Share Your TNBC Story
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RHIANNON426 - We must be among the very few people on this site to have ILC Triple Negative. I would feel like you about that second scan and I would want to deal with this now and not in 3 months time. I would be asking my Onc why she thinks I shouldn't worry. I wish you the best with the outcome of this.
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I was diagnosed with TNBC on November 27, 2015. We were on vacation in late October and when I came out of the shower one morning, I noticed that my left nipple wasn't centered. When I examined the area I found a small pea-sized lump. I saw my family doctor immediately upon our return to Canada and he suspected a cyst and sent me for a mammogram. Nothing was seen on the mammo or the MRI or CT scan. Only an ultrasound could image the suspect tumour. The MRI did image an enlarged lymph node. I had a breast and lymph biopsy, only the lymph biopsy confirmed TNBC as the breast samples were too necrotic because the tumour had 'exploded' within my breast and was now the size of a baseball. I was in a tremendous amount of pain. Within 18 hours of meeting my oncologist I started dose-dense A/C and T chemotherapy. I had a good response with the chemo and immediately the tumour began to shrink. I had a bilateral mastectomy and ALND on April 26, 2016 which showed 3 foci in the left breast, the largest tumour being over 2cm despite the chemo, 2/25 lymph nodes and early cancer cells in my right breast. I am currently waiting to start 25+ rounds of radiation.
My picture is of sunflowers because they're tall and strong, always looking towards the light. They show their beautiful flowers even on rainy and cloudy days. I am a believer and know that God is in control, He has a plan for my life and I am going to stand tall and strong, looking to Him even when I am having a 'rainy' day, just like the sunflower.
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Thank you Numb. We are special for sure but not in the way we would like to be. I am calling my doctor and the surgeon who did my bi-lateral mastectomy and show them my report and ask them for a second opinion and if they agree with me I hope to get a second CT scan or pet scan. I feel I need all the support and educated eyes looking at this. I will ask why do I have to wait 3 months as well. I wish you all the best Numb
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I am a TN IBC, Stage 3, I had two sentinel nodes (I believe that is what they called them) that showed cancerous. I was on vacation in Florida with my family when on December 30th I noticed my right breast looked bruised. I made an appointment with my doctor when we returned. Within 3 weeks I was diagnosed, ported up, and starting chemo. I have finished AC and have 5 more Taxol to go with one Carboplatin. I have had extreme fatigue, low counts, missed a couple of treatments because of them, headaches, skin rashes, lost my hair, eyebrows, and eyelashes which now makes my eyes bothered daily, constipation, loss of appetite, etc, etc, etc. Thankfully no nausea.
When done with chemo I will have a double mastectomy, my ovaries removed, and 6 weeks of radiation. I am also BRCA2 positive, so we are clearing everything out.
I have avoided most of the internet unless I see info that is positive in nature. With a diagnosis like this and enough people with a pity look, I dont need to read the negative. My husband is the researcher and I let him. I have my own job of fighting this disease.
I have two grown daughters 22 and 26 that I am fighting for. They have not been tested yet but will. It is for them this battle is worth fighting to ensure they don't have to go through this, they have options now that we know.
My mother had this same diagnosis many years ago. We lost her 12 years ago after a 5 year fight and other complications. We knew nothing about genetics or anything else really, to me cancer was cancer.... not so. And because of that I did not have the preventative options that my girls now will have. And they are young and have medical advances on their side. Because I showed positive for the gene, my sister and brother will be tested, if positive their kids will be tested. There is a reason right there, I can help the rest of my family never have to go through this if at all possible.
I caught mine early as it has not spread anywhere else. I plan to fight and win. I have grandkids I still have to meet.
I am thankful to have found this site. I would rather read and talk with those that are going through or have gone through what I'm experiencing. You really don't know, unless you have been there.
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Thank you so much Milwmama for sharing your story with us.
If you have a photo that would be awesome!
Hugs,
The Mods.
