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Lillie
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Joined: Jul 10 2009
Location: Eastern NC
Status: Offline
Points: 3616
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Posted: Mar 21 2018 at 10:46am |
Hello Lindakay, I love your name. One of my best friends in school was Linda Kay. So glad you came to the TNBC site to share your story. Expect a lot of love and help, in many ways, from the ladies on this site. When you get the complete story of your diagnoses, please share and we are here to give you assurance that you are not in this battle alone. We are here to encourage, answer questions and so many other things for you. So sorry you are facing this diagnoses. You are in our prayers. Love, Lillie
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Dx 6/06 age 65,IDC-TNBC Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED
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lindakay
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Joined: Mar 21 2018
Location: texas
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Points: 1
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Posted: Mar 21 2018 at 10:17am |
Hello, Im new to this site, I was just diagnosed with Triple Negative, dont have my stage or anything yet, ready for the ride, I guess...
Prayers for all of us.
Linda
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cheeks
Senior Member
Joined: Jan 14 2011
Location: North Carolina
Status: Offline
Points: 676
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Posted: Mar 20 2018 at 7:54am |
Hello Lillie! It is so wonderful to see you post about how many years you have had as NED I am still so sorry about Donald's passing. I know he was the love of your life, your companion and your best friend. Love, Blair
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Lump found 11/08 DX: 2/09 @52 TNBC L. Mast. 3/26/09, SN-, BRCA-, 4.5 cm (post surgical)T2NOMO Chemo: 4/09-10/09 Taxol x 12, A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Lillie
Senior Member
Joined: Jul 10 2009
Location: Eastern NC
Status: Offline
Points: 3616
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Posted: Mar 19 2018 at 9:49am |
Dear Darcy, Congratulations on your 2 years NED. I remember that time in my recovery and longing to hear success stories. That is why I am still posting. It is not easy to stay positive, but as time goes by it gets easier. God Bless
Lillie
Edited by Lillie - Mar 19 2018 at 9:50am
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Dx 6/06 age 65,IDC-TNBC Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED
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darcyd
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Joined: Oct 31 2015
Location: Green Bay
Status: Offline
Points: 15
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Posted: Mar 18 2018 at 7:38pm |
Hello,
It is so good to see so many here with multiple years of being Cancer free. I just celebrated 2 years myself.
Yeah us!!!
Darcy
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IDC with extensive squamous differentiation,1.5cm,stage 1,Grade 3,Ki-67 25%,TNBC TX-TC q21 days x4, Neulasta x3,mastectomy 3/1/16. dx's 10/15 age56
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Lillie
Senior Member
Joined: Jul 10 2009
Location: Eastern NC
Status: Offline
Points: 3616
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Posted: Mar 17 2018 at 9:26am |
Dear snugltz, So good to hear from you. Thank God for your good checkup and mammo. I am living life without my sweet Donald and it is difficult in different ways at different times. My adult children have been so good to me and I to them also. Yeah! 8 years NED, Congratulations Love, Lillie
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Dx 6/06 age 65,IDC-TNBC Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED
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snugltz
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Joined: Jul 10 2010
Location: Reedley
Status: Offline
Points: 438
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Posted: Mar 16 2018 at 1:48pm |
Lillie
You were an inspiration to me also. I have prayed for you daily for several years since you posted your husband died Its nice to know God is helping you. I also feel the cancer helped me face challenges. Thanks for posting. I was wondering how things were. It will be 8 years for me in May. Just had my checkup and mammo. All good.
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1 cm, 0/2 neg nodes, lumpectomy 6/16/10, cytoxin/taxotere 4x every three weeks, rad start 11/8 33X
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Lillie
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Joined: Jul 10 2009
Location: Eastern NC
Status: Offline
Points: 3616
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Posted: Mar 16 2018 at 9:52am |
Thank you Kellyless for your sweet message. My husband died in Aug. 2014. That created the tough times I have experienced, but I am now in a better place, Thank God. So glad I could make you day, as you have made mine. Love, Lillia
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Dx 6/06 age 65,IDC-TNBC Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED
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Kellyless
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Joined: Jun 18 2009
Location: Dallas, Texas
Status: Offline
Points: 1154
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Posted: Mar 16 2018 at 9:34am |
I have been so worried about you, my cancer twin thank you so much for posting, it made my day! I'm so sorry you've been facing tough times Lillie. You've been the most positive force here since I joined all those years ago. Your faith, kindness and positivity has always been a source of inspiration for me. We've truly been blessed by your presence.
