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Triple Negative BC & Older Women

tos
tos Member Posts: 14

I have been diagnosed twice with triple negative breast cancer.  Ages 56 and 60.

The nature of this subtype is that approximately 2/3 of those diagnosed with tri neg are under 40 so it is hard finding women over 40 and above with this type of breast cancer.

 Anyone here with tri neg?

Love this forum,

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Comments

  • Wink333
    Wink333 Member Posts: 20
    edited March 2009

    Dear galnok,

    I have a hard time considering myself an older woman but guess I need to face the fact that I am getting there. I am much older than a lot of the lovely women stricken by this disease.  I am older but my kids were only 11 and 14 when I was diagnosed. They were the very first thing I thought about when I heard cancer. I thought, "what will they do without me".  A very conceited thought actually. I was diagnosed TN in Feb 2007, a month before my 51st birthday.  I actually received my path report on my 51 st birthday. Happy Birthday to me, the same day I spent the evening in the closet with an unusual spring tornado hitting the town, thank goodness 7 blocks away from my little closet. 

    Things have looked up since then. I had a left mastectomy, finished 4 DD AC and 4 DD Taxol, then 32 Rads. So far my blood work has all been good but I hate waiting for blood work to be the only indicator of disease return. I have developed mild to moderate lymphedema in my left arm, still get wiped out easily if I try to live my "old" normal life.

    You said you have been diagnose twice TN. So the second time was not considered a local recurrence or a met? I also see somewhere else where you stated that 85% of TN have the BRCA 1 defect. I don't have enough female relatives for family history of BC but all sorts of other cancers. I've been toying with the cost of the testing since insurance won't pay for it without family history and since I was 50 at time of dx. Maybe I should go ahead and get tested, for my daughters sake also.

    Anyway, another TN here and older than 40.

    Wink (Elaine)

  • JudyO
    JudyO Member Posts: 18
    edited March 2009

    My sister-in-law was dx about 3 months after me. She was 62 at the time of dx and is triple negative. She was surprised at the dx. First she had read triple negative is for younger people, second occurs often in black women (she is white) and is often BRAC gals (she has no history in her family of any cancer...mother died late 80s and Dad is 99 going strong...she has 3 sisters and numerous family females with no cancer history). While I was doing rads the lady before me was in her 70s with triple negative. Also she said no history in her family of any breast cancer, she was a first. I wonder if the triple negative we are seeing in the "older" folks is a different kind. After all triple negative just means not positive for ER, PR or HER. I bet there are many variants in this group.

  • tos
    tos Member Posts: 14
    edited March 2009

    Hi Elaine,

    I thought I went back and corrected my 85%, hope so because I had the numbers turned around.

    It is according to one study I am quoting from, ASCO 2006,  approximately 90% of the BRCA 1 mutations that are triple negative. 

    The first time I was diagnosed I was 56 and there was just a whisper, this was mainly in 03 during treatments of anything to do with brca testing and I was not told I had triple negative bc.  I did have a copy of my path but for unknown reasons did not go any further in my own research.

    Then about a year later after treatments I got out my path and got online and lo and behold I found out exactly what I had been diagnosed with and then began spending alot of time trying to find w/o much luck any good information for our kind of breast cancer.

    Then in Jan of 07 my 39 yr old daughter was diagnosed w/multi tumors in one breast.  One was er+ and the other found by an mri was triple neg.  Along with my devastation at her being diagnosed little alarm bells started going off because most of my family has been taken because of this horrible disease called cancer.  Then one month later I am diagnosed again on the other side, new primary, triple neg, did a double mast and we then did the brca testing.  I was now 60 yrs and counting.  I tested positive for a brca1 mutation and both of my daughters now also have been tested and have my mutation.

    My only sibling, a sister 51, tested negative for the brca 1 mutation but just recently was diagnosed with CML Leukemia so this has all been so heartbreaking.  It is like cancer will not let my family alone but we are determined to fight back hard as we can.

    This information is so important to know for you and your children.  It can pass thru a man to their children so I would suggest you consider genetic counseling to see if you would qualify for the test.  http://www.facingourrisk.org is the place to go for excellent info re this testing.

    I don't feel older either atleast in my mind.  The chemotherapies and rads/surgeries, CHF I was so lucky to have obtained thru getting Adriamycin and dealing with MRSA during treatment in 07.  The side effects that linger, the Peripheral Neuropathy that only worsens, that's the tough part but doable and I can't complain.  A little chemo brain now and then but the younger ones have that also.

