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Long term survivor examples.

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  • Mercygirl
    Mercygirl Member Posts: 2
    edited January 2014
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    Hi ladies, hold on to your hats! I am a 62yr old , 4 time, yes FOUR time, TNBC survivor. My journey began 23, yes TWENTY THREE, yrs ago!!! I was 39 yrs old with one child which was born when I was 18yrs old. So keep your chin up, your ears and eyes open and your mind on the future. I was sure I had been handed a death sentence all 4 times. But, by the grace and mercy of God, and a great medical team, here I am 23yrs later watching my 9 grandchildren play in the yard, taking care of 2 adorable dogs and a dozen chickens. Life isn't over it just gets a little bumpy sometimes. I'll be glad to answer any questions about my diagnoses and treatments. Feel free to ask.

  • BanR
    BanR Member Posts: 238
    edited January 2014
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    you will pnak! do keep us posted on your progress

    all the best

  • BanR
    BanR Member Posts: 238
    edited January 2014
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    Hi Mercygirl!

    congratulations ... and a very big one on top of that.

    You are a brave lady to go through this 4 times and come out of it too!! Could you share with us a little more about your treatment. 23 years ago...i believe those days there was no chemotherapy too.

    Will love to be in touch with you...you are such an inspiration!!

    May you live a long healthy life...you will be in my prayers always and thanks a lot for sharing your story

  • h0pe
    h0pe Member Posts: 46
    edited January 2014
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    Hello - I am ER/PR+, but I have a very good friend who is a 20 yr (+) survivor. Back when she was diagnosed, they did not test for Her2, but she was ER/PR negative. She had a 5cm tumor and 5 lymph nodes involved. After 4 rounds of AC and Taxol, radiation...she is doing great! She was diagnosed at 42 and is 62 now. 

  • BanR
    BanR Member Posts: 238
    edited January 2014
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    Thanks for sharing this h0pe!! My good wishes to you and your friend for a long healthy life

    Love and hugs

  • Meggy
    Meggy Member Posts: 74
    edited February 2014
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    Mercygirl, your post is so moving, you made me cry.  What an inspiration.  

    I just hit the 6 year mark.  No recurrence in sight.

    Meg

  • BanR
    BanR Member Posts: 238
    edited February 2014
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    good going Meggy! 6 years means the "risky" phase is over..congratulations!! wish you more years of good health...

    you went through neo adjuvant chemo. did you go through more chemo after surgery? did you achieve Pcr?

  • megomendy
    megomendy Member Posts: 63
    edited February 2014
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    My mother is a 30 year breast cancer survivor, but we have no idea if she was triple negative. Do you think there are any records from that far back that we could access? I think tamoxifen was new then and her doctor didnt give it to her.

  • BanR
    BanR Member Posts: 238
    edited February 2014
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    Thats wonderful megomendy!! I wish your mom a long and healthy life and congrats to her on completion of 30 years!!

    Hospitals these days do preserve slides. There are regulations for that. Some preserve for as many as 40 to 50 years is what i hear. do check with the hospital where her surgery was done and in case they have her slide preserved you can get it evaluated. you might get some information which may be valuable for you. did you or your mom get checked for brca1 and brca2?

  • megomendy
    megomendy Member Posts: 63
    edited February 2014
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    I was just checked for BRACA and am negative. My mom never got tested, but two of my sisters were checked after my diagnosis and they are negative. I come from a family of 6 girls, so when I was diagnosed, they were concerned about their probability of BC. My maternal grandmother also had BC, but she and my mother were both postmenopausal. I'll have my mom call her hospital just to check about the slides, on the chance they are available.

