Triple negative invasive ductal carcinoma

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Hyc1294
Hyc1294 Member Posts: 2
edited November 2016 in Just Diagnosed

hello ladies, anybody out there that has been diagnosed with TNBC?

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  • Kat1984
    Kat1984 Member Posts: 47
    edited October 2016

    hiya, yes I had the same diagnosis as you - triple negative IDC, diagnosed sept 2015 at age 30. I finished treatment in June and life is returning to normal now. It's such a shock and so overwhelming. Are you recently diagnosed? Feel free to ask any questions :)

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  • JXmom2
    JXmom2 Member Posts: 29
    edited October 2016

    Im 27, I was diagnosed october 3rd. Same TNBC, IDC. Just started chemo i do 4 A/C, then 12 Taxol. They are trying to shrink the tumor then il get a DMX.

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  • aterry
    aterry Member Posts: 290
    edited November 2016

    I also have Triple Negative breast cancer and I'll begin chemo on Nov 9th at Mt Sinai's Dubin Center. I've also entered into a study at Dubin on Triple Negative.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2016

    Hi to all,

    I have TNBC too.

    I just went thru my first chemo FEC. I had an overnight stay at the hospital on my MO's advice. I am still in the hospital, 6:30 am, nov. 4. all went well, it took about 5 hours for the actual administration of 2 pre-chemo meds and the FEC. the onco nurse said she slowed down the flow of the FEC so that it wont be too hard on my vein. i will be out in about 2-3 hrs. No side effects so far except for the red pee.

    My advice is dont worry too much about the actual chemo. It simple, almost no pain, and relatively fast depending on your specific dosages.

    ok i got to get ready for my discharge, bills and all,

    talk again soon,

    gmmiph

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  • LifeAloft
    LifeAloft Member Posts: 150
    edited November 2016

    Me too, dx TNBC this past New Years Eve, just finished treatment about 3 weeks ago and feeling really good.

    It's a long, sometimes tough road, but you will get there. Best wishes to you all.

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  • LovesLoons
    LovesLoons Member Posts: 68
    edited November 2016

    Yep! After having hope that I wasn't TNBC because it was rare --- I'm told I'm TNBC. Then after that--what-do-ya-know-- It's inflammatory! (Another rarity). Argh.

    I am happy that my CT scan gave the all clear as far as mets for now.

    Whenever docs/nurses now say -- don't worry, that's a rare side-effect I tell them that's not as comforting as it used to be. Heh.

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  • Meadow
    Meadow Member Posts: 2,007
    edited November 2016

    Hyc, Welcome! So very sorry about the reason, but you will find a lot of support here. I encourage you to explore this wonderful website, there are so many threads that you will find interesting and informative . Please pop in on a thread called, "Calling All TNs", there you will find tons of info and support . Also there will be a thread started by someone going through chemo at the same time....I joined my group , the September 2013 group, and we are still friendsome, offering support and sharing our lives 3 years on going. we are a true sisterhood! Sending you a big hug.

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  • Ebeneezer
    Ebeneezer Member Posts: 1
    edited November 2016

    Hello all. I have been diagnosed with TBNC and I am scared . I had surgery August 15, 2016 and the tumor was removed in its entirety. The cancer was totally encapsulated. Reports are that there was no mestasesis although Grade 3. There were differences in pathological reports and a third report was obtained and on November 9th 2016 a conclusive report was given TBNC. The Oncologist wants to start me off with tamoxifen which I understand has no effect on TBNC diagnosis. I believe the reason for this decision is because since awaiting final results I have not been placed on any meds. With all that I have been reading about TBNC I realized I need to move quickly to begin treatment and other test. Can anyone recommend a Centre in Texas where I can access charity care for an international patient. My research also indicates that TBNC'S are aggressive but my doctors are reporting this was slow growing. Anyone please talk to me. I AM 46.

