I promise

"I promise, Suzy... Even if it takes the rest of my life." - Nancy G. Brinker, founder of Susan G. Komen for the Cure

What is Triple Negative Breast Cancer?

WHAT IS TRIPLE NEGATIVE BREAST CANCER?

Just in recent years, Triple Negative Breast Cancer has sparked interest in the news where instead of calling the tumor as ER-negative, PR-negative, and HER2-negative; researchers began using the shorthand term, "Triple Negative," dubbed the "new type" type of cancer. Being Triple Negative, you don't have a targeted therapy and that your only treatment option is chemotherapy.

Triple Negative is seen in about 15% of all breast cancers. Triple Negative is a very aggressive cancer that tends to strike younger women, pre-menopause, especially among African-American women and women who have BRCA1 mutations. The tumor tends to be fast growing and is less likely to show up on an annual mammogram. TN is more likely to metastasis early on; has a high rate of recurrence in the first 2-3 years from diagnosis and has a poorer prognosis than other types of breast cancer due to lack of specific, targeted treatment for TNBC.

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Saturday, July 27, 2013

Triple Negative Breast Cancer Does Not Discriminate: Introducing My TNBC Pink Sisters

UPDATED July 30, 2013:
Thank you ladies for participating in my project in putting a face to TNBC, showing that this sub-type of breast cancer is striking younger women of all races. I am proud of each and everyone of you for fighting this disease and for helping me in bringing awareness to Triple Negative Breast Cancer and the need for further research.
Love to all,  Melissa Paskvan, TNBC Survivor


Cristy Norwood, Warrior Chick: TNBC Dx. October 2009, Age 36
Diagnosed in Oct. 2009, age 36 and just out of 1st trimester pregnancy with 5th baby.
I had 2 tumors in my right breast, each 2.5 centimeters. I was stage 3, grade 3, tested neg for BRCA.... 6 out of 23 lymph nodes that were removed were positive for cancer.
I had a double mastectomy within a week of diagnosis and started A/C 2 weeks after my surgery. I did 5 rounds of A/C while pregnant. Had blood transfusions during this, and chemo put me into labor after each chemo treatment. Taige was born 6 1/2 weeks early, emergency c-section and spent 2 weeks in NICU. I started Taxol (12 rounds) a week after having her. I had 33 rounds of radiation and also did another 13 rounds of CMF chemo. I've had over 320+ doc appointments to date and 18 surgeries.
My lump was first found in March 2009... I was misdiagnosed for 6 months...
was told had we waited 6 more months, I would not be here.

"I am a HUGE TNBC foundation supporter and am cancer free, PRAISE THE LORD!     My hopes & prayers are to help others in any & all ways I can..to be a positive light during what is the darkest time..a testament that God is so gracious & true and always at our side. To fight, keep your faith, be strong & never stop living life...
always be & know we are Warriors!"  ~ Cristy


Brenda Hill: TNBC Dx. Feb 2010, Age 48
Right breast lumpectomy stage 1, 2.5 cm tumor
No node involvement, BRCA 1 and 2 negative.
8 sessions of chemo (ACT), 33 sessions of rads
Grandmother had breast cancer.

Marielle Cavener Westphal: TNBC Dx. July 25, 2008, Age 40

  • July 25, 2008:  I found 'the lump' while showering (2 months short of scheduled mammogram). Left breast at 6:30, far back against my chest wall. 
  • Diagnosed at age 40 with TNBC, stage IIa, grade 3. 
  • Had lumpectomy (clear margins, and sentinel node biopsy was negative), and 8 rounds of dose-dense AC/T (4 of each) followed by 30 rads. 
  • Developed blood clot in right arm (side with my port) 3 days after first chemo treatment. Had immediate surgery to remove port and install new one on left side. Needed daily Lovenox shots for 6 months.
  • Family history: My sister passed away 9/28/05 from BC at age 49.  Her first BC was dx'd 9/98, with recurrence 5/05-mets to brain, lungs and bones.  We don't know if it was TNBC or not, we never even heard the term anywhere through those years.  I have also lost 3 aunts and 1 cousin (all on my dad's side-aunts were his 3 sisters) and also a second cousin to ovarian cancer.
  • Visit to my oncologist in May 2011, based on my bloodwork results, his words were  "we got it, huh?"  Those words and my faith in God are what I cling to, with the belief that I am now and will stay 'cancer-free'.  
  • 7/20/12:  tested positive for BRCA 1.
  • 10/24/12:  Opted for double mastectomy and full hysterectomy.