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My name is Nona. I am 36. I have Infiltrating Ductal Carcinoma, Grade 3, Stage 1A. Before I tell you my story, I want to share an article that pulled me out of my dark depression of the day: http://www.medscape.org/viewarticle/711773In October 2015, I went in for a screening mammogram because I had a "hunch" for some time that something was off. It came back abnormal. A week later, I went in for the repeat. The radiologist informed the mammo tech that it was just a lymph node and they'll see me in a year at my annual. PHEW!!!!
On March 18, 2016, I went home from work and for some strange reason, I took my bra off. Probably to seduce my husband but, regardless, I never do that until bedtime. I mindlessly cupped my left breast and immediately felt a very sensitive, pea-sized lump in my axilla. No big deal. Back to Modern Family. But I did set an alarm on my phone to call for an appointment on Monday am.
Monday am, I got an appointment with the doc for that same day. Referral for US and General Surgery was placed. They called me the next day to schedule me for Thursday.
Thursday, March 24, I was watching the radiologist perfom my US. She then suggested that we do another mammo. After the mammo, she said, "how do you feel about a biopsy right now?" I obviously said yes.
Friday am, the report came back BIRADS 5. I was devastated. She was the same radiologist that told me my mammo in Ocotber was benign
Monday, March 28, 2016, I arrived to work (oh, I work in a hospital) with an email from my doc sitting in my inbox. "Nona, please come to my office when you get in this am..."
ICD, Grade 3, 1.7cm. Worst day of my young life. I couldn't stop crying. How do I tell my husband? How do I tell my 3 year old? The tears have rarely stopped falling after that.
I saw the Surgical Oncologist the following Thursday. He recommended lumpectomy because the tumor was so small. ER was 20%, PR was less than 1% and HER2 was 2+. FISH (which took FOREVER to come back) ended up being negative. That was very exciting news. That means there's a treatment, right? Another sigh of relief.
I had my lumpectomy with Sentinel Lymph node dissection on April 27. It was a really easy procedure. I was out of the hospital within 3 hours of going under and the pain was minimal for 2 days and then non-existent. I couldn't imagine a better surgical team. The removal of the tumor seemed to remove most of my sadness.
April 29, 2016, my surgeon called with the greatest news ever! Margins clear! Lymph nodes clear! No more surgery! I cried with relief and joy. It was an amazing feeling. I'm not going to die...now to wait for my medical oncology appointment scheduled for May 25.
But wait...
May 9, 2016, I got a call that has killed my ability to be happy: ER/PR and HER2 were all negative.
I have since scheduled an appointment for a second opinion, with MD Anderson and I am seeing one of the best breast doctors in the world on June 16. I am both terrified and elated. I will keep you all posted and I appreciate your being here. The ups and downs are so overwhelming. I don't know how to cope on most days, but i have to. Because of my baby. She is now asking to fix me because i'm broken and that she wants magical powers because she needs me. She only senses it as I have no revealed any more than "mommy's sick." It's so tragic. I cannot leave her. Ridiculously depressing. And now i'm crying again.
I have no idea what's going to happen. Chemo is obviously, the next step. I just want to go to sleep until it's all gone.
xo Nona
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Nona,
Welcome to BCO, and thank you do much for sharing your story with us! We know it's such a difficult process, with so many ups and downs, and we hope your next appointment for your second opinion sheds some more light on your diagnosis. You're doing the best you can, and that is enough. We're here for you!
The Mods
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NONYBALONY - Don't worry about a thing, I know it is hard not to at your stage, but I too am triple negative but ILC and I went through all the worrying and looking things up that you are now going through, but you are in a good place in that you don't have lymph node involvement, so that's a plus, you may have to get chemo but it is doable. I have had 2 rounds of AC so far and will be doing my third on Friday and I am getting through it. I have not posted my story on this thread because I thought it was for people who were over their treatment and coming back to tell their story, so I am waiting until I am finished. You are getting all the help you need and getting a second opinion will put your mind at rest. Breast cancer is very treatable these days so I am sure you have many years ahead of you to enjoy your little girl. Best of luck with the treatment.
