Diagnosed DCIS

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Tomichi1
Tomichi1 Member Posts: 32
edited February 2019 in Just Diagnosed

Hello, community. I was recently diagnosed with DCIS and had my lumpectomy. Interesting thing is that I’m away from home now for 2 months for work and this is allowing me to investigate treatments. My surgeon removed it all and I have no margins. She’s still recommending 5days/5-6wks radiation and drug therapy. At the moment I’m proceeding with a holistic approach (chiropractic, diet, spiritual healing, etc). I’d love to hear from others their experiences, routes they chose and new thoughts or approaches to this form of cancer. Thank you. Together we are strong.

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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2018

    Welcome, Tomichi! We're so sorry for what brings you here, but we're so glad you've joined our community. We hope you find this to be a supportive place!

    The Mods

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  • akmom
    akmom Member Posts: 272
    edited November 2018

    Hi Tomichi,

    I was diagnosed with DCIS (Grade 2) and had a lumpectomy followed by radiation (15 sessions over 3 weeks). Six years later DCIS showed up again, this time in both breasts. I had a double mastectomy and the breast with the previous history turned out to have a small amount of invasive cancer which was not evident on either the mammogram nor the core biopsies that were done prior to BMX. Now taking Letrozole, an aromatase inhibitor to stop the production of estrogen (I am post-menopausal).

    I wish you the very best as you gather the information you need to make a decision that is right for you.

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  • Rrobin0200
    Rrobin0200 Member Posts: 433
    edited November 2018

    Bilateral mastectomy here. As soon as I heard the name DCIS, I knew I wanted the breasts gone completely. Plus, I knew without a doubt that I didn’t want to subject my body to radiation. It’s an individual decision and there’s no right or wrong way. You have to do what’s best for you and your family. Best of luck to you. We are here for you!

    And btw, I have zero regrets on my decision. Plus, my reconstruction looks amazing!!

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  • Tomichi1
    Tomichi1 Member Posts: 32
    edited November 2018

    Omg, that’s so scary. Everything I’m being told is that if you have to get breast cancer DCIS is the one to get (compared to others). I don’t know what BMX is. I’m concerned that my doc is ordering so much radiation-which can CAUSE cancer. So much to consider. Thank you for sharing.

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  • akmom
    akmom Member Posts: 272
    edited November 2018

    BMX = Bilateral (both sides) mastectomy

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  • MBPooch
    MBPooch Member Posts: 229
    edited November 2018

    I chose BMX immediately. I wanted to up my odds of never having to worry about going through all this again. There's no right or wrong, I just knew I would second guess every little thing. Honestly, I feel like I still do. I freak out over every ache and pain! Maybe that will pass in time. Anyways, I was able to do direct to implant and the results truly were amazing, very similar to what I had. Best of luck to you, in what ever path you choose.

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  • Tomichi1
    Tomichi1 Member Posts: 32
    edited November 2018

    Thank you for sharing this with me. As I was away from home (and will be for 7 more weeks), I’ve bern pinballing with research and find myself overwhelmed. I never considered BMX and am shocked it’s now on my radar. It’s intersting to hear how you’re still fearful. I’m sorry you’re going through that. You’d think that would’ve given you piece of mind. I’m sending you healing energy.

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited November 2018

    I was driven by the numbers. When my RO told me that radiation would cut my probability of recurrence in half, it was an easy decision. It’s not difficult to go through other than having to go five days a week. The appointments are quick and most women only get minor skin reactions and a bit of fatigue. Really not bad at all.

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  • Tomichi1
    Tomichi1 Member Posts: 32
    edited November 2018

    Thank you for your response. I think my concern is the effects of radiation. My doc is recommending whole breast5days/5-6wks, which feels extreme. Also, should it come back, I’ve been reading that you can’t get radiation a second time to the same area (I need to double check that with my doc). Never thought I’d entertain a mastectomy. Scary.

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  • MBPooch
    MBPooch Member Posts: 229
    edited November 2018

    If you're entertaining BMX at all I feel like I should add that the recovery was surprisingly easy. I had worse case scenario in mind as far as pain, how long I would be dependent on others and when I would feel like myself. Direct to implant was great from a mental standpoint. I love to do yoga and I think that was a huge part of a quick recovery and regaining range of motion quickly. I had surgery the last week of November, hosted Xmas Eve at my house and went on a snowmobiling NYE trip up north. I did not go snowmobiling but my Dr's all said that was my call. Didn't want to go over an unexpected large bump! I would say by 6 weeks I was feeling pretty good. Most of the time I forget I even went through all this and it's life as usual! I do second guess aches and pains that I probably wouldn't do without this experience but I am super happy with my decision!

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  • Tomichi1
    Tomichi1 Member Posts: 32
    edited November 2018

    That’s very good to hear. I honesty never dreamed I consider this but the thought of choosing to not radiate/drugs, continue holistic treatments, and every 6 mos have to get screened, and the fear of “what if”. I dunno.

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  • coclico
    coclico Member Posts: 6
    edited November 2018

    Hi, I'm starting a new job 19 days after prophylactic BMX direct to implant. Is this do-able? Thanks for any tips!

