To the newly diagnosed: 6 Years With TNBC, Still Going Strong

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Jojobird
Jojobird Member Posts: 203
edited February 2022 in Triple-Negative Breast Cancer

Good morning, everyone. I’m stopping in after a long hiatus to offer some help to those newly diagnosed with TNBC.

Almost 6 years ago I was diagnosed with stage 3C triple negative breast cancer. I was in total shock, grief, and had to stop working due to anxiety and depression. I have had two recurrences since then. I am currently stage four, but I have had no evidence of active disease for six months now, and I’m going strong.

I honestly didn’t think I’d live more than two or three years. But we’re going on six and I can hike travel, friends, garden, family, and do the things I love. I will be seeing my daughter graduate high school. Of course I have long-term side effects, but unfortunately that is part of the package. I am learning to accept and manage them.

I’m writing this message to say that there aren’t a lot of long-term TNBC survivors in checking here, because we are too busy living life.And there is help out there. There is hope out there. New treatments and trials are coming out all the time. So if you are new, or worried about your diagnosis, just know that there are people out there living for years and years.

Wishing all of my breast cancer sisters much hope and love this holiday season.



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  • ARJal
    ARJal Member Posts: 16
    edited December 2021

    Thank you for this. I am in the middle of chemo for stage 3C and can’t shake the fear off. Sometimes I feel there is no hope and stories like yours mean a lot.

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  • NorCalS
    NorCalS Member Posts: 288
    edited December 2021

    Jojobird,

    Thanks for posting. I was diagnosed as 3c/4 (supraclavicular node made me a debatable stage 4) over 2.5 years ago. It’s still a ways to go before I hit the 5 year mark, but I have lived longer than I expected when I was first diagnosed. I hope you have many more decades of NED

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  • ARJal
    ARJal Member Posts: 16
    edited January 2022

    Hi @NorCalS,

    How many positive nodes did you have? If you don’t mind me asking. Thank you!

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  • NorCalS
    NorCalS Member Posts: 288
    edited January 2022

    Hi ARJal.

    When I was diagnosed, the initial biopsy taken from breast and two lymph nodes near armpit showed IDC. CT scan showed enlarged lymph nodes along chest wall and supraclavicular area (three were palpable). After AC-T and lumpectomy, one sentinel node was positive (4 mm). I had axillary dissection and the other nodes had isolated tumor cells, but I think only the 4 mm sentinel node is technically positive.

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  • ARJal
    ARJal Member Posts: 16
    edited January 2022

    Thank you for responding! I’ve been confused about my lymph node involvement. I had an enlarged LN at diagnosis and it was biopsy proven to be positive. However, all imaging states that several lymph nodes look suspicious. So, I’m not sure how many are actually positive. I guess I’ll find out after surgery. It’s just nerve wrecking. Best to you, hugs

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  • serendipity09
    serendipity09 Member Posts: 732
    edited January 2022

    JoJobord - thank you for checking in. It's nice to see these types of post. Def gives me hope!!

    ARJal - hope everything goes well for you!

    Hi NorCalS!

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  • NorCalS
    NorCalS Member Posts: 288
    edited January 2022

    Hi Serendipity.

    I caught up reading on the Xeloda (for maintenance) thread. I hope your SE have eased. This has been a tough road for you and I hope you see some relief soon.

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  • Jojobird
    Jojobird Member Posts: 203
    edited January 2022

    Hi everyone! Just so you know I had 21 nodes involved! All packed with cancer. I'm still here, ladies.

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  • Krissy37
    Krissy37 Member Posts: 291
    edited January 2022

    Hello All,

    I can also say that I am 4 years out as of 1/25/2018! Going strong with no additional issues. I was 47 at diagnosis of TNBC. I still have my moments when I’m petrified of a reoccurrence or worse… but for the most part I feel like I’m back to living a normal life…where every thought is no longer about cancer..it does get easier with time.

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  • Optimistic_Missouri
    Optimistic_Missouri Member Posts: 24
    edited January 2022

    This thread is very helpful. I was diagnosed with TNBC this week. IDC, grade 3. I had been feeling down all morning, so I tried to find an inspirational video of someone who beat it. After watching 9 episodes in the series a brave lady posted on YouTube last year, I felt better. She had made it through her journey. She taught against the cancer and won.

    Then I looked her up on google because I didn't catch what type or stage she was. Just triple negative was all she mentioned. I was just curious. And in doing so I found a GoFundMe page. Her cancer came back a few months later as stage 4 and she passed away 8 days ago. After spending most of the day bawling, it's a relief to see the are some of you out there who really have beat it.

    Hug


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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited January 2022

    3.5 years out, in perfect health. My only residual thing is some scar numbness/sensitivity @ 2 incisions for my lumpectomy to gauge efficacy of chemo. No ongoing issues.

    I had about 3-4 nodes light up -- they weren't sure. One was huge and covered other/s.

    I am much more careful to maintain my health/immune system; eating better, fasting, some supplements, working out.

    3 years after TNBC the recurrence rate drops to very low, and 5 years out its basically zero (except the small chance of a new primary is always there). LOTS of hope!!

    Love your user name... Stay optimistic & be a hard fighter!


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  • NorCalS
    NorCalS Member Posts: 288
    edited January 2022

    Jojobird, Krissy37, and Santabarbarian:

    Thumbs up to all of you. So grateful for your input and continued support.

    Optimistic - I read and followed advice on nutrition to help the effectiveness of chemo against TNBC. Santabarbarian has posted a lot of useful information on these issues, and I think they would be helpful to review.

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  • DutchieGirl
    DutchieGirl Member Posts: 103
    edited January 2022

    I have a friend who was diagnosed with TNBC in 2005. She was stage 2. It wasn’t until years later that she found out she had the BRCA gene. She then had a double mastectomy and her ovaries removed. She is very much alive and well and was so helpful when I was first diagnosed. TNBC and my subtype can be scary but so many go on and live long and healthy lives.

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  • cookie54
    cookie54 Member Posts: 134
    edited January 2022

    JoJo Thanks for posting something positive! So happy to hear you are thriving, I needed to that! I am always looking to see if someone is TNBC when they list their survival stories. Sometimes I need to remind myself that it is possible to beat this. Thanks and best wishes.

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  • ARJal
    ARJal Member Posts: 16
    edited January 2022

    @Jojobird wow! Thank you for sharing your story. 22 nodes after chemo or before? Sorry, I’m still trying to understand the lingo and stats. Hope all continues to go well for you. Hugs!

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  • Kayrem
    Kayrem Member Posts: 164
    edited February 2022

    Hi everyone. Jojobird is right a lot of triple negative survivors (myself included) don’t come back as much because we are busy with life. But take heart…I am 10.5 years out from a stage 3A diagnosis. Just take a deep breath and know you can do this. There is a lot of living left to do!

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  • NorCalS
    NorCalS Member Posts: 288
    edited February 2022

    Kayrem,

    Thanks for coming back and letting us know that you’re doing well. It really gives a lot of us hope and brightens our day. Thanks again

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