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Since my first post on May 5th, I am still on the fence with doing chemo. I was scheduled to do chemo yesterday, but my port and the chemo was cancelled by my doctor the same day the port was to go in, in fact I was already in day surgery and had blood work. Apparently, my doctor had gotten feedback from collegues about my case and those doctors felt chemo wasn't necessary for a .4cm, Stage 1a, grade 3 Triple Negative, at the moment clear (surgery, lymph nodes, and PET scan) of cancer. He has requested I see another partner before making the final decision. He still feels I need the chemo due to the fact some micro cells could have slipped through, or that the PET didn't pick up any micro sized cells on the scan. I need to move on this as my last surgery to get a clear margin was March 23.
Anyone have this kind of thing happen?
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Hi lynn - we'd like to suggest you post your question and your story in the Chemo - Before, During and After forum or, you may want to start a new thread in this Triple-Negative forum to get the attention of many members who can weigh in.
Let us know if you need more help!
--The Mods
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LYNNCARR - I am no expert but my understanding of DCIS is that it is not an invasive breast cancer and so would be very much contained in your breast and if your tumour was only .4 cm then I would say that there is very little chance that any of this would have spread any further than the tumour itself. Your Onc would know from your pathology report whether any blood vessels were effected but my gut instinct is that because your cancer was Insitu that this did not happen because that's what Insitu means, it has not spread.. It is always best to go with what your Dr./Onc says and it would very much appear to me like what they are saying is correct i.e. you don't need chemo. Just my humble opinion.
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Nonybalony, you might consider joining our triple negative forum. There are many of us there, some newly diagnosed, some in treatment, and some years out from treatment. Don't feel like you have to read all of the pages, just read a few at the end and jump in with any questions or concerns you have. We are all in this together.
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I rarely go on this site these days because quite frankly, the Internet scares me. However, this site was a comfort and information source to me in those early days of diagnosis, so I think it's important to share our stories.
I was diagnosed in October 2015. I found the tumor myself. I remember going into my OBs office to have it checked, and he said "Don't worry, cancer doesn't hurt. So, it can't be cancer". Well, thankfully mine did hurt, or else I probably wouldn't have noticed it. I had an ultrasound, mammo and biopsy all that same say and found out the very next day it was cancer. At that time, I was 36 years old with a 9 month old and a 4 year old. I have no family history of breast cancer, so this came completely out of left field. I cried for weeks. I felt like my world was crumbling around me.
I started treatment about 3 weeks after diagnosis. I was told that TN tumors respond very well to chemo, so I felt encouraged - almost empowered. I've got this! I did 4 rounds of AC and 4 dose-dense rounds of Taxol. The side effects weren't horrible, but it it was hard to keep up with the kids and work. Thankfully I had a lot of help from family. The tumor didn't shrink all that much with AC, but my onc said that some tumors respond better to Taxol, so I remained hopeful. After the second dose of Taxol, it was apparent that Taxol wasn't effective either. The tumor was "softening" they said, but no shrinkage. I was devastated. Everyone talked about a PCR and how important this was, and I knew that this meant my recurrence risk was high.
I ended up having a unilateral mastectomy in February. I enrolled in a clinical trial doing concurrent radiation and Cisplatin chemo (to prevent local recurrence since negative margins were less than 1 cm). The tumor that they extracted during surgery was 3.2 cm (it was estimated around 3.5 prior to chemo). I finished the trial last month, so for now, so I pray. I do feel like a sitting duck, but God willing, I will end up on the good side of the statistics.
I have been YEARNING to hear survivor examples from women who had chemo-resistant tumors, or did not achieve a pCR. I'm hoping some of those women post their stories to this board - I know it would provide a lot of hope!
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Hi everyone!
I'm so happy to see all the TNBC stories. Being thrown into the cancer world is scary enough but then having all the negativity around TNBC...it's nice to have people to commiserate with!
I was diagnosed in January of this year at age 25. I had found a lump the previous August and felt like it appeared overnight. I went for an ultrasound (no mammo due to my age) and was told everything was fine. About 4 months went by and the lump kept growing. I went back and insisted on another ultrasound and was whisked away to a mammo immediately afterward. BIRADS 5. Biopsy the next week, but that came back inconclusive. The mammo also picked up at least 3 lymph nodes involved. In early January I had lymph node removal surgery and they were able to test those tissues and determine the cancer diagnosis.