     I also cannot stress enough how strongly I feel about our being our best advocate and ladies please get copies of everything.  Your results for your bloodwork, path reports, scan reports, go over them.  From my years of dealing with this plus what I read in this forum and the TNBC forum there have been too many things not said nor told that might be important and this needs to change.  Educate and be your advocate, it is the best we can do for ourselves.

  • ddlatt
    ddlatt Member Posts: 39
    edited March 2009

    i was diagnosed in september 2008 at age 54, triple negative. my biological mother and grandmother both had breast cancer and died when it spread to the bone. i have not had genetic testing yet, but plan to.

  • tos
    tos Member Posts: 14
    edited March 2009

    JudyO I bet you are right.  They are calling us a subtype but they say there are subtypes within subtypes, good grief, I just think they just don't know.  Obviously they have alot of work to do and thank heavens they are getting with it finally although too late for those who are suffering the most.

    I spend alot of time in the TNBCFoundation forum and I get a feel of about 2/3 under and around 1/3 over 40 which seems to be their cut off line.  We have had alot of women post over 50, white, no history, there is alot to do.

    Because they are only just beginning to dig in this could all turn on a dime.  Wish they would get busy.

  • tos
    tos Member Posts: 14
    edited March 2009

    Ddlatt,

    Good glad to hear you will be testing.  You do have the family history to raise concern. 

    I am so sorry you lost your mother and grandmother both to breast cancer.  That really hurts, I also lost my mother at 46 to ovca and her mother died very young from breast cancer so I never even got to meet her.

    I so hate this disease.

  • sher
    sher Member Posts: 76
    edited March 2009

    My local recurrence in July 08 (same exact spot) then age 59 but have since turned 60, was TN.  The original diagnosis 8 years earlier, was ER/PR+ Her2-.  

  • ddlatt
    ddlatt Member Posts: 39
    edited March 2009

    dear gainok  - i'm adopted, so i never knew my biological mother or grandmother. i only found the family in 1997 when the adoption home told me my birth mother had died, after years of trying to get in touch with her. but i did meet her children - four brothers and a sister. my birth sister is 60 years old this year and has NEVER had a mammogram because she's in denial and so afraid of breast cancer. she has two grown daughters. i have tried everything i can think of to get her to get her mammogram, but she's too afraid.  i found out that my birth mother, who had no insurance, didn't get any treatment for her BC until Medicare kicked in at age 65, and by then it was way too late and she died soon after that.  tragic and foolish.

  • rumoret
    rumoret Member Posts: 45
    edited March 2009

    My mother was dx at 69 years old with triple negative breast cancer. She thinks she had a great aunt who had breast cancer, other than that she is the first in her immediate family of 5 girls and 5 boys. None of her sisters have been dx with breast cancer. My mother is the oldest of the 10 children.

    My mother was dx in 1999 and is still going strong. My father was adopted and I do know that his birth father and mother lived into the 90's. I am interested in finding out about my Dad's birth grandmother.......just in case breast cancer was on her side. My dad was dx with prostate cancer in his early 70's.....but died of COPD or asbestos contamination from Navy Career.

    Terry 

  • ravdeb
    ravdeb Member Posts: 277
    edited March 2009

    I was diagnosed with triple neg when I was almost 51 years. old. I don't have the BRACA mutations. I was diagnosed in Sept of 2005. No more signs of it so far!!!

  • welovebrains
    welovebrains Member Posts: 1
    edited March 2009

    Hello,

     I'm new to the group, my name is Pam.  My mother-in-law was diagnosed last Jun 08 with IBC TN Stage 3B.  She's 62 years old, underwent 2 types of chemo treatments and 12 weeks radiation between July and December 08.  And the darn cancer still wouldn't shrink.  In January she had surgery to remove the tumors and breasts w/ plastic surgery to cover the area.  She remained in the hospital for 38 days only to discover last week that she has 1 confirmed new tumor (the size of a grape)  and 2 areas unconfirmed (1 under her armpit and in lung). 

    In two weeks she will start a round of Carboplatin-Gemzar chemo treatment.  We wonder if anyone had information they could share about the success, side-affects, alternative treatments you've experienced.  FYI -we are in the WDC area.  Thank you

  • lrm216
    lrm216 Member Posts: 534
    edited April 2009

    I'm Linda, just turned 62 at my diagnose in February, 2009 with IDC, triple n.  No family history at all of cancer - I am the first and where this triple n came from, God only knows, but I feel doubly attacked!  Just had lumpectomy 3 days ago and doing well - will see BS this coming Weds for 1 week check and then off to the onc I would suppose.  Wishing you all well-

    Linda

  • texasrose
    texasrose Member Posts: 14
    edited March 2009

    I was just diagnosed at 47.  I am two years postmenopausal though.

