Someone here survived triple Negative ?
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I just had my post chemo imaging done, and it does not show live cancer! Of course, pathology gets the final word but I am thrilled as I had two 3+ cm tumors and they have disappeared.
I threw the book at it too. I did the chemo plus kept to an exercise program, a ketogenic/mostly vegetarian diet, fasting-mimicking before the chemos, and a raft of daily supplements. I also did some complimentary therapies, like vitamin IVs, and hyperbaric oxygen. Early on, I had a consult with The Block Center in Chicago, an integrative cancer center, and got a detailed plan from them that I followed. They totally emphasized exercise and pushing your heart to be in fitness mode, not lie around mode. Dr Block has a book called Life Over Cancer that has a lot of info.
I just wanted to feel like I did it all, so in the event that there was a bad outcome I would not reproach myself.
The "bad news" about TNBC we all know.... the paucity of followups, and the virulence of the cancer. The good news is that it can respond really well to chemo because of the high grade.
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love hearing these stories. I was diagnosed w stage 3 triple negative back in April. Was hit hard w DD chemo. Red devil 4 every 2 weeks then taxol 4 every 2 weeks. Then I had bilateral mastectomy, 4 weeks ago. Radiation for 25 sessions mid Jan. I worry so much even tho after mastectomy was told pathology came back all clear! But agree don't google. I did today and I'm so depressed now. I have a 4 yr old. Scares me so much. Never going to google again for info. Will come here from no worries on. Need the positive stories. Thank you to all of
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I was diagnosed in October 2018. Left breast, 1.8cm, grade 3, breast MRI clean with only this one tumor. Surgeon classified me as clinical Stage 1B. I've finished my AC and have only 6 cycles left of the Taxol. I was a lot more positive on the AC. I think this had to do with the fact that my tumor shrank right away. By the third AC, my doctor could no longer feel it. I know how important it is to throw the kitchen sink at this. And I'll finish the Taxol gladly. But staying upbeat is harder now. There isn't a way to know it's "working". Seeing this survivor stories definitely helped. And I believe I will beat this. But the worry is still there. I have a 15 yo that I can't imagine not seeing graduate from college or get married or have kids. I just want to get through the rest o the Taxol and have surgery. I pray for a PCR. How did you do it? Words of wisdom? I've been very blessed that I've had no side effects to speak of.
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Survived and thrived. Almost 14 years right here! Did TAC chemo at 41 with no evidence of disease since. I turn 55 on Friday
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People with TNBC:
If you are interested in Proton Radiation-- insurance is covering me, for my left sided TNBC. Even though I had a pCR. I am moving on to Rads now. Will likely receive treatment at ProCure in NJ.
SB
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Hi
I had Chemo first and still had residual cancer in breast and two lymph nodes. Are their long term survivors of
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Thank you for this.
My cancer doctor said she expects me to definitely live 10 years (I haven't started treatment yet, still finishing up tests, chemo probably in 2-3 weeks)
And then the internet started making me think it was hopeless. Already dreading chemo, surgery, etc. it was soul-crushing to think that it could be to no avail...
#1 I should listen to my doctors not google
#2 kill it with fire - take any treatment they give me
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3 years past diagnosis, and delighted. Had Lumpectomy, then 4 AC and 12 Taxols, then 15 radiation. I think it is safer to do all you can to get through this and don't skip out on anything. Of course best to discuss your case with your Oncologist as everyone is different.
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I know this is an old post, but maybe someone is still reading it. I have TN, very early stage. Lymph nodes free. Still some margins in my final shave. My doctor says there is a 10 percent chance that it might return if I only have radiaition. If I combine that with chemo, there will be a 6 percent chance. Because I have a genetic disease called Charot Marie Tooth, I already have very bad nephropathy. Chemo will make it worse. I'm thinking about opting out. Any advice?
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TuesdayStar,
Yes, TNBC is a nasty little shit. BUT, it reacts very well to treatment. I was diagnosed in 2008, had a lumpectomy and 14 axcillary lymph nodes (as well as the sentinel node) removed. Four axcillary nodes were malignant, so I was at Stage IIB. Given a 29% chance of being alive and well in 5 years. So I threw the book at it. Did 6 rounds of heavy chemo, 7 weeks of daily radiation, and took a while to rebound from that. But I'm over ten years out and there is no sign of that nasty little shit. So I dodged that bullet. Please do not give up based on google scare stories.