I had neoadjuvant chemo (chemo before surgery) and have completed the AC part of it. I am now midway through the Taxol. The tumor responded some to the AC but it has shrunk away completely on the taxol, even in the involved lymph nodes. I will go for a bilateral mastectomy in August- my choice because of TNBC's traction of recurrences. I also have a mass on the bone in my sternum, though I have no sense of if it has shrunk or not. I guess we will see with some scans once chemo is over.
I just got the results of my genetics testing as well. I was negative for 6 of the genes that were tested and came back inconclusive for the CHEK2 gene. I was hoping genetics testing would give some answers on why this happened to me so young, but I guess I will continue the search for answers in other places!
Overall I've been able to maintain a really positive attitude through support of my friends and family, as well as reading the boards here! I totally understand that everyone copes differently, but I refuse to give in to the dark places until it's time.
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Hi,
I'm Jaclyn, 32 yr old Canadian with TNIDC. I was diagnosed March 31 and am in my third week of AC chemo.
My husband found a lump in my upper left breast in November last year but I was convinced it was nothing more than as cyst so I didn't go to the doctors until March 15 2016 for shoulder pain but he referred me to the breast clinic because it looked as if the cyst was about to explode off of my chest.
I went March 17 for what was supposed to be a consult but ended up having a mammogram ultrasound MRI and core biopsy all within 3 hours. I was beyond shocked when the Doctor came up to me as I was waiting for the biopsy and said I've reviewed your tests and I'm 95% sure it's cancer but we will wait until the 31 for the results to come in. Wow. That's quite the bombshell that had been dropped on me. My husband wasn't there because I thought I was having a consult so I had to call him and tell him. Heartbreaking
My AC chemo is 1 every 14 days with self administered Neupogen days 3-10 followed by Taxol and another chemo I don't know. I will have a mastectomy after my chemo then followed by radiation. All in all it should be an 11 month process.
2 rounds of chemo in and I'm feeling great. Still working 8hr days and 6 days a week. Sleeping solidly through the night and still have all my hair(that I didn't shave off in anticipation)
I'm thankful for my family, friends and clients at work otherwise I don't think I'd stay sane. Going to work as a waitress everyday keeps my mind off of it and gives me some exercise too.
I know I won't always be able to work like I am but I try to enjoy it as much as possible.
Being a vegan has helped me keep up my energy levels and knock on wood no illnesses so far. Just mouth sores (might be the costco sized box of oranges I bought!)
This cake is what we had at my Ta ta to my Tatas party, it was supposed to say All the Breast but it got lost in translation.
I hope this post finds everyone happy and as healthy as possible. xx
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Hi .. I'm 57 years old and was diagnosed tnbc on 11/22/2011. I elected to have surgery first and then chemo - there were some eventful moments such as having a pnuemothorax during surgery and then having to be rushed to the hospital 1.5 weeks after first chemo due to breathing difficulties..they had to intubate me which horrible.As best we could figure I had developed an allergy to nsaids so no more motrin or aspirin; I finished treatment with radiation which was not too bad. I then tried to get my head together and now several years later Ive decided to have reconstruction. Ill be having a diep flap for both sides. I met with the surgeon today and it seems I can have it done in a month. I am looking forward to not having to wear a prosthetic! I find all your stories inspirational and Im glad there is forum like this! Thanks.
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Hi Jaclyn and robinjones7, welcome to Breastcancer.org, and thank you for sharing your personal stories here.
Please let us know if we can be of any assistance, we're here for you!
The Mods
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Hello all. I am currently battling TNBC, was diagnosed 3/16/16, I am 36 years old. It took a little bit of time to get my medical team lined up and for the best treatment plan to be determined but thank goodness my journey to recovery is on. My treatment began with a unilateral mastecomy 5/19/16 at Johns Hopkins Hospital and next treatment steps will be determined by the pathology results.
