Fill Out Your Profile to share more about you. Learn more...

Long term survivor examples.

Options
145791013

Comments

  • hotrodgreg
    hotrodgreg Member Posts: 7
    edited January 2015
    Options

    Hi Cara,

    I just now read your post about your sister, I hope all is well as you get this.

    My wife's story: November 2013- Initially diagnosed TNBC stage 2b. They did a needle-core biopsy and told us her tumor was about 2cm. They did sonograms or ultrasounds (forgot which) on her lymph nodes in her armpit and they came out with everyone excited saying they were "clear". They scheduled her for breast conserving surgery. During surgery it took longer than it was supposed to and I grew concerned. The surgeon finally came out about an 1 1/2 hr. later than planned and stated "he just removed a tumor the size of a doorknob" and 12 lymph nodes, 10 of them malignant. Come to find out the tumor was 10cm and the path report stated some of the nodes removed were very large and grossly involved. That changed her staging to 3b I believe it was. She had ignored her own health the last couple of years while caring for her mother who was dying of stomach cancer of all things. She did have a good surgeon and had clear margins. She did the dense dose A/C first regimen of chemo and taxol/carboplatin in the second round; due to low white blood count they had to space it to three week intervals but then she didn't have to take the Neulasta. She celebrated her first anniversary last November and is doing great. The oncologist told her, given her staging she was high-risk of recurrence but told her it appeared she is NED and to consider herself healed and to go on with her life. Obviously key is the positive response to treatment.

    Greg.

  • tanyah
    tanyah Member Posts: 9
    edited January 2015
    Options

    So nice to read these survivor stories...it's easy to get lost in the not so happy stories.  My family is in desperate need of a lot of hope.  My Mom was diagnosed with breast cancer in 1986 at Age 38.  She had another primary cancer in the other breast at Age 42.  She is now a 28 yr survivor about to celebrate her 67th birthday.  They did not test for triple negative back then but I am very suspicious.  But she's facing a new battle.  I am 37 and was diagnosed with triple negative breast cancer in October.  I had a lumpectomy in November and started chemo in December.  My 4th AC is on Friday and I will have rads and a bilateral mastectomy after this.  All goes well so far.  I also have a twin sister who had a clear mammogram in November following my diagnosis.  Last week, she too was diagnosed with triple negative breast cancer after a biopsy on a 5cm lump and very large lymph node.  She was 34 weeks pregnant.  They induced labour over the weekend and yesterday she gave birth to the most beautiful 6lb 1oz baby boy.  She starts chemo on Saturday.  I am so happy to be able to provide her with some advice etc since I am slightly ahead of her in the process.  But my heart breaks for that precious baby boy.  Long story short, I needed to read some good survivor stories tonight and you ladies provided that.  Thanks so much for coming back and spreading hope.  I will certainly pay it forward and do the same after my sister and I pass all the milestones we are so looking forward to.     

  • IslandGirl50
    IslandGirl50 Member Posts: 12
    edited February 2015
    Options

    I am a 3-1/2 year TNBC suvivor! I get yearly MRI's and meet with my oncologist every 6 months. MRI is the only monitoring that is done. Oncologist wants me to get a mammogram on my reconstructed breasts but I refuse.

    Diagnosed at 50.

    Bilateral mastectomy with recon July 2011. I had dense dose AC & Taxol. No radiation. It took 5 surgeries to complete the recon process (infection, defective tissue expander, replacement of tissue expanders). Am I happy with the reconstruction? Not really but at least I look decent in my clothes (still have to wear something in both sides to fill out the bra) and I AM STILL ALIVE.

    I admit that sometimes the diagnosis of TN can weigh on my mind. But, I am determined it isn't going to rule my life. I am happily married to a man that loves me, a healthy son and I have a 5 year old granddaughter. Life is good!

    Tanyah - I wish you and your sister the best. Your sister has a tough road ahead of her with a newborn.

    All of you are such an inspiration. Thank you!!


  • BanR
    BanR Member Posts: 238
    edited February 2015
    Options

    Wonderful reading this thread on and off It speaks of much needed hope and positivity!

