To the newly diagnosed: 6 Years With TNBC, Still Going Strong
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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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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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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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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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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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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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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Hi everyone! Just so you know I had 21 nodes involved! All packed with cancer. I'm still here, ladies.
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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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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.
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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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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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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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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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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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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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I keep coming back to this thread whenever i feel overwhelmed.
Thank you to jojobird to have started it and thank you to everyone who posted here.
Please know that your posts are much appreciated.
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Hi Tagety,
I’m so glad that this thread gives you hope. I’m still here, still going strong. Just came back from a weekend trip hiking in the redwoods. And I signed up for a cooking class. And I’m still in remission, at stage four. I have done no special diet. I do not take herbs. I eat a sensible, balanced, diet, I do walk almost every day, but otherwise I eat sugar (in moderation) I just live a pretty average, sensible life. We (tnbc survivors) are out here. I wish so much strength and healing for you, and for all of our sisters struggling with this disease. Love out to all.
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thank you jojobird. you dont know how much ur words mean to me.
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Hey everyone,
It’s 2024. Still here, still NEAD. Wishing you all a wonderful summer. Happy solstice! ☀️❤️
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@jojobird - Thank you for posting and congratulations! We're glad to see you around. 💖
Warm regards,
The Mods
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I am 3.5 years out from a diagnosis of TN-IBC, Stage 3B after surgical pathology. When I got the "Inflammatory" diagnosis I thought my remaining time was counted in months, but thanks to modern medicine and MD Anderson I am still here, NED. I carry battle scars (mostly lymphedema and tightness if I don't do my stretches), but at least I'm here to whine about it.
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Hooray Lw, so glad you’re still here. One day at a time!
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You are awesome @jojobir . I hope to get to the redwoods myself.
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back at you, tough old Crow!❤️
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