Any Triple Positives Go from Stage 1 to Brain Mets?
Hello All,
I was diagnosed in late 2022 with Stage 1b IDC cancer in one breast and one axillary lymph node in that breast. I received 6 rounds of chemo, then 12 rounds of Kadcyla. I also underwent 30 rounds of radiation, a lumpectomy and am planning on a double mastectomy in a few months.
All of my Signatera blood monitoring has been negative including one last month. I realize that it does not monitor cancer in the brain.
I have been having some odd symptoms recently and because I am a worrier, I keep wondering if perhaps the cancer somehow spread to my brain while I was in treatment.
I have slight fever, head congestion and headache, as well as popping ears so went to ENT. He said sinusus are inflamed, ears look clear. They tested my hearing and it was slightly less on one side which they said could be from chemo. I've never had a baseline test before so not sure. I also had a brief ocular migraine last week and feel a little dizzy at times - that seems to be improving.
Lately, when I yawn, I have terrible muscle cramps in my neck and jaw and my jaw is sore (same side as radiation treatment).
Not sure if that's from chemotherapy or not or just TMJ.
I am terribly worried about brain mets and hoping it's something ordinary.
Anyone else have these symptoms or did you go from Stage 1 to the brain?
Any help is appreciated.
Thank you! 🙏
Comments
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Hi @juliegillesp,
We're so sorry you're here with these concerns. Have you talked to your oncologist about what you're experiencing? You might want to request a brain MRI to help determine what is (or isn't) going on.
Sending hugs!
—The Mods
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Hi julieguillesp,
As a triple positive, you had a ton of treatment, so it will take a while to feel normal. The first years after treatment, it is common to be hyperaware of body changes and body feelings, and worry about recurrence. Remember that, given your stage, and the treatment you received (including Kadcyla, which drastically reduces the chances of recurrence), the numbers are with you, in that your chances are excellent to never see the cancer again, even with lymph node involvement -I was in the same boat, but more advanced stage, and Kadcyla was not available then yet.
You are doing the right thing by being vigilant, and by following up with your doctors about any symptoms worrying you, especially if they linger for a while, both with the specialists (ENT in your case) and also with your MO, with whom I guess you are still following up regularly. Press the issues until you have things explained to your satisfaction, and trust your doctors -no one here is qualified to diagnose brain mets.
Take care,
LaughingGull
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Thank you LaughingGull…you made my day! Hugs to you.
I’m leaning more and more toward some bad TMJ. Too scared to get a brain MRI. Have a regular eye doctor appt next week…going to see if anything notable there.
I forgot to mention I’m BRCA 1 positive. I see you had an oopherectomy…me too.
Hope we can stay in touch. 😀0
