Joining the DCIS club!

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Sourisou
Sourisou Member Posts: 41
edited October 2017 in Just Diagnosed

Hello all!

First I must apologize for any mistakes since English isn't my first language. I've been lurking here for almost a year but never registered (somehow I thought I would jinx myself if I did, stupid I know!) But here I am, got the results back, on Friday the 13th no less!

So far it seems I'll be joining the DCIS club, as well as the very select Papillary Carcinoma club (encapsulated, so still considered DCIS) and the Hodgkin Lymphoma survivor with secondary malignancy club! I'm still waiting to chose between the Radiation or Mastectomy club; since I had rads already for Hodgkin (although a more limited field and not a full mantle) I might not be eligible. I must admit the mastectomy scares the hell out of me! So many clubs I don't want to belong to…

The results so far show grade 2 papillary DCIS with a small encapsulated papillary carcinoma that took my surgeon by surprise, since it seems quite rare, especially at my age (43). I'm glad that (for now) chemo seems off the table - I've danced with the Red Devil before and don't wish for an encore! I had lumpectomy with dirty margins so I'll need large re-excision. The area so far is 3.2 cm and Er/Pr +.

The events leading to the discovery are strange. I was pregnant last year (unfortunately ended up in miscarriage after 2 months) but the hormones made one of my fibroadenoma balloon-up to 4 cm! If that FA hadn't show up, I wouldn't have had my breast investigated and the cancer might have gone on to develop for a while longer (it only showed up on MRI). Somehow it gives me comfort to think the painful experience of miscarriage might have saved my life in the end.

Anyway, enough for now! Much thanks and love to all of you for helping me make more sense of all of this. I'm glad to belong to the BC.org club at least!

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  • 53nancy
    53nancy Member Posts: 497
    edited October 2017

    Sourisou, I am sorry to see you facing this experience. Just know you are in my thoughts and I wish you well as you continue your journey

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  • Sourisou
    Sourisou Member Posts: 41
    edited October 2017

    Thank you for your kind words, 53nancy. I'm sending you much love and strength your way. And it's nice to see a fellow Canadian around here :)

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  • obsolete
    obsolete Member Posts: 466
    edited September 2018

    Hi Souri, so very sorry that you have reason to join us! My goodness, you've had quite the experience, and your English is already perfect, so no worries. You need not worry about a possible potential mastectomy, as a had found the BMX surgery (bilateral mastectomy) easier and much less painful than my previous lumpectomies. My papillary tumor was also approximately 3cm and I also had DCIS and scattered multiple affected areas.

    I would strongly recommend that you have a MRI before you finalize your upcoming surgical plans. Some papillary lesions can sometimes present in multiples, especially in the peripheral areas (chest, etc.), but please keep in mind that papillary tumors smaller than 5mm sometimes are not visible on MRI scans. 2nd opinions on final pathology are sometimes recommended concerning papillary to ensure accuracy in identification of invasive components, if any. Best wishes are sent your way!

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  • tlfrank
    tlfrank Member Posts: 199
    edited October 2017

    Guess I'm joining the club too. Still trying to sort it all out. Consult with the radiation oncologist today but waiting on the results of genetic testing as 3 generations in a row have perished from colon cancer. I know, I know, not breast cancer, but it felt like the right thing to do before building a game plan. Decisions to be made - radiation and hormone blocking meds, or preventative mastectomy? Really fearful of making the wrong choices here.

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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2017

    Hi Tlfrank-

    We want to welcome you to our community! We know it's scary and confusing right now. And there are a lot of big decisions to make! Keep in mind, there are no wrong choices, only the choices that are right for you and your family and lifestyle. We hope reading through these forums offers a bit of insight, and makes you feel supported.

    The Mods

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  • Sourisou
    Sourisou Member Posts: 41
    edited October 2017

    Hi obsolete and tlfrank! I'm sorry to meet you guys in such circumstances...

    Thanks for the info, obsolete (and all the links you're posting in the Papillary thread, they are very useful!) The decision was made for me this morning: MX it is! According to the radio-onco, I just can't have rads again (besides I've had other health issues related to rads in the past, apart from the cancer, so I think rads and me are not a good match). I'm at peace with it right now. I believe I can have a nipple-sparing (and/or skin-sparing) MX so it softens the blow. I'll see my plastic surgeon tomorrow and get more infos. As for the MRI I was lucky to have one already - I've gone through mammo and ultrasound the past 6 months for various issues, but MRI was the only one to see the cancer, and the extend of it.

    tlfrank, I'm sorry you feel confused by those choices. I find myself lucky in a way that I'm forced into MX. It's such a hard and emotional decision otherwise. There is a thread in the DCIS forum I found very helpful, if you've not seen it yet -" Lumpectomy vs mastectomy - why did you choose your route" (it's on the first page but I can't post links yet it seems). You have great insight from members about their decisions, and some questions you can ask yourself to make the best choice for you. I hope it helps and I'm sending you all my support.

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  • tlfrank
    tlfrank Member Posts: 199
    edited October 2017

    Thanks for that Sourisou - I'll check it out. I'm finding lots of useful information in this forum, so happy to have found it. I also send my support your way. We'll both navigate through this and be just fine - chin up - one thing one day at a time. Seems like the only way.

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