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  • Tomichi1
    Tomichi1 Member Posts: 32
    edited November 2018

    Was recently informed about a Subcutaneous Mastectomy. Gathering more info. Which kind did you have, if I may ask? So much info out there (lots of it scary). Glad to hear yours went well.

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  • Salamandra
    Salamandra Member Posts: 1,444
    edited November 2018

    I had similar concerns about radiation.

    I asked about it and my doctors' office said that actually, you can go back and get radiation more than once. In the past, standard of practice has been lumpectomy+radiation for the first occurrence, mastectomy if it comes back. But the resident told me that they are now starting to do second lumpectomies and so far it seems promising. Apparently every part of our body has some lifetime limit of radiation, and the standard 50ish gray for breast cancer does not come near to approaching that limit. That made me feel a lot better.

    The radiation oncologist was very positive that with modern technology and positioning (I will be prone), there would be effectively zero radiation to my heart, lungs, and thyroid. That was my other main concern.

    The last piece is that they figured out that they can split up the radiation over 5/6 weeks or 3/4 weeks (where the last week is the 'boost'). A lot of places are doing 3/4 weeks now because it is better for patient compliance, convenience, etc, and shown to be just as effective and well tolerated. But the overall dose is the same.

    Overall, I felt a lot better about radiation after all my reading/research and meeting with the oncologist. I think it's worthwhile to at least get a second opinion before you go for a mastectomy if your primary motivation is avoiding radiation.

    Good luck!

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  • JosieO
    JosieO Member Posts: 314
    edited November 2018

    Tomichi1,

    Salamandra wrote a great note, and I can confirm what she said about radiation.

    I was initially diagnosed with IDC, but the surgeon also found and removed a large amount of DCIS, also with clean margins. I had a lumpectomy, followed by six weeks of radiation, and now am taking an aromatase inhibitor.

    I had an outstanding radiation oncologist, who explained in detail my treatment plan and gave me confidence. Other than some skin irritation at the end of my treatment, which he attended to, I felt good throughout the treatments and remain so today.

    Was very glad to keep my breast and move on with my life.

    Keep researching, ask questions, and have confidence in the members of your treatmentteam. Know that there are a number of caring and giving people here you can call upon. We’re all in this together.

    Best wishes to you.

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  • Tomichi1
    Tomichi1 Member Posts: 32
    edited November 2018

    Thank you for your comments. It was quite difficult getting my results being away from home and, interestingly enough, I was put in the position to “have to wait” for treatment as I’m an actress and couldn’t get radiation while working. I’ve had almost 6 weeks to research and when I get home I’ll be having a second opinion at Sloan Kettering. I really am seeing how individual each and every one of usis. I really don’t want to do radiation or drugs so I’m hoping that the team I meet at SK will support and guide me where I’ll feel most comfortable. Again, all of you are a wonder and a blessing.

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  • Tomichi1
    Tomichi1 Member Posts: 32
    edited January 2019

    Just back from Sloan Kettering. It appears, from their standpoint, that radius my way to go. I’m refusing Tamoxifen and they’re fine with that. Apparently, subconscious mastectomy is nothing I should do given that I’m Stage 0/Grade3. And they’d only do one breast-go figure. How many of you, with DCIS did Whole Breast Radiation vs Partial Radiation? if I choose the holistic route it’s a 16%/10 yr recurrence possibility.

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  • charlie1966
    charlie1966 Member Posts: 9
    edited February 2019

    Rrobin0200 - I am thinking of doing a mastectomy, over a lumpectomy I share the same feelings that I want it gone! I have many questions do your breasts look normal? I have read some reviews that you don't have nipples any more, there are draining tubes....not sure what to expect. Any information you can provide? TIA

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  • MBPooch
    MBPooch Member Posts: 229
    edited February 2019

    charlie1966 - It's a very personal choice but I haven't regretted my BMX for a second. There are people who can do a nipple sparing mastectomy but because I had Pagets of the nipple, my nipples had to go. I was able to go direct to implant meaning I got my silicone implants the same day as my mastectomy eliminating the need for expanders and a second surgery. It was also encouraging/motivating to wake up with breasts that were similar to what I had. I had implants prior to my diagnosis so it was an easy decision for me. My new implants look great and no one would ever have any idea. It's a little eerie for me how easy the process actually was. Sometimes I feel like I'm waiting for something else to happen but so far so good. Yes, there are drains but I only had those for 10 drains and I didn't have any issues with that.

    Good luck with your decision, go with your gut and what you feel comfortable with!

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  • charlie1966
    charlie1966 Member Posts: 9
    edited February 2019

    MBPooch thank you for your reply

    Best wishes to you

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

    Welcome, charlie1966! We're so sorry you find yourself here, but hope you find support and encouragement within our community. Like MBPooch said, it's a very personal decision, but many of our members are very happy with their decision! It'll help to read through some of the posts here, on the surgical and reconstruction forums, to get an idea of what sorts of outcomes you can expect. It really depends on the person and their specific diagnosis and surgical possibilities, but BMX and reconstruction techniques have come a long way! Best of luck on your decision, and we're here for you no matter what you choose.

    The Mods

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