  • Beachbum1023
    Beachbum1023 Member Posts: 364
    edited February 2015
    Options

    Good morning all, I am not yet a long term survivor, but I want to be! I have completed AC/T dose dense, a modified radical mastectomy, and I am currently in rads, completed 10 of 28. I am triple negative Stage IV. So I have a uphill battle, but fight those battles one at a time. We never signed up for this, but we all learn so much about who we are, that we do fight and go on with our lives. One day at a time. I hope to revisit here often, for a very long time to come. So many of you have won, I hope to say the same!

  • windgirl
    windgirl Member Posts: 208
    edited February 2015
    Options

    just wanted to share another positive story. My aunt got hormone negative BC over 20 years ago around age 50. I say hormone negative as she was not tested for her2 in those times. She had multiple tumors in both breasts of idc, she also had ilc, and she had a lot of node involvement. She had a very drastic mastectomy (think they even removed some muscle), nodes removed, and she had chemo. No radiation or other drugs after. She has not had a recurrence and has been living a cancer free life for over 20 years now. She did make some lifestyle changes, quit smoking and drinking, early retired as she had the ability to (she is a doctor and had a stressful job), started meditating daily, and made some dietary changes (mainly due to smell/taste changes after chemo). Not sure if any of this helped but we are all very happy she has survived.

  • Tinkerbells
    Tinkerbells Member Posts: 53
    edited February 2015
    Options

    hello beautiful ladies! I'd like to add 2 friends of mine to this list!

    One was diagnosed with tnbc at the age of 35- no idea of size but know no nodes- she is healthy and NED 15 years later! She is brca + and had ooph when she had implant exchange.

    Another friend was diagnosed 6 years agowith tnbc at age 37- again- can't tell you staging- but she is healthy, NED and has beautiful long hair.

    There are many survivors out there- we need to keep sharing when we hear!


  • suladog
    suladog Member Posts: 837
    edited February 2015
    Options

    tanyah,

    Wanted to share another story. Most of my time is on HER2+ boards because that's what I'm dealing with now, but looking over my MOs latest report on my pathology it states that the pathologists now believe my previous breast cancer back when I was in my 30s, was Triple Negative..... That was 25 years ago when they didn't even test for that! At the time they did know I was ER negative and my pathology was very messed up, grade 3 etc. I had a mastectomy and chemo and even then they gave me a "poor prognosis".....yet here I am, 25 years later. So, in my humble opinion,there's definitely life after tnbc.

  • moderators
    moderators Posts: 7,900
    edited February 2015
    Options

    These stories are so great to read, we thought we'd share one too.

    Writer Pat Prijatel tells her story in a BCO podcast. Pat was diagnosed in 2006 with early-stage triple-negative breast cancer. She had surgery, chemotherapy, and radiation, and is now healthy, fit, and cancer-free.

    You can listen to her story here: Hope after TNBC Diagnosis

  • netty46
    netty46 Member Posts: 68
    edited February 2015
    Options

    They did a study on CMF chemo on TN and they found it really does a good job . Many of the long term survivors were on this regimen . I was onit also in 2000.

    If you google it you can find it .

    Congrats !

    I once posted this comment and sone were offended . Well here's the proof

    Classical cyclophosphamide, methotrexate, and fluorouracil chemotherapy is more effective in triple-negative, node-negative breast cancer: results from two randomized trials of adjuvant chemoendocrine therapy for node-negative breast cancer.

    Author

    Journal

    J Clin Oncol. 2010 Jun 20;28(18):2966-73. doi: 10.1200/JCO.2009.25.9549. Epub 2010 May 10

    Abstract

    PURPOSE: Retrospective studies suggest that primary breast cancers lacking estrogen receptor (ER) and progesterone receptor (PR) and not overexpressing human epidermal growth factor receptor 2 (HER2; triple-negative tumors) are particularly sensitive to DNA-damaging chemotherapy with alkylating agents.

    PATIENTS AND METHODS: Patients enrolled in International Breast Cancer Study Group Trials VIII and IX with node-negative, operable breast cancer and centrally assessed ER, PR, and HER2 were included (n = 2,257). The trials compared three or six courses of adjuvant classical cyclophosphamide, methotrexate, and fluorouracil (CMF) with or without endocrine therapy versus endocrine therapy alone. We explored patterns of recurrence by treatment according to three immunohistochemically defined tumor subtypes: triple negative, HER2 positive and endocrine receptor absent, and endocrine receptor present.