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IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads 6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Lillie
Senior Member
Joined: Jul 10 2009
Location: Eastern NC
Status: Offline
Points: 3616
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Posted: Mar 15 2018 at 4:40pm |
Hello Sisters, It has been a few years since I posted on the TNBC site, so I though I owe some of you an update. On June 9, 2018 will make 12 years since I was diagnosed with TNBC. I feel obligated to share this wonderful news with all. When I came on this site in 2009, I received so much help from so many sisters. I hope my story will give hope and courage to many. Actually I formed friendships here that are still in place to this very day. It is a wonderful site, and I have missed it. I've had a lot of changes in my life during this last 11 1/2 years, and I am confident that God gave me the strength to face the changes because of having breast cancer. We all know that it is a battle and we have to summon all the courage we can. It makes us stronger. Love, Lillie
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Dx 6/06 age 65,IDC-TNBC Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED
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TripleTip
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Joined: Apr 16 2009
Location: La Verne
Status: Offline
Points: 12
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Posted: Mar 07 2018 at 6:58pm |
It's been almost 11 years since diagnosis and 10 years since treatment completion! (I did go on after pondering my BRCA2+ status to having a BMX/reconstruction) I just wanted to check-in since I'm still here Maybe it's time I lose that extra 40 pounds...
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Lump discovered May 07
Stage IIa, Grade 3
Lumpectomy, SNB, 2/5 nodes +
4 DD A/C, 10/12 Taxol
Radiation 28 with 5 boosts
BRCA2+
PBM with free TRAM, Salpingo oophorectomy Dec 08
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vickyann
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Joined: Sep 25 2008
Location: Texas USA
Status: Offline
Points: 127
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Posted: Feb 13 2018 at 8:57pm |
I remember like it was yesterday finishing Chemo and the fear of cancer returning. If I went to a movie they would advertising a Christmas or summer blockbuster and I would wonder if I would be alive. It is very scary. Everyone has supported you thru chemo and everyone thinks....yeah it’s over..... The fear is just beginning for you. Let me add you have been sick and haven’t been thinking about the future. Your only thought is getting thru chemo....
NOW for the good news...... Hakuna Mata the kids movie..it means no worries for the rest of your life.... in other words..worrying is a waste of time..... if it’s 3 years you have ahead or 50. Don’t use your days in fear. Be happy, positive, and you will feel better....trust me... I am an 11 year TNBC survivor.
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Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09
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SagePatientAdvocates
Senior Advisor
Joined: Apr 15 2009
Status: Offline
Points: 4748
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Posted: Feb 12 2018 at 8:59pm |
Thanks for the wonderful update Falcon!!!!!
hugs and love,
Steve
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Falcon
Groupie
Joined: Apr 23 2010
Location: California
Status: Offline
Points: 55
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Posted: Feb 12 2018 at 7:22pm |
My sister is now over 20 years a BRCA1 survivor and my daughter is also BRCA1 survivor for 8 years.
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My daughter Jessica
Treated and Healed!!!!!
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kmartin
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Joined: May 02 2008
Location: Central Maryland
Status: Offline
Points: 126
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Posted: Feb 09 2018 at 9:09pm |
Dear All,
All day I have been thinking about the best way to commemorate the 10 year anniversary of me finding my breast cancer, and 3 weeks later hearing "you have triple negative breast cancer."
I am well, and often forget that I went through the grueling 8 months of treatments..that did land me in the hospital for 8 days (after round 3 of TAC)....but, I'm hear to say it was all worth it!!!
I have lived to:
Celebrate 35 years of marriage See both sons graduate from college - one now with a doctorate Continue to work as a nurse Enjoy music ~ especially bluegrass : ) ...and so much more
Hang in there, and if you were lucky enough to find your cancer early, thank God/your lucky stars/the Universe....
