Share Your TNBC Story
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Hariry, I did not do chemo, as all scans and tests were negative. I did the radiation, and it went much better than I expected with very few side effects. I feel I am in a good place right now. All the best with your treatment course
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Don't know how to begin, other than after taking care of my husband for three years who passed away in April 2017, from stage IV lung cancer, I went to get my annual mammogram 5 months after his death and they found a lump. I was hysterical, angry, frightened and most of all, totally devastated that my son would have to go through this again with me, after what we had just experienced with my late husband. I learned that this was not my husband's cancer and that my lump was less than a cm. I had surgery and the only cancer they found was the lump. Nothing in the surrounding area and nothing in the lymph nodes. A few days before surgery, my dad passed away. I had just lost two of my favorite men in my life in a matter of 6 months.
My oncologist has recommended 8 chemo treatments and radiation when chemo is over. I currently have had 3 treatments with 5 to go. Lost my hair, feel nauseous a great deal and am trying to stay positive with the loss of my husband. We were married 40 years. I do have so much support from my wonderful son, and my family and friends. I have a lot to be thankful for.
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Dear mas1129,
Welcome to the BCO community. We are sorry about your diagnosis and all that you have been through these past months especially the loss of your husband and your dad.We are very glad that you reached out to our members. Please stay connected here and gain the support of our community. Let us know if there is anything we can do to help you to better navigate your way around the discussion boards. The Mods
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Dear mas1129,
I don't know what to say. When I was informed of my condition-a triple neg breast ca I thought that was the end of the world. You are truly a brave lady, darling. I can't say I fully understand your pain but I'm sure we can go through this eventually.
Which chemo regime, btw, was scheduled for you?
Rose(hariry)
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Mas, so sorry for your losses, and for your diagnosis. You are not alone. Please feel free to join a big group of fellow TN people here: https://community.breastcancer.org/forum/72/topics/752075?page=1114#idx_33418
In the meantime, you shouldn’t be having so much nausea. Please ask your doc to change or adjust your meds to you are more comfortable.
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I am receiving four treatments of Adriamycin and Cytoxan and four treatments of Tazol. Will be getting my fourth treatment of Adriamycin and Cytoxan on Friday. The first two treatments I had a neulasta patch for the possibility of a lower white blood count. The neulasta worked. I didn't have to get it the third time because my white count was high. The neulasta is painful, but my doctor recommended Claritin. I started taking one each day for three days before chemo and three days after chemo. It was great. No pain at all. It really works.
Also, thank you for your kind words. I'm keeping an optimistic view. Well, trying my like heck!!
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Thank you for your kind words. I do feel brave and I do feel so connected to us, meaning all those afflicted with this terrible thing. You are none the less brave. We gotta try to keep positive, although sometimes, it's so difficult. The best to you.
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Wondering if posters on this thread are aware of up and coming proposed changes to BC.org site. Here's a link if you want to inform yourself.
Are You Aware of/Concerned about proposed BCO thread changes?
GP
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Hello my name is Helen I am 57 and was first diagnosed in 2013and I have just recieved 2nd dx of triple neg IDC. Waiting to have CT scan but wanted to touch base. I read somewhere today that some people just know. I knew because I felt a lump but I also knew it was going to more than DCIS because I can feel in my armpit. Now I am questioning every ache and pain, so I will be very relieved when I get the results for staging. Surgeon has already indicated it will be chemotherapy to begin.
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Hi my name is Sharon, I am just about to be done with radiation! Just two more treatments out of 35. I was diagnosed with TNBC on June 9th, 2017. I did not know there were so many kinds of breast cancer. Learning about it was a bit scary and learning it was grade 3 was not good. I did have early stage ( stage2A) on my left breast. And no lump nodes lit up on Pet scan or after biopsy of 2 of them. I have had 16 weeks of Chemo (8 treatment) 4 AC and 4 Taxol, a Lumpectomy, and Radiation. I feel not missing my regular mammogram saved my life. I was 65 when diagnosed and considered getting it every 2 years but was advised at the cancer center to get it every year. So happy I listened. The doctor says my chance of reoccurrence is 20 percent. I will take this! I feel positive about my future, it has been a long process but I have met so many wonderful people and the staff and doctors all have been most excellent at Misson Hope! I am forever changed but in a good way.
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Thank you, HelenLouise and Sharrose, for sharing your stories!