Good luck to you!
Yellowdoglady
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Missourimom,
Can you try a round and see how it goes? Your blood will be checked every time, and if there are no side effects, maybe the chemo can work its magic for you?
Yellowdoglady
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Good going, Numb!
Yellowdoglady
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I will be 5 years clear come June 2019. had double mastectomy, clinical trial neoadjuvent, dose dense AC with12 taxol treatment was no fun....but having fun now.....there is life after TNBC! your life is worth saving.
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Hello Ladies,
April 11th will mark my 1 year date that I had my tumor removed. I was at stage 2 with HR 2 Triple Negative. I had took the partial Mastectomy route with reduction and lift with the other. I had 3 lymph nodes removed with no cancer in the nodes or the margins around the tumor.
In November I had my mamo everything looked great and 3 weeks ago I had my blood work done and I continue to be cancer free. I feel great. I feel better than I have in years. One of the plus things about the cancer is that I have lost a lot of weight. i was very over weight. I have lost 85 lbs and I continue to lose. I promised myself to join planet fitness once I was feeling up to it. I just did that and I had my first walk on the treadmill last Friday. They say to help keep cancer away is to incorporate excercise into your life. Well that is what I am vowing to doing. I have never been one on ecxcersise. Never!!! So, I am going to do this. I plan to do it at least 2 to 3 times a week. Just starting on the treadmill at first and then maybe lifting weights. What helped me through my cancer is really getting in my head with the mantra 1 day at a time. Well with this too I will do this. I have also really been very careful with what I am eating. I am eating more healthier. More veggies and fruit. Putting half veggies on my plate. I have also made my plate smaller. After chemo I couldn't eat very much anyway so I learned I could live with small amounts of food.
I hope a Year from now I can look back at this and I can still be as happy and cancer free as I am now. Good Luck Ladies May we all have Gods Blessings as we WILL BEAT CANCER ONE DAY AT A TIME!!!
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Bravo Venture Val!! Great to hear these stories!
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HI,
I'll add a counterpoint to the "do not google" advice.
Google brought me here. Google turned up advice on how to deal with side effects. Google brought me to sites on research that are vetted and verified.
Google also throws up a lot of crap.
My take - google and research, but be discerning. If it sounds too good to be true, it probably is. If is sounds like sensational fearmongering, it probably is. Use your good judgement, look for solid sources and data you can verify. Google has been my friend as I try to navigate, but it's a friend you have to keep a skeptical eye on.
Also, I'm in the thick of treatment for TNBC. I took the "everything and the kitchen sink" approach. My tumor has shrunk from 6+ cm to not palpable. I have 6 chemo sessions left, then surgery, then radiation, then maybe more chemo. My sense is there is a tsunami of new treatment options coming relatively soon. There was a new immunotherapy protocol approved literally last week. I think if I can stay alive for the next 24 months, then my outlook improves dramatically for the long term.
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Way to go kber-- I agree with everything you said, and I am THRILLED to hear about the response you are getting!!!! Yowza!!
It's hard to even know what *questions* to ask if you have not done at least SOME googling... it's good to be an informed consumer and have a clear picture of what is happening, and what the stats are on your cancer, and the stats on the various treatments that are proposed.
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Thanks, Santabarbarian! I am a bit of a data geek. Luckily my oncologist is also a data geek and is 100% willing to geek out with me over the latest studies (or old studies) and is pretty excited dive into the weeds with me. I could see how his clinical "bedside manner" could be off putting to some, but I find it reassuring that he's taking a research driven approach to treating me, rather than relying on whatever he learned in Med School 15 years ago.
He is also completely willing to discuss whatever I've found on google in a non condescending way and to either validate or refute it with medical studies and documentation. On our first visit I warned him that I was going to research the crap out of things and come to him with a thousand and 2 questions every visit. If he was going to find that annoying or threatening, that he should immediately refer me to someone else. Instead I found a kindred spirit.
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Its been nearly 5 years ago since my surgery....I will be 5 years cancer free in June this year.
When first diagnosed I googled and yes I thought my diagnosis was a death sentence. I found my oasis of peace and support in this wonderful forum where I read almost every story I could about other woman's journey on the TNBC path. I made by treatment choices based on the best outcomes of other woman with my type and stage of cancer.
I am very happy with my choices and the outcome...but we all know there is nothing guarantee what worked for me will work on everyone.
