Triple negative breast cancer

Lisaepstein
Lisaepstein Member Posts: 62 Member
edited May 28 in Breast Cancer #1
Are there any other women out there with Triple negative breast cancer?

Comments

  • GrammyKaren
    GrammyKaren Member Posts: 96
    #2
    yes Lisa
    There are many that I have met on this board.
    Good Luck and God Bless you.
    Karen
  • MAJW
    MAJW Member Posts: 2,510 Member
    #3
    GrammyKaren said:

    yes Lisa
    There are many that I have met on this board.
    Good Luck and God Bless you.
    Karen

    Yes..
    And if you look at the posts from a few days ago, there are more than quite a few of us...the other thread shares many of our stories...and quite a few of us have responded to your other posts...about your surgeon " getting it all wrong," from tumor size to your type of breast cancer..that is very confusing to a few of us...hard to understand, as how, as you described her, a top notch surgeon, how she got it so wrong....and then your oncologist said it didn't matter that it was triple negative? As I responded to another of your posts, triple negative is a very aggressive type of breast cancer..it does matter, big time! And size doesn't matter? I don't know of a single person with triple negative, regardless of tumor size or stage who hasn't had aggressive chemo...as I said in a previous post to you, that you need to speak to your oncologist again and even this top notch surgeon...I'd have to question her how she got it so wrong and I would seek a second opinion from another oncologist...
  • Lisaepstein
    Lisaepstein Member Posts: 62 Member
    #4
    MAJW said:

    Yes..
    And if you look at the posts from a few days ago, there are more than quite a few of us...the other thread shares many of our stories...and quite a few of us have responded to your other posts...about your surgeon " getting it all wrong," from tumor size to your type of breast cancer..that is very confusing to a few of us...hard to understand, as how, as you described her, a top notch surgeon, how she got it so wrong....and then your oncologist said it didn't matter that it was triple negative? As I responded to another of your posts, triple negative is a very aggressive type of breast cancer..it does matter, big time! And size doesn't matter? I don't know of a single person with triple negative, regardless of tumor size or stage who hasn't had aggressive chemo...as I said in a previous post to you, that you need to speak to your oncologist again and even this top notch surgeon...I'd have to question her how she got it so wrong and I would seek a second opinion from another oncologist...

    Size does matter it was
    Size does matter it was barely there, it had to be put on a glass slide to read it. I did speak with the oncologist again today and he said yes it is a dangerous cancer but because of the size I do not need chemo,he said it is gone now. I need to go by what he says, maybe their rumors were not as tiny!
  • jessiesmom1
    jessiesmom1 Member Posts: 915 Member
    #5
    Triple Negative Breast Cancer
    I was diagnosed with TNBC in Jan. 2010. No cancer of ANY size was ever found in my breast tissue. The lymph nodes in my right underarm were enlarged and it took a Tissue of Origin test to determine that those lymph nodes contained BREAST cancer cells. I had a complete axillary dissection, right mastectomy with tissue expander, port implantation, 4 rounds of A/C, and 12 rounds of Taxotere. I did not have ANY radiation. No hormone treatments since I am triple negative. I had reconstruction surgery in June 2011 which did not turn out so well so in Dec. 2011 I had revision-reconstruction surgery.

    There are quite a few of us with TNBC on this Board. I am sure if you have any particular question someone here has had an experience they could share with you. Ask away.

    IRENE
  • Rague
    Rague Member Posts: 3,653 Member
    #6
    When are you starting Arimidex for TNBC?
    When are you starting the Arimidex you said your Dr wants you on for your ER negative part of Triple Negative? Is he going to do Herceptin for HER2 negative also?

    So you are 'cured' - why are you doing rads or Arimidex if cured?

    You have never said what type - IBC, IDC, ILC, DCIS or LCIS? Makes a big difference in TX.

    Size doesn't matter. Come on - size does matter. Different TX and surgeries.
  • MAJW
    MAJW Member Posts: 2,510 Member
    #7
    Rague said:

    When are you starting Arimidex for TNBC?
    When are you starting the Arimidex you said your Dr wants you on for your ER negative part of Triple Negative? Is he going to do Herceptin for HER2 negative also?

    So you are 'cured' - why are you doing rads or Arimidex if cured?

    You have never said what type - IBC, IDC, ILC, DCIS or LCIS? Makes a big difference in TX.

    Size doesn't matter. Come on - size does matter. Different TX and surgeries.

    Jessiesmom is correct...
    Breast cancer isn't always located in the breast...good friend found her tiny tumor at the very top outer quadrent of her breast, closer to her armpit....mammo didn't even pick it up, which she had 3 weeks prior to finding it...at first she thought it was a pimple...but it was itchy....went to ob/gyn who ordered yet another mammo...didn't pick it up but her physician was suspicious...thankfully...biopsy confirmed breast cancer....how was your's found? What treatment did you receive for your uterine cancer? Was the uterus the primary?

