Late Relapses with Triple Negative Breast Cancer

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JaniceW
JaniceW Member Posts: 18
edited June 2014 in Triple-Negative Breast Cancer
Late Relapses with Triple Negative Breast Cancer
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  • JaniceW
    JaniceW Member Posts: 18
    edited June 2010

    Hi Everyone:

    I was just wondering is it possible for women to relapse from Triple Negative Breast Cancer after being in remission for over 20 years?  Have you ever heard of anyone with TNBC have a recurrence after being in remission for many years?  I ask this question because I've never heard of anyone with TNBC relapsing after they've reached the 5 year mark.

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  • Morgan513
    Morgan513 Member Posts: 664
    edited June 2010

    That's a good question.  I suppose it could happen but it seems like what you have observed is more the norm.

    Lorrie 

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  • cinnamonrocket
    cinnamonrocket Member Posts: 27
    edited June 2010

    I was just told by a research oncologist that the  risk of reoccurrence in triple negative bc drops significantly after 5 years years.

    cinnamon rocket

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  • caearl
    caearl Member Posts: 51
    edited June 2010

    My mother had a recurrence of TNBC 10 years out.  It appeared in her skin, around the breast scar sight and up and over her shoulder.  She responded very well to chemo starting in Jan. and it appeared to disappear by the end of March...then it reappeared, just on her shoulder.  So chemo has started again.  The oncologist feels it could become chronic.  She was stage IV diagnosed Oct 1999 with 13+ nodes removed. ER-/PR-, HER2-  BRCA1-2 -

    Terri

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  • jenn3
    jenn3 Member Posts: 3,316
    edited June 2010

    After 5 years the risk decreases significantly.  However, like my onc said there are no guarantees.

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  • JaniceW
    JaniceW Member Posts: 18
    edited June 2010

    I'm sorry Terry about your mother's recurrence. I have no clue why doctors say that you are cancer  free when you reach the 5 year mark when that is in fact not true at all. I can see now that this disease can return at any time and you never be sure that you are really cured from it.

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  • SoapMaker
    SoapMaker Member Posts: 157
    edited June 2010

    I read some research a couple of years ago where the scientists stated that no one has ever seen a tnbc recurrence in anyone who had made it to 8 years. They said that if you made it to 8 years, you were home free. I see now that it must not be true, with your mom recurring after 10. So sorry to hear that she has to go through this, yet again. Wishing her the very best.

    Where is the cureCry

    www.truefacesofbreastcancer.org

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  • janinvan
    janinvan Member Posts: 83
    edited June 2010

    I had a recurrence after 12 years on my masectomy site....near pectoral muscle/under collar bone.

    janice 

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  • tibet
    tibet Member Posts: 545
    edited June 2010

    Terri

    Sorry to hear about your mom. Was she dx with 13 positive nodes back in 99 or which stage was she dx at the first time, did she get chemo 10 yrs ago

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  • JaniceW
    JaniceW Member Posts: 18
    edited June 2010

    I'm sorry Janice that you have to deal with breast cancer again after being in remission for so long.  I wish nothing but the very best for you. Hopefully one day they'll find a cure for this terrible disease.

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  • JaniceW
    JaniceW Member Posts: 18
    edited June 2010

    I'm sorry Janice that you have to deal with breast cancer again after being in remission for so long.  I wish nothing but the very best for you. Hopefully one day they'll find a cure for this terrible disease.

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  • caearl
    caearl Member Posts: 51
    edited June 2010

    Janice, my heart and prayers are with you, on this new journey, I pray that all goes well. 

    Mom was diagnosed IIIb with 12pos nodes, modified radical Left Breast.  A/C treatment, then just as the hair was falling out, and she was waiting for her white count to go up she found another node in her neck.  It was also positive.Continued the A/C for I think 3 more rounds then on to taxol, and 33 radiation, including a boost.  Six years later she began to have pain and weakness in her left arm.  She was diagnosed with radiation induced brachial plexopathy.  This is a very rare side effect of the radiation that can happen as many as 20 years post treatment, however it is very rare. 1 in 10,000 who have had radiation to the axillary.  She is super special because her case has also developed to the extreme, It took four years, for her entire arm to become paralyzed and a case of Horner's syndrome and paresis to the left diaphragm .  We were never told she was cancer free, just "no evidence of disease".  We were also aware that it could come back although like most, we suspected after 5 years to be less likely. But you know her oncologist had told her that she would know before anyone...and he was right. In looking back, up until about two years ago when her arm became so bad, she had to quit exercising.  We did water aerobics...I have been reading that a low fat diet and exercise are key in helping keep this TNBC at bay.  Interesting. 

    Janice, did your life style change after 12 years NED?  Mom noticed a leathery redness in her scar area, and then she had little bb size nodules on the skin running up to her shoulder and on the upper back of her shoulder.  The cancer arrived weeks after a case of shingles cleared up!! Yet never showed up on any scan.  We had it biopsied, and they confirmed it was TNBC.  She is on Gemzar 1xa week x 3 weeks one week off.

     May your lives be blessed with many years NED.

     Terri

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  • dmoh
    dmoh Member Posts: 20
    edited June 2010

    I recurred in Jan. '09 on the same side after 9 years (and brca negative testing in July '08, clean mri in Sept. '08, and clean mammo in April '08!!).  Circumstances very similar to original diagnosis -- i.e. I found the tumor myself and just "knew" it was cancer, plus it was around the exact same time of year as the first go around.