    RESULTS: Patients with triple-negative tumors (303 patients; 13%) were significantly more likely to have tumors > 2 cm and grade 3 compared with those in the HER2-positive, endocrine receptor-absent, and endocrine receptor-present subtypes. No clear chemotherapy benefit was observed in endocrine receptor-present disease (hazard ratio [HR], 0.90; 95% CI, 0.74 to 1.11). A statistically significantly greater benefit for chemotherapy versus no chemotherapy was observed in triple-negative breast cancer (HR, 0.46; 95% CI, 0.29 to 0.73; interaction P = .009 v endocrine receptor-present disease). The magnitude of the chemotherapy effect was lower in HER2-positive endocrine receptor-absent disease (HR, 0.58; 95% CI, 0.29 to 1.17; interaction P = .24 v endocrine receptor-present disease).

    CONCLUSION: The magnitude of benefit of CMF chemotherapy is largest in patients with triple-negative, node-negative breast cancer.






  • suladog
    suladog Member Posts: 837
    edited February 2015
    Options

    Netty46,

    Yep I was 1cm node negative, ER-, and I got CMF., which is likely why I'm still here. My mo at the time said had I been in 6 mo earlier I would have received no chemo since it was so small and node negative. But at the time I got sick in early 1990 they decided to try chemo on people like me.I've had 25 perfectly healthy years until a 7mm node negative ER+ HER2+ breast cancer in my remaining breast popped up. I am now doing Taxol/ herceptin for that

  • netty46
    netty46 Member Posts: 68
    edited February 2015
    Options

    I got Breast cancer in same breast again in 2012.

    Clear nodes again . This time cytoxin and taxotere and yes radiated again .


  • JJ62
    JJ62 Member Posts: 36
    edited February 2015
    Options

    Five years out. Doing great despite paranoia with every ache and pain. Snowshoeing, cross country skiing, and appreciating every day

  • swinsatt
    swinsatt Member Posts: 1
    edited February 2015
    Options

    I was diagnosed triple x in Jan 2004. Three tumors in right breast. One was 2.5 centimeters, the other a bit smaller and the third was tiny. I had a complete mastectomy and did six months of the classic chemo. No radiation. That was 11 years ago. My oncologist released me two years ago. I still have my yearly x ray and see my surgeon once a year.

    The first few years are not easy. Every ache, every pain....had a scare with all the other reproductive cancers and had to undergo tests and the waiting but that turned out to be another condition completely. Still went ahead with the hysterectomy in part so I wouldn't have to worry about those other cancers. One worry at a time thank you very much!.

    I remember well passing that five year mark...and then the eight year mark. I felt blessed. So will you.

    As time goes by I think less and less about it. In fact there are days when it doesn't even cross my mind.






  • suladog
    suladog Member Posts: 837
    edited February 2015
    Options

    swinsatt,

    I know the feeling . My mo saw me every three months for years and every ach pain etc. I run and I had a bad scare when they found a something on on my bones 3 yrs out, one mri later it was the result of a fracture falling when my dog saw a cat and dragged me across a neighbors lawn

  • Luah
    Luah Member Posts: 626
    edited February 2015
    Options

    netty: If I'm reading that summary correctly, the study proved that CMF chemo (versus no chemo) showed greatest benefit to TN patients; there was less benefit to hormone-/Her2+ patients and no benefit to hormone+ patients. I don't think it says much about the relative merits of different chemo regimens (such as TC, FEC or AC now in use), but it's good to know that CMF did its job... and obviously there are many survivors out there as a result.

  • TripleNegPDX
    TripleNegPDX Member Posts: 1
    edited March 2015
    Options

    It's been 10 years 4 months since my original diagnosis, I was 28 then. I do not define myself as a young BC triple negative survivor. Instead I am a mother, wife and entrepreneur living life to the fullest. Life presented me with some scary obstacles but it has also given me a wonderfully blessed life filled with amazing people and experiences. Trust and believe that there is a long life beyond TNBC. Cheers to you all and to a long life that you can fill with dream worthy experiences. Hugs.

  • moderators
    moderators Posts: 7,900
    edited March 2015
    Options

    Hi TripleNegPD, and welcome to BC.org! Your words are really inspiring. Thank you for posting and introduce yourself in this wonderful and supportive community!