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My name is Amy and I'm 51. I was dx with tnbc on October 18, 2017. I had two tumors side by side in my right breast. One was 2.7 cm and the other was 1.3 cm. I began chemo on Nov. 16,2017. I had 3 A/C every two weeks, but had to skip a 4th dose due to side effects. I'm now on my 8th weekly taxol with 4 more to go. I'll have surgery, a unilateral masectomy with tissue expander near the end of April. I'll have another surgery to insert a small implant 3 months after initial surgery. This cancer pissed me off because I've done everything to avoid taking medications since I feared all the side effects I hear listed in commercials. I had no family history of BC, nursed 3 children, had a late period at 15, menopause at 50, never smoked, ate healthy meals, and exercised daily. What a crappy diagnosis! All I can do is accept that life offers no guarantees and follow medical advice. I'm doing well on taxol and I am back exercising daily and eating mostly clean. I'm hoping I get lucky and never have a recurrence. This is a bummer, but then again, everyday children are in hospitals fighting cancer. I try to remain grateful for my mostly good health up until this dx.. I had a frozen shoulder for 2 years prior to my TNBC dx. That was no picnic but it resolved on it's own and I didn't take any medication for it. Chemo is scary, but given the size of my tumors, I was too afraid to do alternative treatment. Good luck to everyone facing TNBC. Hopefully we all get through this and never have to face it again. So thankful for my husband, family, friends and my 2 dogs. I didn't need cancer to appreciate life fully, but whatever, it is what it is.
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Thank you so much for sharing your story, Grayowlsrock!
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Hi, my name is Christine and I was diagnosed with triple neg breast cancer in Dec., of 2017, just 3 weeks after my husband passed from lung cancer. Im 67. On Jan. 30, 2018 I had the tumor removed. It had grown from 2.9 to 3.2 in one month. No lymph nodes showed cancer and the margins were clear. I was stage 2A. I have decided no chemo or rads. The June mammogram showed something but was too small so I will have another mammogram in Dec and a biopsy. I was told the biopsy would tell us how far along we are. I will not have anything else done. I want to be with my husband and the drs. are honoring my decision and said I will go palliative care and will be made comfortable.The only reason I had the lumpectomy was because the tumor was very close to the surface, you could see it when I laid down, and I was told it would come thru the surface as it grew and would be nasty. I wasn't going to have anyone deal with that when it would have been my fault. I was given 3 years. I hope the drs. are right. I have hi blood pressure, depression, ptsd, and anxiety and Im on meds for that. Its not from the cancer. The cancer is a way for me to be with my husband sooner. I was very calm when diagnosed and joked with the techs. when I had a MRI and PET scan. The surgery wasn't painful neither was the lymphoma that developed. Had home health care for 6 weeks to change the packing under my left arm and that didn't bother me either. I was very tired and slept a lot. I believe I didn't notice the pain from the surgery because of the grief of losing my husband. I noticed the lump in late August but didn't tell him. I know Im a hot mess and just going thru the motions but I'm at peace with my decision.
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Hi Christine! I read your story and I find it so heartbreaking. I am so so sorry for what you went through and what you are going through. I can understand how you feel. It is sad that the timing of your diagnosis was right after your husband's passing. Life is sometimes brutal and definitely not fair and we are just pawns in it all I guess. I am now a 5 yr triple negative survivor and I made my choices as I know you are making your own. I had 2 surgeries (margins weren't clear first surgery), 8 rounds of chemo and radiation (I am embarrassed to say I don't remember how many sessions anymore!!!). Time moves on and heals lots of wounds and changes lots of things. Did you speak to a counselor about your decisions and I am sure you have children or other loved ones who would miss you? Believe me, chemo was no joke but it was A LOT easier than I had anticipated and you never know what lies ahead for you and what is around the corner. I hope and pray you are at peace in whatever you ultimately decide. Just wanted you to know there is someone out there thinking of you and sending you the warmest and best wishes. XXX OOO LISA
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Hi, Christine; I'vet been reading your story and just wanted to let you know I am thinking about you. I understand your decision; if that is where your peace lies, I believe it will help you to deal with what comes in the future. When we are in turmoil, we have no peace at all. Take care. Hugs.
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Hello,
I'm just checking in. I had my mammo and ultrasound today. 7 1/2 years out. Just wanted to post because there are many women with triple negative and have moved on with their lives and no longer visit these forums. I know how important it is to hear survival stories and wanted to share my update.
You can survive Triple Negative!!!
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Congratulations missrachel1 on 7 1/2 yrs!!! And thanks to you and all who are so thoughtful to share and encourage us in the "hoping this worked" phase. It helps so much!
Vickki
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Beautiful to hear from survivors! I am working on joining your ranks. I have had a great response to chemo, 2 left, and will move on to lumpectomy of my melted tumor.
I am so interested to know what long term survivors did to prevent recurrences. Did you guys have pCR? If not did you do adjuvant chemo after neo adjuvant?
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PS I think my response has been helped by a ketogenic diet, lots of exercise, pre chemo fasting, supplements, plus High dose Vitamin C, artesunate, and glutathione IVs. Taking melatonin and metformin as well. I think it's important to throw everything at TNBC in the first round, so that's what I am doing. I am looking for followups, even if I have pCR.
