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DCIS Recurrence diagnosed today

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Here I go again - back on the research and reading train.

Just re-diagnosed with DCIS Grade 3 ER- this time (last time was ER+). Nurse navigator seemed confused because it was different. Are recurrences usually the same? (2.5 years since first DCIS) Stinks to get it again - but I'm thankful it's just DCIS, at least for now.

Since I had radiation last time, I'm guessing mastectomy is the probable treatment this time around?

Just looking for other experiences. I read a few posts here but hadn't seen a similar situation where it was ER+ and then ER-. Tried to research a little today and still just coming to terms with it coming back.

Along the way, I had a pulmonary embolism just diagnosed in December which had the OncDoc switch me from tamoxifen to arimidex.

]]Hot flashes are and have been about every 90 minutes for 2 years - have tried effexor, doubled that dose, reduced tamoxifen, tried magnesium, soy. I walk 3 miles every few days, drink tons of water, stretch regularly, keep active - tried going vegetarian for a while. I'm willing to try just about anything cause the hot flashes are way worse than the cancer treatment was/is. Most recently changed from effexor to gabapentin at night. It's helping me sleep through them at least but during waking hours, still every 90 minutes. Open to suggestions.

Thankful to find this forum and thank you in advance.

Comments

  • rah2464
    rah2464 Member Posts: 1,192
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    RHLady - I cannot speak the odds of getting a different DCIS diagnosis other than to say that all of us that have been diagnosed are at higher risk for a second diagnosis. Sorry you find yourself going through this again.

    As to the hot flashes can you try an AI to see if your body responds differently to that? I am on Tamoxifen and pretty miserable with the hot flashes as well, but I am not at that kind of frequency. I am going to be speaking to my MO about a switch at this point not sure if we can do that do to my bones. Have you tried acupuncture at all? That may help some, does for me. I can tell when I am about a week away from my appointment the hot flashes ramp up.

  • armom4
    armom4 Member Posts: 82
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    My MO prescribed Oxybutynin for hot flashes. It works great for me. I only have one or two a day now. It's a urinary incontinence drug that is effective for hot flashes.

  • LivinLife
    LivinLife Member Posts: 301
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    Hi rhlady! I just want to send support. This is everyone's nightmare, not that the initial diagnosis wasn't/isn't also a nightmare! I'm hoping this remains DCIS again for you. I hear your concern about that too.... Hopefully you get word soon so you at least know what you're dealing with. The limbo makes things so much more difficult. Please let us know....

  • lillyishere
    lillyishere Member Posts: 775
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    rhlady, in real life, I know very few women with BC but half of them had DCIS treated with lumpectomy+radiation and other cases mastectomy. They had recurrences within 2 years and stage IV in 5 years! Scary!

    I'm glad you got DCIS as recurrence.

    In my case, coffee and spicy food increase hot flashes.

  • parakeetsrule
    parakeetsrule Member Posts: 605
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    It's probably not technically a recurrence, but a new instance of DCIS.