  • kalmqu13
    kalmqu13 Member Posts: 1
    edited February 2014
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    So wonderful to read how many survivors there are. When I was first diagnosed in 2007 at the age of 37 it was horrifying. I was always very healthy and fit. I just ended up getting a very bad "cold" so thought because I never got sick but I had a tremendous amount of pain in my left breast.  I had a mammogram the next day which didn't show anything but you could feel a lump.  So I went in for an ultrasound....which lead to a needle biopsy. 3 days later I was told I had cancer....and that it was rare and aggressive. I went in for a PET scan and at that time was told I had a total of 6 tumors. 1 was in my left breast, 4 (2 on each side of my neck-lymph nodes) and 1 "cluster" on the right side of my body close to my liver. I asked my Dr. what my odds were at that time. Mind you he is the most amazing Dr. ever and he looked at me and said he didn't like to give odds. But I insisted because I wanted to know what I was about to go through. He looked at me and said "Kristi I will tell you that 1 out of 10 women survive what you have....and you will be my one!"  Here I am almost 7 years later.....N.E.D. hoping to give other women hope knowing they can do it too. 

    My diagnosis then.... stage IV Triple negative invasive ductal carcinoma- BRCA negative. 


  • StayingFocus
    StayingFocus Member Posts: 1
    edited February 2014
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    What wonderful stories of strength, tenacity and just plain "guts"! I LOVE IT! I am a newbie TNBC survivor, IDC,  almost 2 years, but there was no doubt in my mind that I would be successful with my treatment plan. Plus, having a healthcare team working with you is very important. Congratulations and continued good health to all!

  • sweetpickle
    sweetpickle Member Posts: 185
    edited February 2014
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    I am almost a year NED and I know three long term triple neg survivors locally. Two are eight plus years and the other is almost three years.  Waving to my sister pnak who just was diagnosed as I finish up. How crazy is that?  

  • OneFineDay
    OneFineDay Member Posts: 4
    edited February 2014
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    pnac, seems we have similar diagnosis, and potentially same treatment plan.  I'm a little bit ahead of you. You didn't mention if you got a port.  I did, and I am very thankful. I went through chemo sept through January 3, 2014. I had bilateral mastectomy (I chose the bi  I only had cancer in one breast with one lymph node involved).  My chemo experience was tolerable. Getting he right anti nausea drug is key.  I worked through all the chemo, taking off in the beginning on the day of chemo and the day after.  I soon found what days would be good and bad.  You can pm me through the process if you need encouragement or anything to make the journey easier. I don't get onto the site much as I work full time, but I am always on my email. Good luck, you will do fine, the scariest part is not knowing what to expect.  This is a great site to help you through that part.  My best...

  • Lettinggo
    Lettinggo Member Posts: 18
    edited February 2014
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    Mercygirl, you are a survivor! thank you for sharing with us your story. Can you tell us a little bit more about your experiences with your 4 time brave story?  did the TNBC come back in the other breast? or was a distant recurrence?  what kind of treatment did you receive for each time? Thank you very much. Wishing you a long and healthy life and many many blessed years going forward.  

  • Lettinggo
    Lettinggo Member Posts: 18
    edited February 2014
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    Hi Meggy, you are doing great.   6 years means you are out of the 3 to 5 year danger zone.  Congrats!  I am curious to know why they did the neoadjuvant chemo on you and then did chemo again after surgery.  Did they detect any stray cancer cells? did the tumor shrink with the chemo before the surgery?   Thank you very much.  I just started chemo before my surgery and have the same regimen as you with the carboplatin right now.  think i will have a double mx but do not know if i am going through rads after surgery.   Thank you again and keep doing what you are doing.   Take care.

  • BanR
    BanR Member Posts: 238
    edited February 2014
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    hey everybody!

    lovely to login and read about all you wonderful women who have survived it and also about them who are in NED ( wishing them many many many  years of good health).. congrats kalm, stayingfo, sweetpickl and thanks for letting us know about your friends with tnbc who are 8 years out

    lettingo: is there any test to pick up stray cells circulating here n there? there is something called CTC, but its still under research as far as i know..have they started using it actively in hospitals?