  • tos
    tos Member Posts: 14
    edited March 2009

    The studies/research for this disease are always based on the age 40 and under.  Does this concern any of you?  Do you feel this would apply to you also or are you curious what the picture looks like for you?  Are our concerns the same as those of the younger women?

    Anyone find anything on older women and TNBC and if so could you provide a link.  I have been looking for a long time.

  • sher
    sher Member Posts: 76
    edited March 2009

    I agree galnok about most of the TNBC information being for younger women.  I've also looked long and hard for information on local recurrences that are TN when the original tumor was ER/PR positive and what if anything that might have to do with risk calculations/prognosis.

  • neela
    neela Member Posts: 1
    edited April 2009

    hi i am new and recently my mom has been dx with bc triple negative with 10 nodes. she will be starting her chemo from apri 16th onwards. anyone going through the same and if u could share ur experience would be helpful for her.

    neela

  • ravdeb
    ravdeb Member Posts: 277
    edited April 2009

    I can't find the exact article, but Constantine (known as Edge) wrote once that those who were diagnosed with triple neg before the age of 50 often and most likely have the more aggressive type that is basal. Those who were diagnosed after age 50 usually do not have this type and thus it is likely that the disease will not spread. Usually with TNBC if it has not spread within the first 3 -4 years from diagnosis (and you've done chemo and rads with lumpectomy or chemo and mastectomy) it will not recur. He even said that after 4 years the chance of recurrence drops well below those who have other types of bc. And..after 8 years it's highly likely that you will never get it back.

    However...this is from memory and I can't find where he said it.

    I'm over 3 years out since diagnosis and am feeling confident I'll be okay..

  • rumoret
    rumoret Member Posts: 45
    edited April 2009

    Deb,

    You are correct.....I read it just the other day on http://www.nosurrenderbreastcancerhelp.org

     Somewhere on that website he went into great detail trying to explain it. I remember thinking of my mother who was dx at 69 with triple negative breast cancer and is now 79 years old this May 7th.

    Should all women who are dx with triple negative breast cancer find out if they have the Basal Type? I believe my friend would have liked to of known that......maybe she would have decided to learn more about her type of breast cancer and maybe would not have ignored that nagging cough she had for sometime. Also...I think my friend might have made some Life Changing Goals if she would have known her risk better. She was TOTALLY shocked when she was dx again with this disease.

    Interesting thing Deb.......I was thinking about posting something close to what you did above after reading EDGE'S comments.....now I can't even find his words....but it was from the link I posted in this message.

    So should any of you want to search the site.....I'm sure you could find it. Get some coffee or tea and explore. I find EDGE to be so informative and all of the women on that site are great! 

    Hugs,

    Terry 

  • tos
    tos Member Posts: 14
    edited April 2009

    It appears the basal test is not done on a routine basis.  It appears to be a seperate test.

    All I have read regarding basal has not mentioned women over 50 need not worry.

    My tri neg did come back in 4 1/2 yrs. Both times I was over 50.

    With alll due respect to Mr. Edge, I did read his opinion and when I asked more of a explanation or reasoning on why women over 50 had no worries he frankly wouldn't answer me!

    I'll go with the studies from reputable websites and people who have credentials.

  • Rainenz
    Rainenz Member Posts: 21
    edited April 2009

    Galnok

    I'll join you also being a double triple neg dx and 42 and 51 with multiple nodes involved both times.

  • tos
    tos Member Posts: 14
    edited April 2009

    Rainenz, what type of treatment did you have and/or surgeries?  What is your follow-up if you don't mind saying.

  • Rainenz
    Rainenz Member Posts: 21
    edited April 2009

    Galnok, 1st time I had Lumpectomy followed by AC x 6 every 3 weeks and Rads. Had frequent follow ups 1st 5 years then just had annual Mammogram and check.  New one was found at annual check but was very aggressive.

    2nd time went  for another Lumpectomy so that I would be even once more but had to go back for a Mastecomy that was followed by FEC x 4 every 3 weeks and was to have 8 weeklyTaxol but due to SE's only had 6. Also had Rads.  For 1st 2 years after this Dx I have been having 3 monthly checks with Onc and BS so was seeing one or other every 6 weeks, now I see them each every 6 months so still have a check with one or other every 3 months.Have an annual Mammogram/Ultrasound and only get other scans if symptomatic.

