question about being triple negative

heidijez
heidijez Member Posts: 441
edited March 2014 in Breast Cancer #1
forgive me if this is a stupid question, but it seems to me that everyone on this board knows so much about their cancer. i don't know if it's because i have inflammatory breast cancer that i was thrust into chemo so fast it made my head spin, but i don't feel informed. i did learn, after going for a second opinion after completing my first round of chemo (which did not work) that i am triple negative and stage IIIc. am currently undergoing ac chemo - much harder on me than the tc i previously had. anyway, on to my question. i know that i will have to have a mastectomy (left breast and lymph node involvement) followed by radiation. will that be it? i know that if i want reconstruction it will have to be after radiation - so not sure if that will happen, but will cross that bridge when i get to it. so many of you talk about tamoxifen and armidex and other drugs. who decides? or how is it decided who goes on these types of drugs?

Comments

  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    #2
    Heidi,
    I did not have inflammatory, triple negative, or a mastectomy -- so I can't answer much for you, but I CAN answer (whew, I thought I was gonna fail the test there for a minute! :-) your question about Tamoxifen/Arimidex.

    Tamoxifen, Arimidex, Femara, and Aromasin are commonly called "estrogen blockers," and reduce the possibility that any cancer cells in our bodies can feed off of any estrogen that our bodies produce. While there are exceptions, in general, these drugs are prescribed for women who have estrogen-positive breast cancer. Also, in general, Tamoxifen is for pre-menopausal women, the others are for post-menopausal women (again, this is just in general).

    So my guess is that you wouldn't be taking any of these drugs -- but definitely ask your doctor about it, as I know there are some gray areas when it comes to estrogen positive or negative status.

    Hope that helps,

    Traci
  • jessiesmom1
    jessiesmom1 Member Posts: 915 Member
    #3
    Triple Negative Breast Cancer
    I have also been diagnosed with triple negative breast cancer. You should look up the website for the Triple Negative Breast Cancer Foundation. It has a wealth of information. Most people you will meet do not have triple negative bc so their treatments will be different from ours. I had a right mastectomy - stage IIA. That was followed by four rounds of A/C and 12 rounds of Taxotere. I have had 8 of the 12 Taxotere rounds so far. Hormonal therapies such as tamoxifen are NOT a treatment protocol for us triple negatives. What I have read indicates that chemo is the primary treatment. Good luck. My thoughts are with you. It is always nice to know we are not alone in all this. I always believe it is best to be as informed as possible about your health so keep reading.
  • faith_trust_and_a_little_bit_of_chemotherapy
    faith_trust_and_a_little_bit_of_chemotherapy Member Posts: 319 Member
    #4
    jessiesmom1 said:

    Triple Negative Breast Cancer
    I have also been diagnosed with triple negative breast cancer. You should look up the website for the Triple Negative Breast Cancer Foundation. It has a wealth of information. Most people you will meet do not have triple negative bc so their treatments will be different from ours. I had a right mastectomy - stage IIA. That was followed by four rounds of A/C and 12 rounds of Taxotere. I have had 8 of the 12 Taxotere rounds so far. Hormonal therapies such as tamoxifen are NOT a treatment protocol for us triple negatives. What I have read indicates that chemo is the primary treatment. Good luck. My thoughts are with you. It is always nice to know we are not alone in all this. I always believe it is best to be as informed as possible about your health so keep reading.

    My triple negative journey
    Mammogram 1/21...definitively diagnosed 1/29...mastectomy with lymph node dissection 2/10...6 courses of TAC (taxotere, adriamycin and cyclophosphamide) chemo began 3/5...radiation to start any day now.

    Tamoxifen is not a treatment option for the 10-15% of us with this cancer subtype.

    Triple negative as a subtype has only recently been identified, that is to say, within the last 5 years. What the triple negative diagnosis means is that the three hormonal receptors that 'fuel' most breast cancers do not the fuel triple negative cancer. The frustration is that traditional treatments target those hormones, and for us with this particular cancer that's not an option.
  • bakerette
    bakerette Member Posts: 74
    #5
    faith_trust_and_a_little_bit_of_chemotherapy said:

    My triple negative journey
    Mammogram 1/21...definitively diagnosed 1/29...mastectomy with lymph node dissection 2/10...6 courses of TAC (taxotere, adriamycin and cyclophosphamide) chemo began 3/5...radiation to start any day now.

