Recently Diagnosed with Large Area DCIS, not sure what to do

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BWH5
BWH5 Member Posts: 56
edited January 2019 in Just Diagnosed

I was diagnosed 11/30/18 with DCIS in left breast. Two areas. Quite large. 6.9 x 4.4 x 6.1 cm. And .7 cm from nipple. Grade two. ER & PR positive.

My surgeon feels like a lumpectomy may not be an option due to the size but is willing to try it as is the plastic surgeon. Plastic surgeon plans on oncoplastic surgery and reduction of the right breast. With oncoplastic surgery I have been told if the margins are not clear I will have no choice but to go back for a masectomy.

I also was told I would do 16 rounds of radiaton after surgery.

I do not want a masectomy. And if I have to have one the surgeon has also said a nipple sparing surgery is most likely not an option.

I am a patient at the Stefanie Spielman Center at the James, OSU.

I was offered the chance of participating in the Comet study for DCIS. I could not decide what to do so I opted for the study and found out two days ago that I am in the Active Surveillance group. I would have a mammo every six months and could take meds such as tamoxifen if I want. I have an appointment with the medical oncologist in a couple of weeks to determine if I will do hormone therapy either in the Comet study or if I opt for surgery. I have not seen a medical oncologist yet.

I am worried about the Comet study since I have grade 2 or intermediate dcis. And because it is so large. I feel like if if I wait and the dcis grows larger I will have zero chance of a lumpectomy. Right now it is aalready a small chance.

I am also worried there is a higher chance of it becoming invasive since the size is so large. I don't want to end up having to go through chemotherapy.

Is anyone else participating in the Comet Study?

Has anyone else had such a large area of DCIS? If so what did you do? How did it go?

Has anyone else done the oncoplastic surgery immediately after the removal of the DCIS?

I have so many questions. I have five children and my husband of 23 years was just diagnosed 7/5/18 with CLL Leukemia after going into ER for a hernia. 2018 was not a good year for us.

Any advice, help is appreciated.

Thanks!

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Comments

  • Falconer
    Falconer Member Posts: 1,192
    edited January 2019

    Hi BWH, sorry you're here. It sounds like2018 was a difficult one for your family. I am not sure what to say about the study, but I'm sure your doctors can talk about it with you. had a large amount of DCIS as well. 5 cm. In a b Cup boob that meant MX for sure. I also had Idc (1 cm) close to the nipple. All in the left, nothing on the right. I recently found that there were a few other points of idc as well. My mom, on the other hand, had a lumpectomy 20+ years ago. She's still going strong.

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  • TB90
    TB90 Member Posts: 992
    edited January 2019

    I think your concerns about being in the surveillance half of the study are very valid. Please discuss these concerns thoroughly with your medical team. All the best

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  • BWH5
    BWH5 Member Posts: 56
    edited January 2019

    Falconer

    Thank you fur the reply.

    My BS will not say much about the study as she she does not want to sway my decision since they do not know what the outcome will be. My husband feels that she thinks the study is a good thing.

    So after surgery the pathologist found idc? I have a C/D cup depending on brand of bra. But the size and position at 9 to 10:00 is what makes the BS think a lumpectomy may not be possible

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  • BWH5
    BWH5 Member Posts: 56
    edited January 2019

    TB90

    Thanks for the reply.

    I have discussed my fears with them but they really do not want to sway my decision considering they do not know the outcomes.

    I am going to call my regular doctor and get his opinion. He has been my doctor since the 80s and he is very intertested in cancer research, etc. He raises a lot of money for cancer every year riding in the Peletonia.

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  • TB90
    TB90 Member Posts: 992
    edited January 2019

    BWH5: Bless your soul for being willing to participate in a study that could benefit all of us with DCIS. Ascertaining which DCIS will go one to progress to invasive is the million dollar question. But your health and your future is even more important. Please discuss with a medical person you trust, who has expertise and who is not invested in any way in this study. This is all about you.

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  • Cowboy-Up
    Cowboy-Up Member Posts: 211
    edited January 2019

    I don’t have a comment on the study but I am also a patient at the Spielman and they are awesome. You are in great hands.

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  • BWH5
    BWH5 Member Posts: 56
    edited January 2019

    TB90

    Thank you.

    I have four daughters and one son. If I can I would love to help everyone in this situation and my daughters if they ever find themselves in this predicament. I hope and pray they do not.

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  • BWH5
    BWH5 Member Posts: 56
    edited January 2019

    Cowboy- Up

    Thanks for the reply.

    I agree. They have been great.

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  • Leatherette
    Leatherette Member Posts: 448
    edited January 2019

    My DCIS was 6 cm. I had a mastectomy. I knew my breast would be not as it was if I had a lumpectomy, and was terrified at the prospect of not getting clear margins and them having to go back in one or more times to get them. I figured I would need some kind of reconstruction anyway. I did not have to have radiation because I did the mastectomy, which was an added plus.

    Tough decisions. I wish you the best as you make them.



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