Love to all,
Kathy
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Found Lump, 2/8/08
Bx IDC, Stage 2, Grade 3, TN
Lumpectomy, axillary node dissection 3/11/08
4/33 positive nodes
TAC x 4, AC x 1
RT x 33-finished 10/14/08
BRCA 1 & 2 Negative
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Falcon
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Joined: Apr 23 2010
Location: California
Status: Offline
Points: 55
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Posted: Jan 24 2018 at 2:49pm |
Sister was dx at age 32 will now be 67 this February!
Daugher was dx at age 32 will be 41 this March!
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My daughter Jessica
Treated and Healed!!!!!
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123Donna
Senior Member
Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13509
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Posted: Jan 23 2018 at 10:38pm |
Natalie,
You are so welcome and I hope you can get some answers. There is a genetic test that is very affordable, called Color Genetic Testing. There have been some threads talking about this expansive test that is very affordable. The test costs $249.
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Natalie
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Joined: Nov 11 2011
Location: Bay Shore NY
Status: Offline
Points: 473
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Posted: Jan 23 2018 at 9:40pm |
Thank you very much Donna. I have the link and will be sharing with my oncologist, I will call and make appointment in near future to investigate further. If I weren't tested it may be a hard sale since the testing is usually done on those with colon or uterine cancers (mine was precancerous), and also the fact that I now only have NYS Medicaid. Thank you again, you have been a wonderful resource for all of us. Natalie
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TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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123Donna
Senior Member
Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13509
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Posted: Jan 23 2018 at 9:10pm |
Natalie,
You can ask if they tested you for Lynch Syndrome. If positive for a mutation, they may recommend frequent colonoscopies (every 1 to 2 years). Colonoscopies would be preventative. Also, they may recommend a preventative hysterectomy since there is a link to some gynecological cancers.
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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123Donna
Senior Member
Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13509
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Posted: Jan 23 2018 at 9:07pm |
Natalie,
Two new breast cancer
genes emerge from Lynch syndrome gene study
Researchers at
Columbia University Irving Medical Center and NewYork-Presbyterian have
identified two new breast cancer genes. Having one of the genes—MSH6 and
PMS2—approximately doubles a woman's risk of developing breast cancer by age
60.
The study, in collaboration
with GeneDx, a genetic testing company, was published online today in Genetics
in Medicine.
The two genes were previously
known to cause Lynch syndrome, an inherited condition that raises the risk of
colorectal, ovarian, stomach, and endometrial cancer. Lynch syndrome is the
most common inherited cause of colorectal cancer, accounting for about 3
percent of newly diagnosed cases. One in 440 Americans has a gene variant that
causes Lynch syndrome.
Researchers had suspected that Lynch syndrome genes may also
cause breast cancer. Some
studies had found a link, whereas others had not.
"People with Lynch syndrome aren't thinking they may also
be at risk for breast cancer,"
said Wendy Chung, MD, PhD, the Kennedy Family professor of pediatrics (in
medicine) at Columbia University Irving Medical Center, clinical geneticist at
NewYork-Presbyterian/Columbia, and the study's senior author. "Given the
fact that genomic analysis is becoming more common in patients with a personal
or family history of cancer, we have an opportunity to do more targeted breast
cancer screening in women who carry any of the genes associated with risk for
this disease."
The researchers analyzed a database of more than 50,000 women
who had undergone multi-gene hereditary cancer testing between 2013 and 2015.
Of these, 423 women had a mutation in one of the four genes that cause Lynch
syndrome: MLH1, MSH2, MSH6, and PMS2.
Additional analyses revealed that women with a mutation in two
specific Lynch syndrome genes—MSH6 and PMS2—had a two-fold higher risk of
breast cancer compared to women in the general population.
Based on the incidence of cancer in the study population, the
researchers calculated that about 31 to 38 percent of women with cancer-causing
MSH6 and PMS2 variants will develop breast cancer, compared to around 15
percent of women in the general population.
"The new study suggests MSH6 and PMS2 should be added to
the list of genes to screen for when there is a history of breast cancer,"
said Dr. Chung, who is also director of the clinical genetics program at
NewYork-Presbyterian/Columbia. "Screening for these genes also would give
these families potentially life-saving information to prevent colon cancer by
encouraging individuals with the genes to increase the frequency of their
colonoscopies."
Currently, testing for Lynch syndrome genes is generally only
done when someone has a personal or family history of colon or uterine cancer. https://m.medicalxpress.com/news/2018-01-breast-cancer-genes-emerge-lynch.html
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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