    Tamoxifen is not a treatment option for the 10-15% of us with this cancer subtype.

    Triple negative as a subtype has only recently been identified, that is to say, within the last 5 years. What the triple negative diagnosis means is that the three hormonal receptors that 'fuel' most breast cancers do not the fuel triple negative cancer. The frustration is that traditional treatments target those hormones, and for us with this particular cancer that's not an option.

    triple negative
    I haven't had my surgery yet. When I get my mastectomy, I will also get a senatinel node biopsy. If the nodes are not involved will I still need chemo? Do ya think? So far they believe it is just DCIS. Will know for sure When I wake up Friday after surgery. I also am a triple negative. I haven't seen an oncologist yet.
  • pinkkari09
    pinkkari09 Member Posts: 877
    #6
    Hi Heidi, I'm triple
    Hi Heidi, I'm triple negative stage IIIc also. I started chemo 9-03-09, took 4 rounds of A/C then 15 rounds of taxol, 2-11-10 I had a bilateral mastectomy (cancer on the left), all lymph nodes (they were all positive), both ovaries removed (because my BRCA had an unidentifiable significance), and immediate reconstruction. Shortly after I started 25 rounds of radiation. After radiation I had my expanders expanded and 12 days ago had my exchange done. Unfortunately us with triple negative cancer have no options for medications after the fact. The medications that women are talking about on here are for women Progesterone, Her2Nu, and Estrogen positive. Research is still being done for us. I pray all goes well, keep up the big fight and come here often. Also the website someone stated is very good for information as well. Hang tough sister!!
    ~Kari
  • Hubby
    Hubby Member Posts: 325
    #7
    TraciInLA said:

    Heidi,
    I did not have inflammatory, triple negative, or a mastectomy -- so I can't answer much for you, but I CAN answer (whew, I thought I was gonna fail the test there for a minute! :-) your question about Tamoxifen/Arimidex.

    Tamoxifen, Arimidex, Femara, and Aromasin are commonly called "estrogen blockers," and reduce the possibility that any cancer cells in our bodies can feed off of any estrogen that our bodies produce. While there are exceptions, in general, these drugs are prescribed for women who have estrogen-positive breast cancer. Also, in general, Tamoxifen is for pre-menopausal women, the others are for post-menopausal women (again, this is just in general).

    So my guess is that you wouldn't be taking any of these drugs -- but definitely ask your doctor about it, as I know there are some gray areas when it comes to estrogen positive or negative status.

    Hope that helps,

    Traci

    Gray Areas
    There are gray areas when it comes to ER/PR +/-, who knew. The staining methods they use and even the location within the tumor the specimen came from can give different +/- results. Donna went from + to - to + then back to -. But even after the final triple negative classification, two oncologists at two different cancer centers said they would put her on tamoxafin because it might be some small benefit.

    Bob
  • MonicaGray
    MonicaGray Member Posts: 1
    #8
    pinkkari09 said:

    Hi Heidi, I'm triple
    Hi Heidi, I'm triple negative stage IIIc also. I started chemo 9-03-09, took 4 rounds of A/C then 15 rounds of taxol, 2-11-10 I had a bilateral mastectomy (cancer on the left), all lymph nodes (they were all positive), both ovaries removed (because my BRCA had an unidentifiable significance), and immediate reconstruction. Shortly after I started 25 rounds of radiation. After radiation I had my expanders expanded and 12 days ago had my exchange done. Unfortunately us with triple negative cancer have no options for medications after the fact. The medications that women are talking about on here are for women Progesterone, Her2Nu, and Estrogen positive. Research is still being done for us. I pray all goes well, keep up the big fight and come here often. Also the website someone stated is very good for information as well. Hang tough sister!!
    ~Kari

    My Triple Negative Journey
    Hello, I was diagnosed triple negative in 02/2010 at 41. I had my first of four rounds of Cytoxan/Taxotere on March 18, 2010 and on round 19 of 33 RAD treatments. I am a stage I with clear lymph nodes. I am BRCA1 and BRCA2 Negative. I have never met anyone that was TNBC and everything that I read in regards to this horrible diagnosis scares me to death, it feels like I have been pushed off a cliff in a nightmare and I can't seem to wake up. It would be wonderful to just connect with someone or several that has the same subset.

