DCIS Stage 0

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Waterskz
Waterskz Member Posts: 5
edited February 2018 in Just Diagnosed

Hello. I hope you're all well. Just diagnosed this AM, and started doing some research which lead me to your site and discussion forums. While I've never participated in public discussion forums, I decided with the vast knowledge you all possess, having been where I am or far worse than where I am, I thought it might be helpful.

I realize my condition is very treatful and I hope to benefit from early detection and an excellent doctor, but I'm not sure how radiation will work, nor do I have any concept of how it will affect me. I have a demanding job that requires a lot of travel, so any information/guidance you guys may be able to send my way would be helpful. Just thinking ahead trying to somewhat plan this out, if possible. I recognize this may be a pipe dream, but I'm optimistic. :-)

Thanks for your help and I look forward to hearing from you.

Renae

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  • Rjmjt120
    Rjmjt120 Member Posts: 34
    edited February 2018

    Hi Renae!

    I was also just diagnosed (2/14) with DCIS. Do you have any other info (ER/PR+, grade?)? I have learned so much from these amazing woman. Radiation is freaking me out a bit. Haven't fully decided if I want to take that on or get a mastectomy and be done with it.

    My best to you and this journey we have to take!

    Jen

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  • tlfrank
    tlfrank Member Posts: 199
    edited February 2018

    Have you had your lumpectomy yet? My radiation treatments were done in 21 visits - 16 regular followed by 5 "boosts" that zero in on the tumor bed. Each dose is a little higher than the traditional treatment plan, but your overall exposure is less. Ask if your DCIS qualifies for the shorter treatment series, as I understand it not all cases do. Travelling would be problematic I think. Best wishes to you...

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  • Waterskz
    Waterskz Member Posts: 5
    edited February 2018

    Hi Jen,

    What is ER/PR? I am Stage 0 and mine is completely confined to the milk duct. I go to the surgeon tomorrow afternoon and will know more then. At this point, I am unsure how we will proceed other than they said I would have surgery and radiation, but they do not foresee me having to have chemo.

    Hoping mastectomy isnt in my future, but again, I will know more after I speak with doctor tomorrow.

    Are you in a more advanced stage? If the same stage as me, wad the masectomy discussed as a viable option? Have you already had your surgery?

    Given our diagnosis dates are so close, we will get through this together and kick its butt with glee. No worries. ;-)

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  • Waterskz
    Waterskz Member Posts: 5
    edited February 2018

    Hello,

    No, I go to the surgeon tomorrow afternoon and will schedule from there. What happens after radiation treatments, how do you feel?

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  • Waterskz
    Waterskz Member Posts: 5
    edited February 2018

    Hi TLFrank,

    No, I go to the surgeon tomorrow afternoon and will schedule from there. What happens after radiation treatments, how do you feel? Still learning treatment lingo...

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  • tlfrank
    tlfrank Member Posts: 199
    edited February 2018

    Waterskz - once you have your surgery the pathologist will determine if the cells were Estrogen/Progesteron positive or negative (ER/PR). Radiation starts a few weeks after the surgery. I got pretty badly burned, but not everyone does. I finished on 12/13 and it took about 2 weeks from then to finish peeling and begin to feel better. I did not experience too much fatigue, but some do. If your pathology comes back ER/PR+ then you'll likely be put on hormone blocking medication. In my case I am taking Tamoxifen and so fare the side effects haven't been too bad. I suggest you bring paper to the surgery consult and take lots of notes. You'll find tons of help and support as well as good information on this forum. But don't scare yourself by reading too much....everyone handles the treatements differently.

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  • MBPooch
    MBPooch Member Posts: 229
    edited February 2018

    My diagnosis was very similar to you all so thought I would share my experience with you. (Waterskz - I'm also in IL) I was also grade 3 ER/PR+ but because I opted for a double mastectomy I didn't know that information until after surgery. I'm a complete hypochondriac and knew from the get go that I would do a BMX. Even when my genetic testing came back negative I already had my mind made up. That also may be something you want to have done just so you can make a completely informed decision. I didn't want radiation but more importantly I knew I would always be looking over my shoulder. I also didn't want to go in for follow-ups and worry about every ache, pain or lump. I had implants due to little breast tissue so when I met with the oncologist and surgeon they said I wasn't a candidate for lumpectomy anyway. The left breast would be left looking like no breast at all once implant was out and lumpectomy took place. If you haven't had an MRI maybe that would aid in your decision. My original diagnosis was Pagets on the nipple and MRI was only thing that diagnosed the DCIS right behind it, both mammogram and ultrasound missed it, It also found 2 other masses on the healthy breast. I had those biopsied prior to BMX for piece of mind and knew they were benign but didn't want to worry about them becoming something else later down the road.

    When I met with the plastic surgeon I was a candidate for direct to implant and while I knew I may end up with expanders on the day of surgery I woke up with implants almost identical to the ones I had. I'm not sure how common my situation is, I feel very lucky that everything so far has been best case scenario. I was off pain meds in 4 days and was really only down and out for about a week and a half. Arm movement was compromised for about a month but I was feeling great by week 6. I don't need any follow up care except for doing my physical in 6 months with my breast surgeon rather than my primary.

    No matter which route you choose, you girls got this!

    Michelle

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  • Paco
    Paco Member Posts: 208
    edited February 2018

    Waterskz,

    I was diagnosed with stage 0 DCIS, Er/Pr+ grade 2 in late December. I had mammograms, stereotactic needle biopsy, and MRI in the diagnosis.

    I opted for lumpectomy and as a result, will have radiation and 5 years of Tamoxifen. I am 48, premenopausal and extremely active, and am looking forward to moving on past this diagnosis as soon as possible. Keep us posted and best of luck going forward!

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  • Rrobin0200
    Rrobin0200 Member Posts: 433
    edited February 2018

    diagnosed 3/6/17 stage 0 DCIS. I opted for a BMX. I knew right away that I didn't want radiation. I was 37 at the time, and I can honestly say that my BMX was not difficult to endure. I had direct implant reconstruction the same day. I have never regretted my decision. However, it is a personal choice. There's no right or wrong answer. But for me, I didn't want the anxiety of the "what ifs" in the future. Plus, I love the look of my new breasts! You have to do what's right for you and what your doc recommends. Best of luck and pls keep us posted.

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  • Rjmjt120
    Rjmjt120 Member Posts: 34
    edited February 2018

    Hi ladies!

    Anyone ever feel pain or a feeling of milk coming in with DCIS? Is this normal? I have no idea

    Thanks ~ Jen

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  • Rjmjt120
    Rjmjt120 Member Posts: 34
    edited February 2018

    Renae you will find that info out when you meet with your bs. It’s so much to take in make sure someone goes with you. At one point I was hearing blah blah blah (like Charlie Brown). Thankfully my husband was there to listen and ask questions. Let us know how that goes. Best of luck to you!

    Yes we will get through this together!!

    Jen

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