     What sort of follow up do you get? 

  • tos
    tos Member Posts: 14
    edited April 2009

    Rainenz,

     I began with a new Onc this last January and am going back next week.  Not sure if she will stay with 3 mos. yet or not.  I think I outgrew the Onc I had for so long.  He knew barely nothing about TNBC.

    Since you have had a mastectomy can you tell me if you have had problems with puffy sore areas above your scar line?  I have a place that I've had for some time and it is just getting worse, even hurts when I turn wrong.

    My second tumor was found on a mammo.  Were you having any signs?

  • Analemma
    Analemma Member Posts: 139
    edited April 2009

    I was dx with triple negative when I was 50.  Mets at 53 (for my birthday present).

    http://bcwatchdigest-triple.evidencewatch.com/

    This is the link to Constantine's treatise on triple negative bc.

  • Alex517
    Alex517 Member Posts: 3
    edited April 2009

    I was 52 at diagnosis, and BRCA2+.  I haven't heard from anyone on these boards or others, or at FORCE meetings or my support group that was also triple negative and BRCA2+(about 12-14% of BRCA2+ are TN I think).  It's coming up to 2 years since diagnosis and I'm feeling fantastic.  I had PBM and SO about 4 months ago, and the pathology showed no signs of abnormal cells.  I realize rogue cells may have set up housekeeping elsewhere from the original dianosis, but I feel great today.  I've been as pro-active as I could be, am healing from recent surgery slowly but surely, and most importantly my core self is very optimistic.

  • Laura-Vic
    Laura-Vic Member Posts: 4
    edited April 2009

    Good evening Ladies ... I was 48 years old at dx. in August, 2007.  I am heading to my 50th birthday in 4 days !!!  There were certainly times I wondered if I would see this birthday.   My tumour was 4.1 cm and TN.  I had a bilateral mastectomy (my choice).  I was heavy chested and could not imagine having one boob hanging there all the time.  This is a very personal decision for everyone.  I had the surgery, followed by 6 sessions of FECD chemo and 28 rads. 

    I have now returned to work full-time.  I still struggle with "finding the word" which I hear is common for people after chemo.  I do not have the same umph as I used to .... I look pretty good on the outside and I find it hard to balance that .... people that do not know - look at me and think I'm lazy.  After all - I don't wear a sign, but while the mind says let's do it ... the body says go on ahead without me ...

    Am I weird in this ... because I feel like I've been dropped into a black hole (tx ends .. good-bye and good luck) I'm feeling like I'm treading water.  I'm almost jealous of people that have Tamoxifen or Armidex to take.  I feel like I'm not contributing to the fight.  I'm waiting for the shoe to drop ... every ache and pain = could this be it.  I don't want to become a hypocondriac but what if I leave something ... After all, sometimes a charley horse is just a charley horse and not a blood clot - LOL.

    Anyways ... thank you for this thread ... I sometimes feel like the old foggy.

  • tos
    tos Member Posts: 14
    edited April 2009

    Hi laura-Vic, I think our disease puts us in a position of waiting for the other shoe to drop.  With the recurrence risk high the first few years and we have nothing to take, it is no wonder we are a bit edgy.

    Nice to meet ya.

  • tos
    tos Member Posts: 14
    edited April 2009

    Since so many of the studies for triple neg are for the women under 40 does this concern any of you?  Do you feel these studies encompass us also?

  • psp2pdx
    psp2pdx Member Posts: 6
    edited April 2009

    I was diagnosed  a month before my 55 th birthday.  That was three years ago.  I just had tumor markers drawn yesterday.  I am followed every 6 months.  I started counting my time from whenI finished chemo and radiation so am 2 1/2 years out although it is just over three years from my dx. I too had heard it was a younger woman's disease.  Guess we are young at heart!   I did have AC and 35 radiation txs.  I had a very aggressive high grade tumor.    

    I don't have the energy I used to but am happy to be here. 

  • ewormwood
    ewormwood Member Posts: 1
    edited August 2010

    I was diagnosed in April 2007 at 60, had Bilateral Mastectomy and Chemo.  Also had reconstruction with tissue expanders and then saline implants in January 2008.  In March 2010, after an almost complete recovery,  I decided to get nipples and then two weeks later found a lump in the same location over my left implant.  Not until this year did I hear of Triple Negative BC and realize that I had it.  So far I have had the local recurrence surgically removed and am about to start radiation.  Has anyone else had radiation with an implant in place?  Anyone else had a local recurrence similar to my situation with anything to share?