229
    edited April 2019

    rabby55 - Sorry you find yourself here but there's tons of support on this site! Sounds like you've got all the right steps lined up to help you make an informed decision on treatment. During my MRI there were 2 additional areas of concern detected and I drove myself crazy with worry until I got the results of those biopsies, thankfully both were B9. Don't jump to conclusions even though it's easy to do until you have all the information. During this time I asked for some Xanax to help me sleep at night and keep me off google! This is the most stressful part of the journey, not having all the information. You will feel better once a plan is in place! I opted for BMX with Direct to Implant so can't offer you any advice with lumpectomy/radiation but I'm sure someone can help you answer that soon. Hang in there!

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  • Beesie
    Beesie Member Posts: 12,240
    edited April 2019

    rabby, while no diagnosis is good news, if it's going to happen, a diagnosis of DCIS is as good as it gets. Hopefully your final diagnosis, once the surgical pathology is in, remains Stage 0 DCIS.

    There are some differences in the diagnostics and treatment for DCIS vs. invasive cancer. You might want to check out the DCIS forum to ensure that the information you get here is specific to your situation.

    To get you started, this thread might be helpful: https://community.breastcancer.org/forum/68/topics/790992

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2019

    Hi rabby, and welcome to Breastcancer.org,

    We're so very sorry for the reasons that bring you here, but we're really glad you've found us. As you can already see, our Community is an awesome source of information, advice, and support -- we're all here for you!

    In addition to the helpful advice from the members above, you may find the following links from the main Breastcancer.org site helpful:

    Also, as Beesie mentioned, the DCIS forum may be a good place to ask questions specific to this diagnosis.

    We hope this helps and we look forward to hearing more from you soon. Please let us know how your tests go and the results, when you have them!

    --The Mods

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  • ItsHandled444
    ItsHandled444 Member Posts: 56
    edited April 2019

    Sorry to find you here with all of us but it's a great place to be for information and support. My biopsy showed DCIS so I assumed that was my diagnosis but once they did they lumpectomy it also showed IDC which was scary. I only tell you this because my surgeon was so sure it was only DCIS, wish they mentioned the diagnosis could change after the lumpectomy. I was totally shocked. The lumpectomy showed IDC and the margin was too close so did reincision and got clean margins and checked the lymph nodes which were clear, Whew! They were not going to check lymph nodes as they were confident it was only DCIS, I am so glad they did. My treatment plan was the same for DCIS as it was for IDC and I am now on 11 of 30 radiation treatments. Honestly considering what it is it has not been awful and I am thankful they found it early. I have no family history so figured I would start with baby steps and go with the lumpectomy and have no regrets.

    The waiting is the hardest part but once you know where you are and what you need to do you just move forward full steam ahead. Hang in there and try to stay away from the what ifs. Hugs!

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  • Lizcali63
    Lizcali63 Member Posts: 4
    edited May 2019

    The good news is no matter what, this isn’t life threatening. I had DCIS, grade 3, had a lumpectomy, rads 4 weeks and am now on 5mg tamoxifen daily - so no side effects except a couple of hot flashes here and there. Believe it or not the waiting is the worst part. Once your lumpectomy is over the rest is a easy breezy. Radiation was nothing, I had no side effects. Stayed well hydrated and worked straight through. Never tired. Like I said tamoxifen is nothing if you decide to go that route. Be gentle with yourself right now. I agree if you need something for sleep or anxiety take it! That’s what it’s for. You’re going to be fine. Many of these sisters have walked this path and have come out on the other side, better and stronger. You will too

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  • rabby55
    rabby55 Member Posts: 9
    edited May 2019

    Wow ! What a wonderful site. Thanks to all who responded so far. I feel so much better reading these posts. To know you are not alone - priceless. Knowledge is power!! I know I will be fine. I will keep you all posted. Testing next week - MRI/Breast and other pre-surgery tests. Then we will see what happens next.

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