Newly diagnosed with DCIS and so scared

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  • Sitti
    Sitti Member Posts: 230
    edited September 2017

    Heartdesireslife, is good to hear from you. I know you are glad that the surgery is behind you. I'm glad you ended up getting a surgeon you have confidence in, that's so important. Try to rest up, hoping for a quick recovery for you. Keep us posted on how you are doing when you can.

  • HeartdesiresLife
    HeartdesiresLife Member Posts: 59
    edited September 2017

    Thank you Ladies!

    LAStar, your T-rex description kept me chuckling after I logged through my dinosaur knowledge to think about what the T-rex looks like. I don't naturally think about their little arms, I just remember their big teeth.

    MTwoman, I certainly took up your advice to binge watch. During commercial breaks I walked around the house. So I managed to get in a little, tiny bit to exercise too.

    Dear Sitti, thank you kindly for your prayers and well wishes!

    I got the drains removed on Wednesday and I had no idea what the internal parts of the drains looked like. I thought they were going to be like the tubing seen outside of the body but actually they were totally different. Removal of the drains was very easy, you just have to take a deep breath. Now I have to do the arm/shoulder exercises to regain the range of motion.

    I saw the medical oncologist also on Wednesday and as the microinvasion, even if very small 0.7mm, tested HER2+ the oncologist recommends as "extra insurance" 3 months of Taxol along with Herceptin and 9 more months of Herceptin. Because of the small size, pathologist cannot definitively say it was the microinvasion which tested positive and not the DCIS. My husband and I will be seeing another oncologist to seek a 2nd opinion and possibly even a 3rd opinion. I'm certainly not opposed to target/chemotherapy and I know one year of this is a drop in the bucket in comparison to what many others are doing but boy, this makes me nervous. Yet at the end of the day even with all the potential side effects of Taxol and Herceptin, that it will probably only minimally decrease the chance for metastasis, and that maybe the microinvasion is not even HER2+, the sheer thought of metastasis scares me even more. But there is that teeny voice within me which says to trust my body to heal itself. Maybe the 2nd opinion can help me settle my mind and heart some more.


  • MTwoman
    MTwoman Member Posts: 2,704
    edited September 2017

    Thanks for the update. So glad you've gotten your drains out! That's a big milestone and means that you really can start to do the stretches that make such a difference. Good for you for taking good care of yourself and resting, we know it can be hard.

    Makes perfect sense to seek a second (and maybe even a tie-breaking third) opinion, especially if they can't be certain about the specifics of the pathology sample. Hope the extra opinions start to help you make some tough treatment decisions.

    ((hugs))

  • HeartdesiresLife
    HeartdesiresLife Member Posts: 59
    edited October 2017

    I posted below on different topics but just in case my experience may help shed some light...

    8/25/17 bilateral mastectomy with sentinel node biopsy, no reconstruction

    pathology showed:

    left breast 7.1cm DCIS, high grade with 0.7mm microinvasion which was HER2+, hormone receptors negative

    right breast 1.4cm DCIS, high grade

    UCLA oncologist recommended Taxol/Herceptin as extra insurance

    City of Hope oncologist said no further treatment and no labs/scans for monitoring and only self exams/physician exams unless an issue arises due to risk/benefit of such a small invasion

    USC oncologist concurred with City of Hope's recommendation

    When USC oncologist was asked about taking Herceptin only, her response was for someone who was physically fragile and would have greater benefit of receiving something vs nothing, yes Herceptin only could be given. But Herceptin is not every effective without the synergistic effect of chemo. As for Perjeta, this medication is indicated for those with metastatic HER2+

    I forgot to ask if my case can be presented to a tumor board but I have reached a certain comfort level of not pursuing further treatment.

    Everything about breast cancer is scary but I think the most intimating is metastatic breast cancer. So on a positive note a friend sent a Wall Street article about a metastatic breast cancer patient being cancer free due to immunotherapy little while ago...since it was Wall Street article, it wouldn't let me read the whole article without being a subscriber but below link is from an open source with what I presume is the same article.

    https://www.msn.com/en-us/news/money/immunotherapy...

    Once again thank you for those with past experiences who have guided and continue to guide us newbies along.

  • HeartdesiresLife
    HeartdesiresLife Member Posts: 59
    edited October 2017

    Just trying to see how to put in my correct diagnosis without using the preset MyProfile options...

    _________________________________________________________________________

    diagnosed at the age of 46, 7/7/17 left 7.5cm DCIS high grade

    8/25/17 bilateral mastectomy with sentinel node biopsy

    left 7.1cm DCIS, high grade with 0.7mm microinvasion - hormone receptors negative, HER2+

    right 1.4cm DCIS, high grade

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