  • allydp
    allydp Member Posts: 361
    edited February 2014
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    I'm 33 and was just dx triple negative a few weeks ago. My paternal aunt is the only one in my family who's had breast cancer. She was 43 when dx with triple negative, grade IIb. She chose to have a single mastectomy and it recurred in the remaining breast 8 years later. She then had that breast removed and is now 71 years old! I spoke with her on the phone a few days ago and it's like it never happened to her. She doesn't remember tumor sizes, grades, or anything. And not because she's forgetful, just because she's gone on to live her life and doesn't dwell on it. She's truly an inspiration and I hope to live as long and as full a life as she has.

  • Lettinggo
    Lettinggo Member Posts: 18
    edited February 2014
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    Hi BanR, thanks for posting and organizing this post. I wish i knew the answer to your question. As a matter of fact,i just posted a question about how oncologists and doctors base their cancer free diagnoses on. many people were telling me it is just by blood tests and physical exams. what is a CTC? Thank you again and take care.
  • Pnak
    Pnak Member Posts: 8
    edited February 2014
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    *waving back* at Sweetpickle, my wonderful Sister.  

  • BanR
    BanR Member Posts: 238
    edited February 2014
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    hope everybody is doing well!

    lettinggo: ctc is circulating tumor cell test. mainly used  in adjuvant setting to measure the response of circulating cells after every chemo session. its still in research phase. 

    we do hear of breast cancer survivors but now that we know that bc is not one disease but a family of various diseases and among them tnbc is the most aggressive with the highest recurrence rates, i really wanted to know how many of us know tnbc survivors in particular.

    ally: thank you so much for posting about your aunt. so good to hear that she is a 30 year survivor. but then how did she find out later that her tumor was tnbc..30 years ago i believe even chemo wasnt given and they didnt have too much idea about the biology of breast cancers. how is your treatment going on? you sure have an inspiration at home!

  • LuvinMyLife
    LuvinMyLife Member Posts: 2
    edited March 2014
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    not very far out, but I'm 13 months out.  One year mark and all is clear. 

  • bak94
    bak94 Member Posts: 652
    edited March 2014
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    kalmqu13 and mercygirl-very inspiring, thank you for sharing! Mercy-I have been diagnosed twice and it is nice to hear that you are doing great after 4 times!

    Allydp-your mom's diagnoses sounds like mine! Diagnosed when I was 36 and then again at 43 in opposite breast. It is nice to hear of women surviving 2 or more bouts of cancer!

    I am coming up on my 3 year anniversary for my second diagnoses and just passed the 11th anniversary from my first diagnoses of stage 2b triple neg.

    Love the stories-keep em coming!

  • MaryGlykeria
    MaryGlykeria Member Posts: 3
    edited March 2014
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    Thank you for starting this blog. Last year, 2013, age 63, went through the usual chemo (AC and Taxol total 8 rounds, ) Lumpectomy, radiation 36 rounds, BRACA neg, Stage II, 2 nodes involved. Hearing positive stories helps a great deal as the net seems to bury us and is filled with gloom and doom. Getting back the joy of living is tough. I used to see the glass half full, now half empty. I hope to write on this blog in 5 years and say it has not come back!!!I will say I spoke to 2 long term survivors as the internet scares the shit out of you.(Through SHARE)  Also, my sister has a neighbor who is an 8 yr survivor and eats, drinks etc. and totally ignores recommendations for prevention. With all of you, I don't know how everyone chooses lumpectomy vs. mastectomy . The chemo significantly shrunk the mass, so I chose lumpectomy .

  • MaryGlykeria
    MaryGlykeria Member Posts: 3
    edited March 2014
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    Thank you for sharing. This is so encouraging.