I cannot agree more with the fellow warriors on the site on how important self-breast exams are. I discovered my lesion doing my monthly self-exam (I have an app on my phone that reminds me every month so I don't forget.) The lesion was not picked up in mammograms, so ultrasound and an MRI were needed. As many of you did, upon being diagnosed, I did a ton of research and was ready for chemo and surgery as a start for treatment. However, even though my surgeon oncologist recommended neoadjuvant chemo to shrink the size of the tumor, my medical oncologist pushed back explaining that it could not be determined with 100% certainty if chemo for my triple negative papillary carcinoma was necessary.
Today, I am recovering from surgery and patiently waiting for the pathology results. I am staying positive as the most important part, getting the tumor completely out, is over. I trust my medical team (this is my first rodeo with BC but definitely not theirs) and find relief that they are treating me as an individual/unique case, as we all should be treated. I will let you guys know what happens next, I feel lucky to have found a site with such an active community to turn to for advice and support.
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Welcome, skdc! We are so glad you found us!
--The Mods
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I was just diagnosed triple negative. I will be starting chemo first in a week. I am single and live alone. Have had so many tests a n d everything seems so overwhelming. Any recommendations or any help is greatly appreciated.
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CROBEERTSON66 - What is your diagnosis, and what chemo are you starting, This is all important information for helping with the tips. Could you fill in your profile and make it public and then it will automatically appear at the end of your posts, like mine.
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Hi all...
My story begins in November of 2013. I was 51 and had been anemic for a long time and finally had a colonoscopy. Sure enough, colon cancer. I had a left hemicolectomy, recovered and was on chemo for 6 months - just pills, so I did not get too sick and actually returned to work three months into chemo (I am an ICU nurse). Luckily there was no lymph node involvement. So I thought I was free and clear, but 6 months after chemo finished I had a routine mammogram. It had been 7 years since my last one...I had no family history so did not think it was vital to have them every two years. But the colon cancer scared me and I am glad it made me think about other testing.
I was called back after my mammogram for a diagnostic mammo and ultrasound. At this point I was not too concerned, lots of people have to return because of cysts etc. But I had to have a biopsy, which turned out to be an ER and PR positive tumour in my left breast. I was in shock. I was scheduled for a lumpectomy, but in the meantime had a CT of my chest just to rule out metastases. Incredibly, the CT showed a mass in my right breast, which had been missed on the mammogram. A biopsy was done, and it turned out to be TNBC. So I had bilateral BC, two different types...very rare. Thankfully, no metastases were evident. The lumpectomy was cancelled, and I opted to have bilateral mastectomies. My surgery was in March of 2015, and I then had four cycles of chemo (TC), followed by 28 sessions of radiation. The radiation was only on the left side. My RO had wanted to radiate both sides, but could not figure out how without giving me too much radiation in the centre of my chest. The left breast tumour had lymph node involvement, so that is why the radiation was done on that side.
I am very lucky...there was no lymph node involvement on the TN side. That would have been difficult to treat.
I had more treatment...a hysterectomy and oophrectomies, as a precaution. That was in November of 2015. Five months later I am feeling well - my hair has been growing back, I feel strong and have been dragon boating and working out. I am planning to have breast reconstruction but the plastic surgeon wants me to lose some weight first. It is great motivation! I have been off work during my entire treatment and will be returning soon. I am on Tamoxifen and tolerating it well. My bloodwork is drawn every three months and has been perfect.
It is such a great feeling having it all behind me. I will be having genetic testing later this year...I have a daughter and baby granddaughter and want to know for their sakes what their risks are.
