• Abendintheroad's Avatar

    Abendintheroad asked a questionBreast Cancer

    Triple negative recurrance

    7 answers
    • 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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    Abendintheroad asked a questionBreast Cancer

    symptoms of lymphedema

    4 answers
    • ChiSandy's Avatar
      ChiSandy

      Wear sunscreen & bug spray on exposed skin outdoors; try to avoid cooking burns, paper cuts, hot baths & showers, saunas, steam rooms, pet scratches or bites, hot tubs (or keep that arm outside the tub) till you get confirmation of LE. Ask for an LE specialist or at least therapy referral. And get measured or measure yourself for compression and buy it for ASAP delivery—practice donning & doffing it before the trip. How long is the flight?

      4 months ago
    • Abendintheroad's Avatar
      Abendintheroad

      The flight is only three hours but I don't want to take any chances. I've been looking at videos and practicing the drainage massage just in case. The strangest thing is that my arm is not swollen at all - just my hand from the wrist down.

      4 months ago
    • ChiSandy's Avatar
      ChiSandy

      Then wear the compression (glove rather than gauntlet if you can get one—
      Lymphedivas can do a rush order; though my fingers are too short for their gloves, which come in only one length). Do the massage as late as possible before getting dressed to leave. Put rings, watch & bracelets on the other hand.

      4 months ago
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    Abendintheroad shared an experience

    Celebration (Finished treatment): I have finished treatment, my very straight hair came back curly (and I hope it stays that way) and at my first follow up my oncologist told me I was cancer free.