  • Mikesgirl17
    Mikesgirl17 Member Posts: 24
    edited March 2014
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    Hi.  I just found this group.  It's nice to see something positive about tnbc.  I have my last chemo on Monday.  YAY!!!!  Then about a month off and I will start rads.  I was diagnosed with d.c.i.s. when I was 34. (2007)  I had a double mastectomy because I never wanted to worry about cancer again.  No rads or chemo.  They actually sai I was cured.  Go live my life.  this wouldn't happen to me again. 6 years later, almost to the day, I was diagnosed with tnbc in the same spot of my initial bc.  The doctors were in shock.  My margins were clear and wide.  The only explanation they had was that one cell survived and got outside the breast tissue during the biopsy.  It only takes 1 cell.  I wish I had rads done then, but that wasn't the protocol.  The bilateral mastectomy should have taken care of it.  I found both of my bc myself.  I am like my own mammogram machine.  This second time, the doctors couldn't even feel it.  I had to take there fingers and show them exactly where it was and press down hard.  They thought it was scar tissue.  Anyway, we have to be vigilant about self exams.  I haven't thought about what it means to have tnbc since I started chemo.  I just focused on surviving through the chemo itself.  I find myself getting depressed again, because I've been looking at blogs with tnbc as the topic and it's so scary.  I can't live like that.  I need to stay positive and know, not hope, that I am one of the lucky ones that will survive.  I have no other choice.  If I think ANY other way than I won't be able to truly live.  Stay positive ladies.  God bless us ALL.

  • Lettinggo
    Lettinggo Member Posts: 18
    edited March 2014
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    Mikesgirl17, so sorry that you are going thru this.  but now that you are doing chemo it should be effective against the cancer cells.  My question for you is: did you have reconstruction for both breasts and then the cancer came up in the reconstructed breast? do you know if there was breast issue left in the mastsectomied breast or on the chest wall that made the cancer grow back into a lump amidst the implants?  the DCIS you had in 2007, did they say it was TNBC as well or a different form of BC?  stay positive - that is the only thing we could do.  God bless you.  I feel that i could identify with your story because i found a lump in 2008 and had a mamogram where they said they did not find anything in particular and i did not push and now 5, 6years later i found myself dxed with TNBC stage II.  

  • maryna8
    maryna8 Member Posts: 1,824
    edited March 2014
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    Mikesgirl17, Congratulations on finishing chemo Monday!  I will start mine on Tuesday.  So sorry yours is a recurrence, I am surprised they didn't do chemo the first time.  They told me even though I had clean margins chemo was necessary in case anything had escaped into the bloodstream or elsewhere.  I found my own tumor too, after a normal mammogram in Sept. and a physical exam in Dec. Self-exams are important, although with tnbc I was told the tumors can come back anywhere. But, Big but, they also might not! I am happy your chemo is behind you, and you can go on with your life.

    You are so right about staying positive, I am still struggling with that, I find it much easier to be so in the mornings when I am not tired!  

    Best wishes to you and yours!

  • Carol99
    Carol99 Member Posts: 5
    edited March 2014
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    hello, I'm so grateful to have found this discussion group.  You ladies are truly inspirational.  The internet is freaking me out!  I'm trying to stay off it in regards to TNBC.  

    I finished chemo on 2/10, I was thrilled to be done but now I think, was it enough? I'm having a hard time not thinking about reoccurrence, I feel like I'm always thinking of it coming back somewhere else in my body.  My MO said I've done everything I can to reduce my risk and I just need to figure out how to go on with my life.  I'm working on getting back to exercising & eating healthy but when it gets quiet all that's on my mind is this going to come back.

    Hey Mikesgirl, good luck tomorrow!  

  • kathy1819
    kathy1819 Member Posts: 1
    edited March 2014
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    I was 46   and diagnosed with TNBC in july of 09, I had stage3 and 7 positive lymph nodes.  I had a double masectomy and all my lymph nodes removed and my ovaries removed, I started chemo two weeks after surgery.  I never new it was TNBC until I almost finish chemo.  My doctor said it was very aggressive and they would hit me hard with chemo and radiation.  I believe I am cance free and I plan on living a very long life.  Of course after radiation I was on the computer and reading about the prognosis of TBNC and all it did was scare me so I decided to stop

     reading forums on the computer.   I havent been on for a couple of years. I decided to not live in fear and give it to god.  Im grateful for each day. Whatever negative living I  did before I had cancer I dont do now. My reseach has made me proactive with a holistic approach to living a clean life. I also found out I have a double gene mutation, which means my body does not methylate toxins. Its rare but Ive read their are other TNBC who have the double mutation also.  I believe this could very well be the cause of my cancer.