Calling all TNs
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Thank you all for jumping in and updating so much recently. When I'm having a hard day I go back through and read this thread to remind myself that it's possible for me to come through to the other side of this
Lillierose, your post was particularly therapeutic for me to read. Our stats are pretty similar and I was pregnant when diagnosed at 30 so it's been hard to find a lot of people who have a similar situation to me and are through it.
I'm making good progress and am almost through chemo with my surgical date locked down for September. Thank you all for your continued support and encouragement
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Hello all,
I have triple neg breast cancer. At present NED. Finished up chemo last week of Dec. Partial mastectomy with reconstruction, 6 weeks radiation, lymph node removal. My hair started coming back in April. Very very curly and white white. I actually like the curls being that my hair was very straight but had full body. Lost it's natural color of light brown, but the white white looks okay. Covid and all cant get it colored. My hair was very thick, now baby fine and still have some sparse spots that the curls hide. I hope my hair thickens up, but I'm just so happy I have hair again. Eyelashes came back nicely, no eyebrows, and haven't had to shave legs in over a year, same with arm pits. Nose hair back, at least my nose doesn't run like a faucet anymore. Lucky to be alive, it has been a year since diagnoses
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Martaj,
Congratulations on your cancerversary! I'm so glad you're doing well. Curly white hair sounds beautiful! It's so interesting how our hair changes so much when it comes back. Not having to shave legs was definitely one of the few perks to treatment.
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Martaj Bravo on getting to one year!!
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Congrats Martaj. Sending virtual hugs.
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Thanks for the link, LovemyVizla. Good stuff in the pipeline for us Triple negatives.
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Has anyone been cured of triple negative breast cancer without chemo?
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smrdmnd, you can enter the data (tumor size, hormone status etc) into this calculator and see the statistical odds of survival for various periods of time with or without chemo. "3rd gen chemo" wd be standard for tnbc
https://breast.predict.nhs.uk/
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I think what I had was considered 2nd generation chemo for tnbc. I had 4x AC, dose dense. Taxotere disagreed with me, so we switched to adriamycin.
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MountainMia - from predict "High cumulative dose anthracylcine regimen were shown in the EBCTCG 2012 analysis to be equivalent to taxane based regimen and should be regarded as third generation"
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This is my first response to a forum so bare with me....I am ready to tell my (current) story. Okay, my Triple Negative "journey" goes a little like this.....
At the beginning of 2020, while nursing my 3rd and final child I noticed a rather large lump deep inside my left breast. After the obligatory visits to the OB/GYN, then the Breast center for my first mammogram ever (because I am still in my 30's), then for a biopsy (any other nursing mom's here that have had a biopsy?!... because it's hilarious.....milk coming from everywhere like a sprinkler!! Trying to find the humor in this). Then the meeting when the nurse told me what was what but all I really heard was "Cancer Cancer Caner Cancer! Cancer? Cancer Cancer!!" After I calmed down I found out that I was the "lucky" recipient of:
-Triple Negative, stage 3 high grade invasive mammary carcinoma
BOOOOO! Worst prize ever.
From there it was 21 weeks of chemotherapy followed by a Bilateral total mastectomy. I am 3+ weeks post op and feeling "eh" but I am ready to get back on that Peloton! Ha!
This week has been the first time I could even muster enough courage to come onto this site and join forums. I joke and mess around but this has been so hard. I feel like I am WAAAAAY out of my wheelhouse here. The Triple Negative diagnosis didn't even really hit me either until a few weeks ago. What the heck made me grow a grody cancerous tumor in my body?!?!? Getting genetic tested is my next step...another fear...what if I pass this ability to grow grody cancerous tumors on to my kids?!
I will start reading but I would love to know if many TN's have reoccurring Cancer because I told my husband that I will NOT be getting Cancer again!!! HA! I can not wait to read other people's Journeys. I have learned that everyone's is different and what worked for you may not work for others. I am the Queen of NOT giving unsolicited advice so I am hear to listen and learn! You all seem to be amazing, caring people with stories worth hearing!
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Thanks very much, moth. That's surprisingly reassuring.
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I love this thread
Diagnosed Stage ll, Grade 3 Triple Negative IDC when i was 28 years old, 8/11/2017
Chemo AC/T, Lumpectomy, Radiation finishing treatment 04/2018
So 3 years out from diagnosis for me about to turn 32. I had my little miracle baby 8/2019. We had been trying for 5+ years before cancer and then after treatment they told me my chances where slim as i could not afford to harvest eggs. But here he is and he is perfect. Just turned one.
I saw someone every 3 months till this last visit and now i see someone every 6 month
NED as far as i know 0 -
Carley, welcome. Your question was about recurrence - so TNBC does have a higher risk of recurrence than other varieties, even when caught early and treated aggressively. I don't know if you ever saw the predict site before? Gives an idea of large population outcomes. https://breast.predict.nhs.uk/
Having had cancer once also puts us at higher risk of other cancers. My personal philosophy is to try to be aware of risks and hedge my odds but at the same time, I don't think it's helpful to obsess, kwim. The strategies which *might* influence lowering recurrence risk seem to be part of the healthy living stuff - don't smoke or be around 2nd hand smoke, strictly limit or eliminate alcohol, exercise, maintain normal bmi, eat lots of vegetables... just generic good for you stuff. No guarantees of course. (I drew the short straw)
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Turbokitten88: wow, congrats on the baby! That is such wonderful news!
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Yay for you an your baby turbokitten!