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Hi All:
I was diagnosed with TNBC ten years ago, the day before Thanksgiving 2008, so I'm calling this my ten year milestone. My largest memory of that time was just how incredibly angry I was. Having spent my life as a caring, cooperative person, I did far more for others than for myself. The idea that my turn might never come infuriated me. It was shocking. And then I got busy. I had a lumpectomy, after which I was told I had IDC, Stage IIB, and told I had a 29% chance of being alive and well in 5 years. Four of 14 axcillary lymph nodes taken were cancerous, as well as the sentinal node. I said to throw the book at it, and we did. Six daylong rounds of taxotare and and cytoxin, three weeks apart. We skipped the A drug because my family history of heart problems, and its toxicity would not be a good fit, and the added benefit was minimal. Then seven weeks of daily radiation. Having control over my treatment was important. I never postponed anything for any reason. When my sensitive skin was not tolerating the radiation, we just reorganized the schedule so I got protons instead of electrons until I healed up. When I snorkled down a bag of Ruffles potato chips before chemo, and was so puffed up from the sodium no one could get a needle in a vein, I drove to the hospital and had a PIIC line installed. I came back and my loving oncology nurse stayed late to get those bags of poison into my bloodstream.
For me, the hardest time was the first years after treatment, when I could not take action, but had to wait to see the results. I exhaled a bit when there was no recurrence in a year and a half. Again at three years out. At five years I thought, "I think I'm done with this monster." My oncologist said we had well and truly killed it. One last trip through The Tube confirmed it.
What was also hard was that people think once you are done with treatment, you will instantly be just like before. "Your last treatment is over! Let's go out for drinks!" This, while I'm counting off on my fingers what I felt I needed to do every day beyond resting and sleeping and trying to keep my job. Every little task equaled 1. Put the laundry in the washer - 1. Move it to the dryer - 1. Fold the dried laundry - 1. Putting away clean laundry - 1. Feed the cats - 1. Give the cats fresh water - 1. Scoop the litter box - 1. Feed the rabbit - 1. Give the rabbit fresh water - 1. Clean the rabbit litter box - 1. Bring in the mail - 1. Pay the bills - 1. Buy groceries - 1. Bring them in from the car - 1. Put them away - 1. Cook dinner - 1. Load/unload the dishwasher - 1. Take out the trash - 1. If I got to ten items a day, it was a good day as I'd met my goal. During this time, some really amazing things happened. My trash bins mysteriously moved themselves to and from the curb. My sisters sent me a big box of frozen gourmet meals which reflected more their ideas of what I might want than mine, but it was a lot of food that needed nothing but a few minutes in a microwave.
So, my advice to my friends here is to take care of yourself. Advocate for yourself. Allow others to lend a hand. Don't feel bad if you don't want to hit Happy Hour when you are beaten halfway to hell by treatment. You will get stronger, but it takes more than a minute. And believe in yourself. You CAN do this, and having an attitude is good because your opponent is strong.
Love to you all.
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Christine,
You just suffered a huge loss. Perhaps let yourself get well while you recover from that?
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Great news!
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Wow, what a great story. Thank you for sharing your triumph! It gives hope to many of us!
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santabarbarian,
My surgery was before any oncologist because I'd had a breast tumor before that was benign. So we all assumed it would be the same again. It wasn't. It was really bad news.
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Hello everyone; I am just checking in to see how you all are. The last three months have been SO busy with projects and funerals to go to and another recent CT and Bone Scan; the CT scan came back as negative for disease, and my oncologist did not anticipate anything with the Bone Scan; in fact, she said she thought they were overstating the possibility of metastases in the spine, as she believes it is calcium build up because of osteoarthritis. I had the Scan yesterday and she said if there was no change, she would not order any more. So my "happy news" is that I am 16 months past surgery and 11 months past radiation therapy, and everything seems to be good. That doesn't mean I won't worry about what the next scans will show, but at least I can "rest easy" for a little bit. This has been a crazy week with four appointments in four days, but hopefully we can sit at home for a while and have some quiet time. Hope to have some free time to catch up with everyone these next few days. Thinking of you all, and hoping those of you who are celebrating Thanksgiving today have a very good one.
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I am a 7 year metastatic TNBC survivor, diagnosed Feb. 2011. My son was 2 at the time and I was 35 yrs young. Had chemo (taxol, AC and Carbo) rads and bi mast. Wanted a 2nd child and went thru 3 failed IVF transfers. Drs. said I had less than 1% chance of conceiving after tests due to Chemo and age. I just turned 43 and now 25 weeks pregnant naturally. All tests are positive and looking to deliver April 6th. We are truly blessed and believe anything is possible after cancer. I wish you all the best of luck and hopefully my story can give someone hope that it is still possible to conceive after chemo. Happy holidays to all
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LilyTang, wow, what a story! We are so happy for you and sending you all our well wishes for a continued good pregnancy, and health. Please keep us posted!!
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Hello LilyTang,
I read your post with great interest and I am sure your seven year survival with metastatic breast cancer with triple negative receptors will encourage and motivate a lot of patients.
Congratulations on your pregnancy and wishing you all the best for your due date on April 6th.
I would be interested to know what kind of breast cancer you had.
Sending you best wishes.
Sylvia xxxx
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Hello Sylvia, I had invasive ductal carcinoma. Metastatic TNBC that spread to my nodes and chest wall. Let me know if you have any other questions.
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