Herceptin questions

SueRelays
SueRelays Member Posts: 485
Hi All

New to the breast cancer board as I was just diagnosed. Stage 1, grade 3. Invasive ductal. Was told if I did a double mastectomy, I would be able to avoid chemo. Onc called today and said it's HER2 positive and wants to sit down and discuss further, but will probably recommend herceptin with chemo after surgery. Just wanted to know if any of you used herceptin ONLY w/o chemo?

I have been through the ringer the last 3 years. Have had 3 primary cancers. Started with anal in April 0f 08. Went through chemo and radiation. Through follow up scans a spot on my lungs grew and I ended up with a secondary ( non smoking) lung cancer. Had 1/5 of my lung removed same year. Feb of 09 I had 1/2 of my liver removed as the first cancer spread there.....now on another follow up scan I get this news! I am a very active, upbeat 52 year old that is loving living life right now. I feel great! I want to do whatever will affect me the least and still have a somewhat OK outlook. My biggest fear is that it comes back to the liver....so my thoughts, at this point, without hearing from all you experts and sitting down with my onc, that I may just choose surgery. He said herceptin is not used without chemo, but seems like I'm finding out otherwise????

Thanking all of you fellow fighters in advance!!!

Comments

  • Bella Luna
    Bella Luna Member Posts: 1,578 Member
    I had the same diagnosis as
    I had the same diagnosis as you( Stage 1, Grade 3-; ER+,PR+, HER2+). I had two lumpectomies and was scheduled for Taxotere, Carboplatin, and Herceptin. I did 6 rounds of the first two, followed by a year of Herceptin. In my case, Herceptin was very doable. I had minimal, if any, SE. I had to do chemo. I got through it and have moved on. I am now on Tamoxifen.

    Best of luck on your journey. Sorry to hear you are having to undergo treatment for another cancer. Hang in there, you found a GREAT site for support and information.
    Ines
  • sea60
    sea60 Member Posts: 2,613
    Sue, your "active" life
    and zeal are so positive! You look great. I had both the chemo along with Herceptin so not just the Herceptin alone. Just do your research is my suggestion and as you're doing now. I hope and pray all goes well and you are on the path to healing and recovery.

    Hugs,

    Sylvia
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    sea60 said:

    Sue, your "active" life
    and zeal are so positive! You look great. I had both the chemo along with Herceptin so not just the Herceptin alone. Just do your research is my suggestion and as you're doing now. I hope and pray all goes well and you are on the path to healing and recovery.

    Hugs,

    Sylvia

    Not HER-2 positive, but
    Most HER-2 positive women I've known have had both chemo and Herceptin. I do have a friend whose breast cancer was HER-2 and Estrogen receptor positive. I don't know the grade. She refused chemo because she'd had an anaphylactic response to anesthesia and was too afraid she'd have a reaction to the chemo. She was strongly advised to have chemo, including by her rad onc husband. This was also before Herceptin was available, so she didn't have that either. She had a lumpectomy and radiation and has been on Arimidex. It is now 7 1/2 years since dx and she's still dancin' with NED. The odds for recurrence were definitely not in her favor, yet she hasn't had one in 7 1/2 years. She stil wonders if she made the right decision and we'll never know.

    I do have something not negative (I won't say positive) to say about chemo for breast cancer, tho. The oncology nurse told me that my chemo (Taxotere and Cytoxin) was much "gentler" than another chemo would have been had I needed it for endometrial cancer. She said on a scale of 1-10, it was a 4 and chemo for endo cancer is an 8. You might ask for a comparison of the chemo cocktail that's being recommended for you with the previous chemo you've had. Oh heck, they'll probably just say "everyone is different".

    Sending lots of hugs and well wishes your way. Whatever you decide is your decision and we'll support you. Egads, THREE primary cancers? I've had 2 (at the same time). Enough already.

    Suzanne
  • SueRelays
    SueRelays Member Posts: 485

    Not HER-2 positive, but
    Most HER-2 positive women I've known have had both chemo and Herceptin. I do have a friend whose breast cancer was HER-2 and Estrogen receptor positive. I don't know the grade. She refused chemo because she'd had an anaphylactic response to anesthesia and was too afraid she'd have a reaction to the chemo. She was strongly advised to have chemo, including by her rad onc husband. This was also before Herceptin was available, so she didn't have that either. She had a lumpectomy and radiation and has been on Arimidex. It is now 7 1/2 years since dx and she's still dancin' with NED. The odds for recurrence were definitely not in her favor, yet she hasn't had one in 7 1/2 years. She stil wonders if she made the right decision and we'll never know.

    I do have something not negative (I won't say positive) to say about chemo for breast cancer, tho. The oncology nurse told me that my chemo (Taxotere and Cytoxin) was much "gentler" than another chemo would have been had I needed it for endometrial cancer. She said on a scale of 1-10, it was a 4 and chemo for endo cancer is an 8. You might ask for a comparison of the chemo cocktail that's being recommended for you with the previous chemo you've had. Oh heck, they'll probably just say "everyone is different".

    Sending lots of hugs and well wishes your way. Whatever you decide is your decision and we'll support you. Egads, THREE primary cancers? I've had 2 (at the same time). Enough already.

    Suzanne

    Thank you Ladies!!! I am
    Thank you Ladies!!! I am still researching options!!
    This board when going through my other cancers, has always been such a blessing to me!
    I'm sure I will be turning to all you experts many more times!!!