    ~Monica
  • Aortus
    Aortus Member Posts: 967
    #9
    MonicaGray said:

    My Triple Negative Journey
    Hello, I was diagnosed triple negative in 02/2010 at 41. I had my first of four rounds of Cytoxan/Taxotere on March 18, 2010 and on round 19 of 33 RAD treatments. I am a stage I with clear lymph nodes. I am BRCA1 and BRCA2 Negative. I have never met anyone that was TNBC and everything that I read in regards to this horrible diagnosis scares me to death, it feels like I have been pushed off a cliff in a nightmare and I can't seem to wake up. It would be wonderful to just connect with someone or several that has the same subset.

    ~Monica

    You've come to the right place, Monica
    My beloved Moopy was diagnosed 11/2008 with stage IIIa TNBC. If you search this forum for "triple negative" you will find lots of posts from both of us - and lots of other TN survivors. In the meantime STOP GOOGLING PLEASE... and ask questions here instead! If you must google (and I can't blame you - I sure googled my brains out) try the Mayo Clinic and Johns Hopkins and Cancer.org sites.

    In some haste,
    Joe
  • mimivac
    mimivac Member Posts: 2,143 Member
    #10
    MonicaGray said:

    My Triple Negative Journey
    Hello, I was diagnosed triple negative in 02/2010 at 41. I had my first of four rounds of Cytoxan/Taxotere on March 18, 2010 and on round 19 of 33 RAD treatments. I am a stage I with clear lymph nodes. I am BRCA1 and BRCA2 Negative. I have never met anyone that was TNBC and everything that I read in regards to this horrible diagnosis scares me to death, it feels like I have been pushed off a cliff in a nightmare and I can't seem to wake up. It would be wonderful to just connect with someone or several that has the same subset.

    ~Monica

    Welcome, triple negatives
    The standard of care for triple negative breast cancer includes chemo and radiation, but not hormonals like Tamoxifen, Femara, and other Amaratose inhibitors. Since our cancer is not fueled by estrogen or progesterone, these drugs are not believed to provide a benefit. I don't consider triple negative to necessarily be a horrible diagnosis, anymore than estrogen positive breast cancer is. It's true we don't have the benefit of Tamoxifen and similar drugs, but our recurrence trajectory is also different and can be viewed favorably. Triple negatives have a higher rate of recurrence in the first few years after diagnosis, but after that the rates fall dramatically. It's like a bell curve. My oncologist looks at the 2-year mark as a good indicator of whether one will recurr. I've also heard 3-5 years. After 5 years, rates of recurrence for triple negatives are extremely low.

    I am also on Zometa to help prevent distant metastasis and I try to exercise and eat well. I am not perfect, but I feel good about my prognosis. Triple negative or not, being early stage still gives one an excellent prognosis.

    Mimi
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #11
    mimivac said:

    Welcome, triple negatives
    The standard of care for triple negative breast cancer includes chemo and radiation, but not hormonals like Tamoxifen, Femara, and other Amaratose inhibitors. Since our cancer is not fueled by estrogen or progesterone, these drugs are not believed to provide a benefit. I don't consider triple negative to necessarily be a horrible diagnosis, anymore than estrogen positive breast cancer is. It's true we don't have the benefit of Tamoxifen and similar drugs, but our recurrence trajectory is also different and can be viewed favorably. Triple negatives have a higher rate of recurrence in the first few years after diagnosis, but after that the rates fall dramatically. It's like a bell curve. My oncologist looks at the 2-year mark as a good indicator of whether one will recurr. I've also heard 3-5 years. After 5 years, rates of recurrence for triple negatives are extremely low.

    I am also on Zometa to help prevent distant metastasis and I try to exercise and eat well. I am not perfect, but I feel good about my prognosis. Triple negative or not, being early stage still gives one an excellent prognosis.

    Mimi

    Thank you Aortus and Mimi .. for detailing the triple negative
    experiences - first hand. We hear terms, or phases - told we have this or that -- and it is scary ..


    I am thrilled at the excellent prognosis .. and future we all have together, after fighting this beast - Breast Cancer.


    Vicki Sam

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