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Hi, Carley! I like you already because you're half my age, but say "Grody." 😄 I know this is a scary time. Many of us experience that weird letdown when we complete treatment. During active treatment, we're focused on "I need to be at my appointment with Dr. X on Monday, then see Dr. Y the following Tuesday. Be sure to have these bras on hand and that prescription filled, etc." Then, all of a sudden, that flurry of focused activity is over and we often turn inward. Along the lines of what Moth said, do what you reasonably can to reduce your risk, but not to a point where doing so becomes obsessive and adversely affects your quality of life. Your Peloton awaits!
To offer encouragement to you and others, I'm pleased to share that I've had another clear mammogram and good CA27-29 blood test results. (Disclaimer: The CA 27-29 test is not a definitive test; rather, an increased level may be an indicator of a problem.) I'm now more than 4 years out from my initial diagnosis. These forums were a huge help for me in terma of information and emotional support. Thank you!
Lyn
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Great news, TurboKitten!
Lyn
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It’s my 4 year cancerversary since the last rads tomorrow. No evidence at all so far of cancer coming back huzzah! For the first year I was convinced that it would return, but now I’m not so sure. I’d like to live for at least another 25 years. I’m due to have a hip replacement in 4 weeks time, as have been getting worse and worse arthritic hip pain since treatment (I’m 54 now, so quite young for this surgery I think. I’m really looking forward to being both disease free and pain free for the first time in nearly 5 years....
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Good news, ScotBird! Congrats on the clear scan, and good luck with your surgery. Can I ask what part of Scotland you're from?
I'm doing okay but honestly, the quarantine is wearing on me and my mood is pretty variable. From everyone I've heard, this is how we're all dealing with the virus -- some days fine, some days not fine at all. Yep, that's me, in a nutshell.
Right now I'm pretty irritable, touchy. Lots of triggers. I live in east central Iowa, not in the worst hit town of the August 10 derecho, but bad enough for my taste. We have several trees down behind our house, a lot of roof damage from one that fell on the house. Just today I finally heard from the insurance claims adjuster and have an appointment for Aug 31. Can't do anything about repairs until after that, but probably wouldn't be able to anyway, because the reputable roofers already have long lists of customers. So that's been tiring, just dealing with the cleanup and so forth. Wah. Poor me, huh?
Also, in better but also tiring news, in June I discovered I have a younger sister, a half-sister, daughter of my dad. The tiring part is just some of the family dynamics that go along with this.
One thing that has come along with this unexpected bonus sibling is digging into information about my dad. He's been dead for many years having died after approx 10 years struggle with non-Hodgkins lymphoma. Last night I saw something he wrote after his first treatments. His first chemos were adriamycin and cytoxan. Exactly what I had last year, AC. That hit me kinda hard. I know it doesn't have anything to do with me, but does it? ugh.
Sorry for the little pity party. No response needed. I guess I needed the catharsis of writing it down.
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MM I can't imagine fielding ANYTHING extra or stressful at all in my COVID daze. I am exhausted mentally just procuring food (and watching people crowd into places with mo masks prolonging sensible people's agony). So you have my sympathy for the storm and the metaphorical storm of family dynamics. But also, cool that you can learn things about your Dad and have a new connection to explore. And it's very interesting abut the same Tx being something you have in common.
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Congrats Lyn and scotbird. It's so comforting to get past these milestones, isn't it? I'm coming up on one myself.
On the 29th of this month, the day between my birthday and my oldest daughter's birthday , it will be four years since I was diagnosed with five kinds of breast cancer. Triple negative in my right breast and four distinct hormone positive cancers in my right. Within two weeks I started my first chemo.
Even though getting to the four year mark does nothing to reduce my chances of recurrence of my ER/PR positive cancer, it's still a big milestone for me. I know firsthand how aggressive TNBC is. I lost my dear friend Marcela to this awful beast when she was just 45. My heart still hurts from her loss.
So, I'm glad to be here. Four years from diagnosis, three and a half years form my BMX and (mostly) finished with my recon.
Through it all this place has been my lifeline. I don't know how I would have made it without all the lovely, courageous, generous women and men who post here.
So I want to say thank you. To everyone who takes the time to help, to comfort, to sympathize. You are, quite literally , lifesavers.
Be well.
Trish
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SantaBarbara-Congratulations on the all clear!!! That is wonderful news!
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ScotBird, four years post‐treatment is an important milestone. Whew! The hip replacement will undoubtedly make a huge difference in your quality of life.
Lyn
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Mountainous, [make that MountainMia...darned autocorrect] venting can absolutely help during these troubling times. It must seem surreal to learn of a half-sibling. What an odd connection to your late father.
Thank you, Trish. Five kinds of cancer? Ohmigosh, this is a scenario where one doesn't want to be an "overachiever." 😔 I'm very sorry that you Iost your friend, Marcela, to cancer. I'm sure you must think about things you want to share with her often.
The four-year mark is definitely important for those of us with TNBC. It must be difficult to deal with facing not only the TNBC, but the more lingering worry about the hormone‐positive tumors.
I echo your gratitude for this forum.
Lyn
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Thank you notdefined!
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Thanks all for the kind messages: Mia I’m in Glasgow now, although I am actually English and moved to Scotland 17 years ago, I lived in Dundee for 8 of those years, and Glasgow for 9 of them.
It sounds as though you have a lot going on it your life right now. Sometimes just one breath and one day at a time is the only thing we can do. Take it easy and be kind to yourself. I’m sending you a cosmic hug.
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Thanks, Scot. I'm trying to give myself a break.
I've probably asked you before about where you live. My apologies for not remembering. I've enjoyed traveling in Scotland a couple of times and would gladly go again (and again and again.) The landscape is beautiful and the people are friendly, helpful, and kind.
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