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Podcast: Hope After a Triple-Negative Diagnosis

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Comments

  • kathseward
    kathseward Member Posts: 380
    edited July 2016

    Hi Sylvia

    I will do as soon as chemo starts. The lesion has been removed with a wide excision lumpectomy (partial mastectomy) 2 weeks ago and chemo starts on the 4th. The tumour itself was a 10mm grade 11 with surrounding DCIS of making the whole thing 20 mm. Nottigham grade 2 (7of9) and a KI-67 of 10 % . It was oestrogen negative progesterone negative and HER2 -ve . 2 nodes were taken with sentinel biopsy and both were negative. MRI of chest and abdo clear CT of liver and abdo clear. Still very confused

    cheers


    kath

  • Redporchlady
    Redporchlady Member Posts: 15
    edited July 2016

    I had A/C for 4 rounds then I was to do 12 rounds weekly of Taxol. ONC decided to add Carbo every 3 weeks due to studies showing it increased my chances of getting a PCR. It worked as I had surgery afterwards and no sign of disease in my breast and they removed all my lymph nodes and there were 5 that had the cancer but the chemo had killed it! I had to take Nupogen shots as the Carbo really bottomed out my white blood counts. I will be two years in September since dx. Everyday is a blessing

  • hasnade
    hasnade Member Posts: 2
    edited August 2016
    • I'm 42 years old was diagnosed in 2006 with stage 3 grade 3 breast cancer. I have the BRCA gene and had a DIEP mascetomy in 2010. In May this year I found out I was pregnant not any part of my plans but it has happened naturally we are very happy...however in May my CA 125 blood test for ovarian cancer was elevated. Since then I have had an abdominal and pelvic scan which showed no abnormalities which is promising but the blood test is still raised. Still being investigated for ovarian cancer..currently 12 weeks pregnant. Has anyone had similar experience I'm looking for support and guidance..Smile I have already spoken with my doctor and have a suggested plan for delivery. Thanks in advance.
  • adoxa2
    adoxa2 Member Posts: 1
    edited August 2016

    newly diagnosed, still in shock. TN-Triple Negative, Stage 2.

    All dizzy, this is after I got the All OK after a Mammogram, an UltraSound and a Needle Biopsy, but lump worried me enough to get a second opinion and the above is what I got. Now thinking...is this near the end?

  • vlh
    vlh Member Posts: 773
    edited September 2016

    Adoxa2, I'm sorry to hear about the diagnosis, but please know that Stage II is considered EARLY stage breast cancer.

    Just to be sure, is it stage 2 or grade 2? Although the stage can be estimated based on preliminary information (biopsy results and ultrasound), you wouldn't typically get a formal stage until your lymph nodes have been checked, most often in conjunction with surgery. Stage is based on the size of the tumor, whether there is lymph node involvement and whether there is evidence that the cancer has traveled beyond the breast. Grade, on the other hand, can be assessed based on looking at your biopsy tissue, and is a scale of 1 to 3 with 3 being more aggressive. I know it's scary, but I suggest getting a copy of your pathology report so you can develop a better understanding of your situation when the shock wears off a bit.

    Do you have an appointment with a breast surgeon yet (sometimes abbreviated as BS on the forum)? S/he should be able to go over your pathology report with you and explain the significance of the various numbers as well as discuss what surgical options might be appropriate. You'll also want to see a Medical Oncologist (MO) if chemotherapy is deemed appropriate. It's all quite overwhelming when you're still reeling from the diagnosis so have a family member or trusted friend accompany you if possible so you have a second set of ears. The American Cancer Society is a wonderful resource so don't hesitate to call them. This forum will be incredibly helpful as well.

  • Michelled2422
    Michelled2422 Member Posts: 3
    edited December 2016

    My only similarity was the mammogram / ultrasound sound not catching the cancer in Oct 2015 and I was getting them every 6 months. I had a swelled left breast and diagnosed in April 2016. I did chemo and responded well. I decided against radiation for me. Your lymph nodes are you sewer system and I am doing after chemo care so it felt redundant.