    I have yet to hear anyone on this board say their oncologist told them they are "cured"....I'm still confused by your answers....
  • Lisaepstein
    Lisaepstein Member Posts: 62 Member
    #8
    MAJW said:

    Jessiesmom is correct...
    Breast cancer isn't always located in the breast...good friend found her tiny tumor at the very top outer quadrent of her breast, closer to her armpit....mammo didn't even pick it up, which she had 3 weeks prior to finding it...at first she thought it was a pimple...but it was itchy....went to ob/gyn who ordered yet another mammo...didn't pick it up but her physician was suspicious...thankfully...biopsy confirmed breast cancer....how was your's found? What treatment did you receive for your uterine cancer? Was the uterus the primary?

    I have yet to hear anyone on this board say their oncologist told them they are "cured"....I'm still confused by your answers....

    Sorry for using the word
    Sorry for using the word cured! My doctor said that, guess he wants me to know I will be ok. I did contact the cancer society today with a few questions. Actually I am feeling a little better after speaking to one of their oncologist nurses on call. Yes she did say the reason I am not having chemo is because my tumor is small 2.1 mm that's smaller than small she said. She read me a paragraph from her notes that says smaller than 6mm you are not given chemo, over 6mm they will consider it. Yes she did say that they give you anti estrogen medicine to prevent further cancers it's not for the one I already had. I was actually very lucky after I went to the doctor for heavy bleeding with clots I had a dc and they found the uterus cancer. Soon after I went for a mammogram and they found a new nodular. I was told it was so small it's takes a real good tech to find the one I had. So I guess yes I am in remission for now. I have been through a lot in the last couple of months and I am not done yet!
  • Lisaepstein
    Lisaepstein Member Posts: 62 Member
    #9
    Lisaepstein said:

    Sorry for using the word
    Sorry for using the word cured! My doctor said that, guess he wants me to know I will be ok. I did contact the cancer society today with a few questions. Actually I am feeling a little better after speaking to one of their oncologist nurses on call. Yes she did say the reason I am not having chemo is because my tumor is small 2.1 mm that's smaller than small she said. She read me a paragraph from her notes that says smaller than 6mm you are not given chemo, over 6mm they will consider it. Yes she did say that they give you anti estrogen medicine to prevent further cancers it's not for the one I already had. I was actually very lucky after I went to the doctor for heavy bleeding with clots I had a dc and they found the uterus cancer. Soon after I went for a mammogram and they found a new nodular. I was told it was so small it's takes a real good tech to find the one I had. So I guess yes I am in remission for now. I have been through a lot in the last couple of months and I am not done yet!

    The radiation and the anti
    The radiation and the anti estrogen pill are preventative treatments to prevent more from happening!
  • JennaM
    JennaM Member Posts: 12 Member
    #10

  • JennaM
    JennaM Member Posts: 12 Member
    #11

    So in my case it took the medical squad to put me through 5 (five) mammograms, before i finally said I would not leave the place if I don't have a referral for the lump in my left breast. They literally phoned for the guards, but it was a woman and felt compassion for me sitting on the flor and crying my eyes out. IN The Last 7 years i was misdiagnosed 3 times, and each time they would tell me I am fine and the biopsy was just telling quite different story. This time I got TNBC Grade 3 stage 1. The oncology doctor asked me what i would like to do about it, that was when i lost it. I started asking her what is her role here, shouldn't she be the one with options. I tolIed her I will come back. Sent the MRI and PET scan images to my friend in Sweden and she, whith out doubs said bilaterol mastectectomy, It is 16 months and I had no single day pain free!!!. I just got yet another MRI, don't event want to think about the results; i have some new lumps and that really scares me. Anybody with a good advice???

  • RocDocVic
    RocDocVic Member Posts: 135 Member
    #12
    https://csn.cancer.org/discussion/comment/1715542#Comment_1715542

    I don't know where you're at, but get a 2nd opinion. Go to a good Cancer Center or Hospital for this. Some, including MD Anderson, Mayo Clinic and Sloan Kettering will do it electronically. You just need to send them all medical information and images if they can't access it electronically. If they come up with really good treatment plan they can discuss with your local Oncologist and Surgeon and see if they'll implement it where you live. What options did your Oncologist have for you? Cytotoxic chemo drugs, targeted chemo drugs, surgery and/or radiation treatments?

  • JennaM
    JennaM Member Posts: 12 Member
    #13

    I live in Vancouver Canada, you don't get here a second opinions!!! Public medical system is slowly dying and nobody really cares about fixing it. We don't even have an access to for paid medicine!! All goes through public system! Too bad Ernie didn't check in details what Canadian Medical System suffers from!

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