Andrea
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My name is Marilyn and I am 68 years old. I was diagnosed with TNBC in July 2016. My husband had just been through a heart attack in January of that year and I had not gone to get my yearly mammogram because of everything that was going on with him. I had actually thought about skipping it and then decided to go at the last minute. So glad I did. The Women's Wellness Center called me back the very next day and did a second mammogram, then an ultrasound. I knew something was wrong when they wanted to do a needle core biopsy, it was breast cancer. I then had an MRI on both breasts and a second tumor was found in the same breast that had not shown up in the ultrasound. I was told that I had TNBC (Grade 3). I did have an Estrogen Receptor of 7% but this was the only positive hormone. When I sat down with my surgeon she told me that with my diagnoses she recommended a bilateral skin sparing mastectomy followed by reconstructive surgery. She also said she liked to get the chemo out of the way first and told me I would have four treatments followed by surgery. I then had the Sentinel Lymph Node Mapping and a chemo port put in. Good news, it had not spread to the lymph nodes. So off I went to the oncologist, and he told me he strongly recommended that I take the most aggressive chemo plan and not the four treatments. My choice. At first I was dead set against all that chemo but after doing a lot of research about this type of cancer I realized this was my best chance for survival. I had already had a melanoma on my arm about nine years ago. So I agreed to take the more aggressive chemo,4 treatments of Adriamycin (the red devil) with Cytoxan followed by 12 treatments of Taxol. I have to be honest and say I handled the chemo much better than I ever thought I would. I had the mastectomy done on Feb.12th followed by the insertion of the tissue expanders to get ready for the implants. I was told that they got all the cancer so this was the best news ever. I thought the reconstructive part was going to be the easy part and it has proven to be the most horrific part of all. I had four saline injections and decided to stop as I had never intended to go a bigger size just stay the same. I thought I would have the final surgery within a week or two, but no I had to wait almost five weeks. The expanders swell and clamp down so hard you feel like you are being cut into. I am lucky if I get two hours of sleep each night because of the pain, and they will only let you take Tylenol. I am told that once you get the implants this will all change and I certainly hope this is true. However after doing some reading I have since found out that reconstructive surgery comes with its own problems. No one tells you these things up front. After reading some of these posts I am surprised at how each patient is treated in so many different ways. I was never given any other options other than a mastectomy and I trusted my surgeon so I did not seek another opinion. Now I sometimes wish I had. Tomorrow is my final surgery, the expanders come out and the implants go in. I hope I am one of the lucky ones and all goes well.
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Thank you for sharing your story, Peyton3! Could you include a picture of yourself to use with it? You can post it here, or send it to us via private message. Thanks again!
The Mods
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Hi Lisa,
Thanks for sharing your story, ours are very similar. I am curious about the number of Taxol treatments? I had 4 of the AC and am also now on Taxol but only had 4 scheduled. I have heard others that do additional rounds of the Taxol but wonder about the evidence behind it? Maybe you could she'd some light on this? I am Triple negative also stage 3 and heading towards surgery in July. I would appreciate any advice.
TTS.
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Your stories are up and live on the site! Thank you, thank you for sharing your personal experiences. Your words, challenges, inspirations will definitely help others new to this journey.
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I went on the National Cancer Research Center web page and they said that patients that had the low dose 12 treatments of Taxol had better survival rates. My oncologist also recommended this amount. I hope you get this reply TTS because I have a terrible time getting into this web site. Let me know if you have any other questions. I just had my final reconstruction surgery putting the implants in, I am a little disappointed.
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Thank you for your positive words. We can do this!!!
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Today is my 3 yr anniversary from my triple negative diagnosis. I was 56 when I was diagnosed. A routine mammogram found the 1 cm lump. I had a lumpectomy and sentinel node biopsy, which determined it had not spread to any lymph nodes. I then had 6 rounds dose dense Taxotere and Cytoxin. I did have trouble keeping my white cell count up, even with the Nulasta shot I received the day after each chemo treatment. I ended up with fevers around 101, and hospitalized once for a few days for fluids and antibiotics. I had continued to work almost full time, which on hind sight, I probably should have taken more time off to keep me away from germs. Then I had 6 weeks of rads, which wasn't too bad and my skin held up well, using lots of aquaphor cream several times a day. Luckily the radiation center was only a few miles from where I worked.
The mental and emotional part is definitely the hardest part for me during this journey. Aches and pains continue to worry me, and my oncologist has been good about ordering scans when I complain about something, all have turned out clear. I can finally say I don't think about my cancer every day upon waking up, it does get better. I eat better, exercise more and feel healthy and strong. And I'm enjoying my family and grandson to the fullest.
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Thank you for sharing your inspirational story, Elindy! We will add it to the queue for publishing to the website!
--The Mods
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