  • vlh
    vlh Member Posts: 773
    edited December 2016

    Could you speak more to declining radiation, Michelle? What kind of chemo aftercare? I've had numerous challenges in my treatment to date and studies suggest that radiation for my diagnosis can reduce the chances of a local recurrence, but don't improve overall survival so I'm torn given the risks (which I think ROs tend to gloss over).

    Thanks, Lyn

  • scoobydoo
    scoobydoo Member Posts: 20
    edited February 2017

    Just wanted to post a follow-up. Eight years since diagnosis and still NED!!!! Ladies this is NOT a death sentence!

  • aterry
    aterry Member Posts: 142
    edited March 2017

    ScoobyDoo, Thanks for checking back in and sharing the good news. Having triple negative still scares me (not that cancer isn't scary in ALL forms). I keep wondering whether the research will move fast enough to help us TNC folks.

  • vlh
    vlh Member Posts: 773
    edited March 2017

    Fabulous, Scooby Doo!

    Lyn

  • donnadio
    donnadio Member Posts: 674
    edited March 2017

    Yes! Being triple negative is a challenge and do hope the research can go to good results soon! I am 8 years clear and hope that this gives hope to others here!!

    Hugs,

    Donna

  • vlh
    vlh Member Posts: 773
    edited March 2017

    Very encouraging to hear, Donna!

    Lyn

  • gmmiph
    gmmiph Member Posts: 662
    edited March 2017

    A ray of hope for us TNs.

    Thanks Scooby and Donna,

  • nsmith36
    nsmith36 Member Posts: 5
    edited March 2017

    Hi all! I also was diagnosed with TNBC in 2007. Almost 10 years ago and I am so happy to say I am still here. There is hope don't give up!

  • vlh
    vlh Member Posts: 773
    edited March 2017

    Fabulous, Nora!

    Lyn

  • Reina_de_los_changos
    Reina_de_los_changos Member Posts: 8
    edited March 2017

    Scooby Do-- YAY! Thank you! :)

  • kjlady
    kjlady Member Posts: 3
    edited March 2017

    I was diagnosed on March 22, 2017 with Triple - Negative breast cancer . I am 68 and divorced , with 2 kids and 7 grandkids and a great granddaughter due on April 17. I am shocked by this news . When I made an appointment with my GYN doctor, she did not even detect the lump. I had to point it out to her . She said it was nothing to worry about it was just a 'clog' in my lymp node. But since I was due for a mammogram I went ahead and had the mam done. It came back suspicious . I had a repeat mammogram with a paddle and an ultra sound . Then they wanted to do a biopsy . I found out last week it is Triple - Neg. breast cancer . The cyst is 1.8 cm . It was the size of a pea when I found it . Since they did the biopsy it now feels like a golf ball . The oncologist says it has not enlarged this is because of the swelling from the biopsy . I don't think so ! I believe the biopsy had an effect on it . I met with the oncologist for about 2 hours . He explained what this is , how dangerous it is , BAD , and the need for surgery . Do a full mastectomy or a lumpectomy !!! I can't decide which one I have the greater chance of surviving . I have to tell my kids and have them help me to decide .

  • moderators
    moderators Posts: 8,633
    edited March 2017

    Kjlady-

    We're so sorry you find yourself here, but we hope this community is a source of support and encouragement for you as you begin down this road. The first days and weeks are very difficult, and you'll have a lot of decisions to make. There is help and advice here, when you need it, and we're all here for you!

    The Mods

  • kjlady
    kjlady Member Posts: 3
    edited March 2017

    Thank you !!! Since I have the Triple - Neg , I tried researching alternatives rather than chemo/RAI/surgery !!!

  • moderators
    moderators Posts: 8,633
    edited March 2017

    Kjlady-

    For some more info on triple neg and to connect with others in your shoes, you might want to check out the forum on triple neg here in the community: https://community.breastcancer.org/forum/72. Lots of good info there!