I believe if I were to share a secret to someone just beginning the journey.....is educate yourself on every aspect of your disease/treatment and care...be proactive. don't worry about tomorrow, focus on today....each day you worry about tomorrow is another day lost to cancer.
prepare for the worse....but hope for the best.
the resources and support found here is amazing, and questions are always answered with professionalism and compassion. You are in a place of great healing and support. welcome all.
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Yay, Checota! Congratulations on hitting that all important 5 year milestone. I'm halfway there.
Best wishes for continued good health.
Trish
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I am 6 years out! I don’t think about it like I used to, but I keep my reminders up so that I never forget how lucky I am to need to remind myself.
It was not easiest thing I’ve been through, but there have been harder times in my life. I’m just greatful I’m still in this world and am hoping all those who are fighting this for the first time or more know that there are survivors of TNBC.
I have a friend who had this cancer 20 years ago and she is still thriving!
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Hi all
I haven't posted in years but wanted to let all of you recently diagnosed, who are terrified like I was, that it was a long, horrible, nasty, stressful, painful, and expensive year of surgeries and treatment but here I am! I will be 6 years post diagnosis in July and still cancer free You WILL survive, and if you decide to be grateful for every day, you will thrive
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Bravo Fiercer & Relocated Tar heel!
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Hi I am a TNBC survivor who was just diagnosed with recurrence within 2 years of being "cured." Initial diagnosis was stage 3 TNBC but after preadjuvant Cisplatin and mastectomy was downgraded to Stage 2 node negative. Had AC post surgery and head of radiology said I did not need radiation. Now I discovered myself a 1mm node in axillary area that they've determined to be residual breast tissue -- not lymph node. Had surgery a week ago and just heard that the margins were clean and it is not nodes. The oncologist plans to give me 12 weeks of Taxotere/Cytoxan with a cold cap (because of the permanent baldness possibility). Then 6.5 weeks radiation. I'm a single mother of 3 and find myself getting very demoralized this time around -- especially since I have no role models for women who have survived TNBC recurrence and the things doctors are saying this time seem much less encouraging, more like they don't want to get my hopes up. The first time I met 3 women who had survived TNBC and been through many of the same treatments and fears. This time I feel very alone and can't seem to find anyone who will tell me it's going to be OK. I would love some positive reenforcement from anyone who has had a recurrence and beaten it and gotten on with their life! I was looking forward to becoming a mentor and a source of hope for other TNBC women but this setback has really shaken me and I've made the mistake of Googling myself into a state of complete panic and dread. Would be very grateful for any reports from those who've made it through this!
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Maybe it is time for a second opinion while you gather your thoughts. Is there a cancer center near you, or a TNBC expert? You did well 2 years ago and you may do well now too! Its still clear in nodes!
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Tumbleweed13,I’m not sure if this is close to you situation, but I have a close friend that had TNBC in 2007 and then another tumor in the other breast TNBC as well in 2009 I believe. She had first breast removed and then second breast removed and chemotherapy after each mastectomy. Here it is 2019 and she is doing fine, she still sees her oncologist quite a bit. But she is well and fine.
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My mother (71years) was diagnosed with tnbc, she refuses chemotherapy, surgery was done on 18 july (mastectomy)of the left breast, histology result after surgery is T2N1M0, I don't know what to do:(
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Yes, of course. I'll be an 11 year survivor in November. There are a lot of us. We just don't check in all the time. Take care of yourself, please. You CAN do this!
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Hi All
I'm new here and trying to figure out how to navigate this website. I was diagnosed in August of 2018 and finished treatments May 30 2019.
I had neoadjuvent chemotherapy with a lumpectomy with a pcr followed by radiation. My mass was 2.7 cm and no longer palpable after 3rd AC.
I'm looking for encouragement and hope from survivors as I'm having a hard time finding my way back to normal life.
Thank you all.
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Dear Cooper08,
Welcome to the BCO community. We are sorry for your diagnosis and all that it brings and so glad that you reached out to our members. There is a lot of encouragement, support and information to be found here. We are here to help you navigate as you need. Feel free to private message us if we can be of help. You are certainly in the right forum for those with Triple Negative Breast Cancer. You may want to review the topics again and find those topics that pertain to your questions and which demonstrate current activity (meaning posts throughout November). We are sure others will be along to provide the hope and encouragement that you and so many benefit from. Again keep us posted if you need any help.
The Mods
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