    Best,

    The Mods

  • allydp
    allydp Member Posts: 361
    edited March 2015
    Options

    TripNegPDX - thank you so much for such an inspiring post. I was dx last year at 33 and hope to feel the same as you in 10 years!

  • SlowDeepBreaths
    SlowDeepBreaths Member Posts: 6,702
    edited March 2015
    Options

    TripleNeg, thanks for your encouraging post. Welcome to BCO!

  • Vicklepickle
    Vicklepickle Member Posts: 1
    edited March 2015
    Options

    Not sure if 5 years is considered long term, but I was diagnosed Triple Neg. Breast Cancer in 2009 - went through chemo, double mastectomy, and here I am! I have 2 little boys, now 8 and 11 and they are my motivation. It can be hard to battle the fear that it will someday reappear - but it also can intensify your focus to live on purpose and really live the way I want to live. I don't care any more what people think of me...I just do what I want. I have had such a great 5 years, and I will continue to appreciate my life. I also try to take control of the things I know will have a healthy impact (yoga, eating well, excercise, stress reduction). I think this IS a great site, and hearing about others getting through this horrible disease and living great lives gave me hope. So I wanted to share my experience. Good Luck and keep thinking positive!!!

  • moderators
    moderators Posts: 7,900
    edited March 2015
    Options

    Vicklepickle, welcome to our community and many thanks for sharing your experience!


  • ninjamary
    ninjamary Member Posts: 67
    edited March 2015
    Options

    I needed these posts today. It took awhile to find any triple negative positive stories. My fear is the unknown. I've just started chemo (that was my fear last week/month) and now I'm worried about the future. I know I shouldn't, but it's just the way my brain works. I hope more survivors post their stories and how they get through after treatment. Thank you all.

  • Redporchlady
    Redporchlady Member Posts: 15
    edited March 2015
    Options


    ninjamary, I know what you mean.  I went looking for TNBC survivors too and also met some here in my home state which gave me HOPE that we can fight this.  It was such a shock when I found out about TNBC that I was scared.  My cycle of events is a little different then your's but I just finished 5 months of chemo and it seemed like a long winter but hard to believe that in 3 weeks I will have surgery and hope to find that all the chemo has done it's job.  Clinically they can no longer feel any of the lumps but praying that the ones we could not feel are also gone!  Then on to chemo!  Good luck and be strong.  There are days I cried but it also helped me to get back up and keep going. 

  • SlowDeepBreaths
    SlowDeepBreaths Member Posts: 6,702
    edited March 2015
    Options

    Vickie, Welcome to BCO and thank your for sharing your story!

    Red, Best wishes on your surgery. Sending good thoughts for a pathologic complete response for you!!

  • Carol99
    Carol99 Member Posts: 5
    edited March 2015
    Options

    please keep the positive stories coming ladies, they are inspiring & appreciated! 1 year down for me, hoping for many more

  • MicheleS
    MicheleS Member Posts: 196
    edited March 2015
    Options

    Hi everyone-- I'm 6 1/2 yrs out. :) I don't know if all of my stats are updated but I did AC+ T (AC was dose dense and T was weekly). A also got Avastin and was on the bisphosphonate trial. I had both breasts removed and delayed recon. Had my ovaries out prophylacticly. Was 36 at dx and was terrified that I wouldn't see my kids grow up. Oldest is now in college and the "baby" is 10. :)

    I rarely come back to BCO bc I try to keep the worries at bay (yes, they are still in my head) but saw this thread and wanted to pay it forward.

    Y'all can do this! TNBC is not a death sentence. (knocking wood feverishly!!! Don't want to tempt fate!!)

    xxoo

  • ninjamary
    ninjamary Member Posts: 67
    edited April 2015
    Options

    Michele S,

    You are f'n awesome for posting that!!! Thank you!

  • SlowDeepBreaths
    SlowDeepBreaths Member Posts: 6,702
    edited April 2015
    Options

    NE....wooo hooo for 1 year!! I'm about a year and 4 months out from when they cut the beast out of me!!

    Michele, Thanks so much for checking in. Six years is awesome!! Here's to many more!!

  • MicheleS
    MicheleS Member Posts: 196
    edited April 2015
    Options

    y'all are sweet.

    Also wanted to add that although I was officially staged as I, they found another smaller primary at the mastectomy. That was *supposed* to be a very bad sign. I was certain is be "pushing up daisies" within a couple yrs.