Just diagnosed after 4 years NED

Options
etnasgrl
etnasgrl Member Posts: 650

Hello ladies!

My first go round with breast cancer was in 2015. I had IDC ER+/PR+/Her2- in the right breast. I just learned today that I have a new primary in the left breast. This time, ER-/PR-/Her2+
Yes, I am shell socked right now. I always knew the cancer could come back, but coming back as such a new beast has thrown me for a loop. Obviously, this means chemo and Herceptin. My tumor is small, only 8mm. My surgical oncologist is going to a lumpectomy/sentinel node biopsy in 2 weeks and then move me on to chemo/Herceptin. Once it is all over, I plan on doing a double mastectomy with reconstruction.

I am very nervous about the chemo and Herceptin as I didn't have either one the first time around. Any advice? Tips?

Comments

  • Ingerp
    Ingerp Member Posts: 2,624
    edited February 2020

    Check out the Triple Positive thread. You can ignore the Tamoxifen/AI stuff but everyone there has done chemo (often Taxol) and Herceptin. There’s also a Weekly Taxol thread if that’s what’s recommended.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited February 2020

    Why not do the chemo first since you're HER2+? That's sort of standard & shrinks the tumor, in some cases it disappears.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited February 2020

    If I recall correctly, etnasgrl's tumor is on the small side. I did neoadjuvant (before surgery) chemo because my lump was big and shrinking it would give me more surgical options. (It did disappear, though surgery did remove a tiny pocket of DCIS.) It sounds like etnasgrl is ready for a BMX at this point. Still, one benefit of neoadjuvant chemo is that it allows you to make sure that your tumor is responding to the chemo regimen in question. So, that might be a reason to do chemo first.

  • etnasgrl
    etnasgrl Member Posts: 650
    edited February 2020

    My tumor is small, 8mm. My medical oncologist told me that normally, chemo is given first, but because mine is so small, he thinks we should get it out first and then move forward a few days later with chemo. The surgical oncologist agreed, given that the tumor was so small. She felt that was the best way to go.

    At this point, I will have a lumpectomy with a sentinel node biopsy, just to get this thing OUT. Move forward with chemo/Herceptin and once done with that, move forward with a bilateral mastectomy

  • DogMomRunner
    DogMomRunner Member Posts: 616
    edited February 2020

    I had a small tumor and surgery was recommended first. If it had been closer to the 2cm then they would have recommended chemo first. But my BS was going with lumpectomy

  • Ingerp
    Ingerp Member Posts: 2,624
    edited February 2020

    Many (most?) of us do surgery first.

  • WC3
    WC3 Member Posts: 1,540
    edited February 2020

    etnasgrl:

    I'm really sorry you have to deal this again. I had TCHP, which is taxotere, carboplatin, herceptin, and perjeta. The taxotere and carboplatin are the chemotherapies and herceptin and perjeta are the targeted therapies. Everyone responds a little differently. Some people are laid up while others can get on with their day with some modifications. Herceptin and/or perjeta did not cause me much more than a runny nose but I was pretty laid up from the chemotherapy itself.

    I detailed all of my side effects here.

    https://community.breastcancer.org/forum/69/topics...

    Some things to know...

    You can cold cap try to keep your hair but it's not guaranteed to work. Some people also ice their hands and feet during infusions in an attempt to prevent neuropathy. I did not ice my hands or feet but only developed mild neuropathy which has largely resolved.

    Water will probably taste bad. I could only drink carbonated water that was lime flavored, or Pellegrino, and soda on occasion.

    Regular toothpaste might be problematic. I used Biotene toothpaste instead. A note, it is often kept in a slightly different location from the regular toothpaste.


  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited February 2020

    I iced on TCHP. I did not lose my nails, which is why I iced. I did get neuropathy and it hasn't resolved after 5+ years.

  • WC3
    WC3 Member Posts: 1,540
    edited February 2020

    MinusTwo:

    I haven't done any in depth research on it, but sometimes I wonder if icing is actually contributing to the neuropathy because most people I have heard from who developed bad neuropathy iced.

    I have Raynaud's so I just held a luke cold water bottle and took my shoes off and let the Raynaud's do it's thing.

    I developed some numbness in my toes and pins and needles in my fingers but that was pretty much the extent of my neuropathy. Maybe I just got lucky though.

Categories