    First tumor in 2000 was at 12 o'clock position on right side (had lumpectomy, ACx4, Tx4, and 30 rads + 5 boosts).  New tumor in 2009 was at 9 o'clock position.  This time I opted for a BMX and had TE placed (yes, I knew the risks with prior rads, but I just wanted to be done -- that fiasco is another story...)  Did TC x4 and ended up losing one TE in July '09 and had a second recurrence (though, I think it was just a missed lymph node) in Sept. '09.  Did Xeloda and Avastin from Nov.09 - April '10, surgery in Feb. '10 to remove said lymph nodes and a few more.  Am currently doing rads and have just 5 of 28 total tx left!!  I'll be done on July 1st and am looking forward to celebrating my cancer independence!!   I will address my reconstruction next year after waiting the necessary time after rads.

    FWIW, I always thought I would have to face the BC beast again in my lifetime as I was only 32 when originally diagnosed 10 years ago, but I just never dreamed it would be after just 9 years.  I've had some bad crap this last year, but I can finally see the light at the end of the tunnel and am hopeful that this will be the end of this nightmare, if not forever, then at least for now.  It's been over a year of surgeries and treatment and I'm tired, though a lot less angry and bitter these days.

     dmoh

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  • Titan
    Titan Member Posts: 2,956
    edited June 2010

    dmoh..I hope that you will be done with this crap too and very soon!  I'm 50 and that though is still young for cancer I still worry about the 30 somethings...with the young children.

    If it is any help at all a friend of mine was diagnosed at 38 and she is perfectly fine now..10 years later...and another aquaintance is 36 and just done with chemo..and her cancer was very serious..not sure of the detail..any way..she was supposed to have chemo for a year but she was scanned and she doesn't have to have the chemo now.

    Bottom line..there is alot of hope for all of us..

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  • dmoh
    dmoh Member Posts: 20
    edited June 2010

    Thanks Titan.  And, you're right, there is a lot of hope.  When I was first diagnosed in 2000 I was just 32 with a 4yo son & a 2yo daughter.  I am now just shy of 43 and my wonderful children are 15 and 12 now.  It's scary when you have little ones, but even scarier now that they're older and can better understand the risks.  I feel good (excpet for the radiation induced soreness and fatigue) and my kids are doing great.  School ended today and we leave first thing tomorrow (after rads, of course) for my son's lacrosse tournament.  I love being able to do things with them again. 

    Keep hoping and keep praying.

    dmoh

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  • JaniceW
    JaniceW Member Posts: 18
    edited June 2010

    Thanks Titan for your encouragement.  The fear of recurrence is always on my mind and reading about your friends being cancer survivors make me feel that there is hope for me.

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  • JaniceW
    JaniceW Member Posts: 18
    edited June 2010

    Sorry Dmoh that you're having to deal with breast cancer.  Did you have a recurrence or did was it just a new primary tumor?  I ask that question because you said that when you found out that you had cancer again for the second time that it was a new tumor.

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  • Titan
    Titan Member Posts: 2,956
    edited June 2010

    Janice..I've been meaning to tell you that I'm so glad to hear from you again...we didn't hear from you for awhile and I was worried about you! Glad that you have come back to share with us again....You have brought up some very realistic points about breast cancer in the past and I'm glad you are back with us again...

    I think that there is hope for all of us...but bottom line we are all afraid of dying from this crap..there I said it...you just can see from the "stats" that yes women still die of breast cancer...but...we just have to hope that our treatments took care of that for us and that will all be around to see our kids play lacrosse, and we can all be "OLD"...I used to freak about being old but now......well....I want to be OLD! 

    And on another note..if you follow soccer..dang..the USA losing today!   I'm a true soccer mom..with the van and everything so this hurts!   Oh yeah..there is alot going on for us women other than thinking about breast cancer....it really hurt that the USA lost..one year ago I wouldn't have cared...maybe I'm back to living again????  

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  • veejark
    veejark Member Posts: 3
    edited July 2011

    My wife is triple negative had BC surgery last yr and have 4 AC & 4 Taxol with 30 rads & 5 boosts up. Later it went to bone and lever . then she had 3 cycles of Ixempra+Xeloda+Zomata. Then it went to lymph nodes & more  lesion in lever. Now she is on Avastin+ Carbopatin+ Gemcitabine. She has 1 cycle so far. Pl. suggest

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  • tibet
    tibet Member Posts: 545
    edited July 2011

    Dmoh

    Was your recurrence a recurrence or a New Primary? It maybe more likely a new primary after 10 years.



    Veejark, may I ask which stage was your wife dx before recurred?





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  • epgnyc
    epgnyc Member Posts: 101
    edited July 2011

    I had a recurrance of TNBC 9 years after the original tumor.  It was in the same breast and the new tumor was intertwined with the scar tissue from the prior lumpectomy.  I too have read and discussed with my oncologist that chance of recurrence drops hugely after 5 years.  I think it's very uncommon to recur after this period of time so hope you won't worry about it too much.  It's just that there are no guarantees with breast cancer.  Good luck to you.

    Ellen 

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