• Triple negative recurrance

    Asked by Abendintheroad on Monday, February 11, 2019

    Triple negative recurrance

    I was diagnosed October 2017, had chemo, breast surgery, then radiation and was told I was cancer free in October 2018. I know that triple negative has a tendency to come back. I will be returning for mammograms every 6 months but does it ever come back someplace else in the body? I can't quit worrying about this. Any thoughts?

    7 Answers from the Community

    7 answers
    • ChicagoSandy's Avatar
      ChicagoSandy

      Actually, statistics show that after 5 yrs. w/o a recurrence, triple-negative is unlikely to ever recur: the survivor's chance of a recurrence is that of "general population risk:" no higher than the average woman her age's chance of getting breast cancer in the first place. OTOH, the reverse is true for the far less aggressive Luminal A (ER/PR+/HER2-, Grade 1 or 2): after 5 yrs. NED, the longer one survives, the higher the probability of an eventual recurrence. (So we end up paying the piper unless we die of something else first).

      8 days ago
    • JaneA's Avatar
      JaneA

      Fear is recurrence is a big fear for many of us. I am a Stage IV rectal cancer survivor, and I almost drove myself crazy the first year worrying about what my next scan would show.

      And then I realized that as long as I was being proactive to prevent recurrence - exercise, taking Vitamin D3, taking a daily aspirin - the things recommended by my oncologist - that there was nothing else I could do to prevent my cancer from coming back.

      I also have taken up watercolors - it is a good distraction when those dark thoughts come into my head.

      We didn't go through all of the treatment just to live our life a worried mess. Best wishes on finding peace of mind.

      7 days ago
    • fiddler's Avatar
      fiddler

      I was told that TNBC (which is what I had) almost never comes back in the same place, that it comes back elsewhere especially in the liver, lungs and brain. Whether that's true or not I haven't kept up with the research.

      7 days ago
    • fiddler's Avatar
      fiddler

      ChicagoSandy: thanks. I heard that from a breast cancer MD-researcher as well. Hearing things from more than one source helps.

      7 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      DIfferent types of BC, when they metastasize, typically do so first in different organs. Luminal A tends to go first to the bones or liver; TN goes to lungs & brain; HER2+ to lungs, brain or liver. But that doesn't mean that one's BC will metastasize, only that chances & eventual location tend to differ. (And with Luminal A, often the first evidence of mets appears at autopsy in women who lived to a ripe old age for decades after treatment, and died of something age-related like CVD).

      7 days ago
    • bruinjt's Avatar
      bruinjt

      As a TNBC survivor myself, I can say that you can also get a primary TNBC again. I had TNBC in 2009 on my right side. I had a lumpectomy, chemo, and radiation. No more cancer. Had regular mammograms, etc.

      Flash forward to 2018. Regular checkup mammo. They had me come back because they were concerned (this time left side). They did a mammo with closer films, but also an ultrasound. Thanks to the ultrasound tech, she found cancer (at a place in my breast in a different area than they were concerned about). Luckily, it was found early. But it turned out to be TNBC again, and it was a new primary cancer as opposed to a recurrence. I was BRCA 1 & 2 negative, so the genetic doctor had no clue why I got it again (and as a new primary vs. recurrence) - and also 9 years later. (As someone mentioned, with TNBC, if you go 2-3 years cancer free, your chances of it coming back are less than other types of breast cancer.)

      I didn't tell you this to scare you or worry you. You have to live your life. I was vegan initially in '09 after I finished treatment. Then I just decided to be pescatarian (fish and veggies no meat). After I was diagnosed the second time, I just threw up my hands and said there is no guarantee, so I'm an omnivore again. (Although I probably will go back to being pescatarian.)

      I think it might be helpful to learn meditation and mindfulness. Live each day and celebrate life. Join a support group if that's helpful.

      Trust me, I'm a worry wart. I still worry. But I'm trying really hard not to think about it. (Now as a 2x TNBC survivor, I'm running out of drugs if it comes back!) There are no guarantees in life. Just enjoy each day as it is a present. (One of the reasons why my Relay for Life team name is "Living for the Future."

      7 days ago
    • cards7up's Avatar
      cards7up

      No one should ever be told they're "cancer free" after only one year whether treatment is over or not. Most cancers go by 5 years without a recurrence. There is no sense worrying about it, just stay vigilant with your follow-up scans/appts. Worrying changes nothing.

      7 days ago

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