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  • Rayna_666
    Rayna_666 Member Posts: 24
    edited November 2016

    I was diagnosed in April with triple negative infiltrative ductile carcinoma stage 3c grade 3 with lymph node involvement. I'm 33 years old and also BRCA 1 positive.

    In May I had 4 rounds of A/C. It was not as horrible as I feared it would be. I mean it was not pleasant, but I continued working through it. After that I started Taxol. Everyone said that is much easier so I was thrilled. I only got through 4 rounds of 12 and I ended up in the hospital with Taxol induced pneumonitis. Its a rare allergic reaction that is an inflammation of the lungs. The good thing was, since I obviously couldn't take anymore Taxol, my oncologist ordered an MRI to see where we were and there was nothing detected. So I had an amazing response to chemo. (I was also eating vegan and extremely healthy, meditating, and practicing Qi Gong so I am sure that helped).

    On to surgery. I opted for a bilateral mastectomy because of my high risk for recurrence. Also cosmetically, my tumor was quite large, so I would have been pretty deformed with a lumpectomy. I also had placement of tissue expander. I had 14 lymph nodes removed and 5 showed treatment response meaning they were scarred from the chemo. I had a pathological complete response. No cancer found! I am in the process of expansion now.

    My big decision now is radiation or not. My doctors are "highly recommending" it because of my lymph node involvement in the beginning. They want to make sure there are no missed cancer cells hanging out causing trouble that were missed. I don't know what to do. If anyone has suggestions, they are appreciated.

    Also if anyone has any questions, feel free to ask. I have been through a lot, research everything obsessively, and remain as positive as possible. If I can be of assistance even just to vent to let me know. Its a crazy time for us all... Sorry for the novel!😃

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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2016

    Welcome Ebeenezer,

    We are sorry about your diagnosis but we are glad that you reached out here. Here is some information about getting second opinions that may lead you to centers in Texas. You would have to inquire about payment. The MOds

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  • Rayna_666
    Rayna_666 Member Posts: 24
    edited November 2016

    Ebeenezer, in my experience you are right. My oncologist told me tnbc is very aggressive and all my research has said the same. I was rushed to chemo quickly. Is tamoxifen a targeted therapy? I haven't had any experience with it. I was told there are no targeted therapies for tnbc except some experimental ones. I had a good response to chemo, so I didn't have to look into anything else. As for hospitals, my uncle lives in Texas and he recommends MD Anderson. I don't know what kinds of programs they have, but they are supposed to be awesome so I guess you could check out the website. Hope that helps.

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  • Jemever
    Jemever Member Posts: 8
    edited November 2016

    I have had chemo, paclitaxol. 5 rounds having had a mastectomy, and diagnosis of TNIDC. There were 12 rounds prescribed, but it was stopped at 5, as I had reaction in both feet of peripheral neuropathy. A few weeks later, I suffered weeks of pain starting in my knees, and affecting leg muscles, lower back, and hips. This finally settled into muscle weakness in my right leg with some weakness in the left also.

    My medical 'team', have sent me for every possible test, and finally to-day I have been informed that there are no adverse findings at all, but the only explanation must be the taxol. I have read elsewhere on this site, that for every 5 years that a person is past the age of 65, the taxol side effects will compound the side effects.

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  • Fiddler
    Fiddler Member Posts: 128
    edited November 2016

    hi, I did a search and found this even though I am not triple negative, I was just admitted to hospital yesterday with the Taxol induced pneumonitis. I was pretty bad off when I showed up, I could barely breathe. I finished 3 out of 4 rounds of chemo so they are cancelling the last one. They don't seem too concerned about just missing the last one. I am HER2 positive so it is more important for me to be on the Herceptin.

    I'm not an expert by any means but given your age I would still want to throw the radiation, anything you can, at it. I am scheduled for radiation in January and will do it. The best person to get advice from is your doctor. I am smart and like to do my research on things but I'm smart enough to know how much training goes into their decisions and I like to follow them

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