    The Mods

  • ettasmom
    ettasmom Member Posts: 4
    edited March 2017

    Hello,

    I was diagnosed in Sept 2011. Invasive or Infiltrating Ductal Carcinoma (IDC) - August 31, 2011 Stage IA, Grade 3, 0/2 nodes, ER-/PR-, HER2-. I did 32 rounds of radiaton. No chemo. I have been cancer free since then. 5 years 7 months. I did radically change my diet and exercise routine. I do yoga daily and try very hard to eat only clean food. No added sugar, processed food, caffeine, (alcohol in moderation) no soda, junk food. Fresh veggies, fruits, fish, chicken. There is a great book I found on amazon called Radical Remission. It has lots of uplifting stories and therapies to do in conjunction with traditional therapy. It was a help for me. I also really look into any food as medicine information because I believe that to be true. Good luck with whatever choices you make. It is such a shocking diagnosis and urgent time for you right now. You will get better, the shock will lessen. Get support from others who have been there. I no longer think about cancer daily, but it took a long time. My best wishes for a complete full recovery and a joyful life, you can do this!

    Deb

  • Kayla23
    Kayla23 Member Posts: 15
    edited March 2017

    HI there -

    I'm not sure if I should start a new thread - my mom was just diagnosed with TN and I'm really really scared. It was found early (it's about 1cm) through ultrasound (not mammogram at all). I've already been with her to surgeon appointment and now will go with to oncologist. I just have so many questions and just want her to be ok!! I want to be sure she's getting all the support and best care in the world. I am feeling such panic and sadness at times too. Trying to manage everything!

    Thanks for listening (and again if I should have posted this in a new thread please let me know!).

  • RebeccaNYC
    RebeccaNYC Member Posts: 1
    edited May 2017

    Hi - just celebrated my 12th year cancer free of TNBC and wanted to pass along the hope. It feels like just yesterday I too was on these boards searching for any information I could get my hands on regarding TNBC -- treatment, prognosis, anything to tell me it might be OK. Back then (knock wood I can actually say that), there wasn't as much known about TNBC aside from it's lethal properties. Also, there weren't as many visibly success stories online (my oncologist told me that the newly diagnosed and sicker patients tend to post more often, so you don't always hear about survival), so I swore that if I were ever to pass the 10 year mark I would pass the hope on.

  • anothernycgirl
    anothernycgirl Member Posts: 821
    edited May 2017

    Rebecca! Thank you for posting!!

    Here's to decades of more good health for all!!

  • Stupidboob
    Stupidboob Member Posts: 330
    edited May 2017

    congrats Rebecca and thanks for sharing.

    I have 6 years from first diagnosis and 4 since the 2nd......praise the Lord

  • vlh
    vlh Member Posts: 773
    edited May 2017

    Thanks so much for thinking of us, Rebecca, and CONGRATULATIONS!

    StupidBoob, I was pleased to see that you're four years out from a Mets diagnosis. I didn't realize that Cytoxan and a Taxane would be used again with a recurrence. If you're comfortable doing so, could you tell us a little more about that?

    Lyn

  • moderators
    moderators Posts: 8,633
    edited May 2017

    Rebecca-

    Thank you for sharing, and congrats on 12 years!

    The Mods

  • Stupidboob
    Stupidboob Member Posts: 330
    edited May 2017

    Hey Lyn,
       well I was going in for my almost two year check up and my world got turn upside down again......so, biopsy confirmed that it has spread up my lymph nodes to right under the collar bone and between the major and minor pectoral muscles and the surgeon said that unless it was life or death, that he would not operate because of where the tumor was located, as I could lose the use of my arm with one wrong cut or slip.   So, I had to go through chemo again and this time get radiation.    Yes, she did use the Cytoxan and Taxotere this time instead of the Taxol.     So far so good.....thank the Lord.

  • vlh
    vlh Member Posts: 773
    edited May 2017

    Needing chemo a second time is the pits, Sadie, but YIKES on the riskiness of surgery. I hope you remain stable.

    Lyn

  • Cratty
    Cratty Member Posts: 2
    edited June 2017

    kjlady, I had a very similar experience in November. My family doctor did not detect in breast exam. Then had a schedule mammogram. Result was Triple Negative. I'm 55. I had a lumpectomy upon suggestion of my surgeon.

    Followed by:

    - 4 AC chemo every two weeks

    - 12 Taxol - every week

    - 22 Radiation

    - not sure what happens after this.

    I guess I haven't felt so much doom and gloom until I visited this site. I know TN is tough, but my doctors are pretty reassuring.


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