Vicky Mewbourn Hancock: TNBC Dx. October 13, 2010, Age 49
Found myself, had my daughter scan me (she does ultra scans) 
10/08/10 had a true cut biopsy on my right breast. 
10/13/10 I was told it was cancer
Stage 2, grade 3 , IMC, 
Double Mast 11/16/10
Node negative left 0/1 right breast 0/4
Acx4 every 2 weeks, 12 Wkly taxol
Avastin trial (received placebo)
Brac negative, No family history of breast cancer.
Reconstruction 8/2012, "soft gel" implants oct 2012...

Sara Kouten: TNBC Dx. June 24, 2008, Age 40
I found my lump way up almost in my armpit on 5/26/08. Had Mammo and US 5/28/08. Saw breast surgeon 6/12/08, had excisional biopsy and was dx 6/24/08 @ age 40. Stage 1 (muliti foci invasion ), grade 3. BRCA1+ (187delAG) No family history. Nipple sparing bmx with expanders 8/5/08. I was expanded then had exchange surgery 11/2008. Stupid onc said no chemo since tumor/tumors was/were so small. I celebrated for a a few months then did some research. Was researching about my BRCA mutation on the FORCE website and "met" Caryn Rose (enberg) who directed me to the TNBCF website and there I got an educaition. I kind of freaked out. I went to Boston to see Dr Eric Winer. He reviewed my case, looked at all tests etc, and told me it was a little late for the chemo (it was already 9 months out) but he was concerend with the nipple sparing bmx. He told me he didnt think it was wise being BRCA+, however whats done is done. He was going to present to tumor/surgical board but he doubted they would recommend any changes at this point. 2 weeks later I got the shocking phone call from the fellow saying I should get my nipples removed. I had bmx AGAIN 7/6/09 with expanders and latissimus dorsi flaps, BSO/hyst 9/3/09 and then exchange surgery once again 11/2009. I had the nipples and tattoos the early part of 2010. I always hated the circles that were left from the nipple removal. They were skin paddles that were raised up and thicker becasue of the tan back skin and muscle from the lat flap. (there are pictures posted) They were crooked and in the wrong spot to cover with nipple and areola thanks to my first plastic surgeon. August 14 2012 I had a skin revision removing the skin paddles (and nipples and areolas in the process). Had hematoma and had to be readmitted on 8/19/12 to reopen and drain. Its my mission to educate about TNBC so no one gets sub par tx like I did. I had so many supporters it is also my mission to see to it that no one has to got through this alone. I cannot imagine doing that.


Patti Parker-Phillips: TNBC Dx. August 22, 2008, Age 43

  • Found lump January 28, 2008... Scheduled and had mammogram January 30
  • February 6 2008 went to my ob/gyn who felt the lump and told me the golf ball sized mass (in fact joked and said he hoped my hubby liked golf) was just fybrocystic change nothing to worry about and come back in a year.
  • August 12 -  Felt Pain when putting deodorant on
  • August 15 - Appointment with surgeon who did an immediate Biopsy
  • August 22 - Told of Diagnosis/Stage 3b TNBC Grade 3 in nodes -Age 43
  • Sept 7 - Start Dose Dense Biweekly AC (without port - UGG)
  • Dec 1 - Double mastectomy - 23 nodes removed
  • Dec 23 - Port Placement Surgery - landed me in the hospital overnight when they thought they had nicked a vein (Merry Christmas)
  • Dec 29 - Started Taxotere - 4 rounds 3 week intervals
  • April12 - Started radiation (first 2 weeks with BOLUS - completed 5 weeks) then needed week off because of 3rd degree burns
  • June 1, 2009 - Finished radiation
  • Dec 9, 2009 - Expanders placed - endless pain - thats Dr kept saying was normal
  • May 27, 2010 - exchange Surgery (surgeon found that expanders bent my ribcage in because of the pressure - nice - guess when i kept saying it hurt to breath he should have listened to me)
  • March 9, 2011 - Stage 1 DIEP reconstruction in Antonio Texas (10 hour surgery, 5 nights in hospital)
  • June 15, 2011 - Stage 2 of the DIEP
  • Upcoming ---- Dec 12 Revision surgery for symmetry and the ADD-A-NIP-To-Me.
  • ??? - tattooing to follow - Its been over 3 years I am so ready to be done
http://www.diaryofamadwhitecancerpatient.com

Maria Lagman: TNBC Dx. December 15, 2010, Age 42 Stage 2a, grade 3, 3cm tumor right breast. Diagnosed after clear mammo 6 weeks prior. R mast 12/21/10. chemo started 1/20/11 4dd AC then 12 weekly taxol. thyroid cancer 7/10. Thyroidectomy 8/11 and port removal.  Prop L mast and tissue expanders placed 11/15/11. Oophorectomy 2/12.  Exchange surgery 4/12.

Kathleen Pollard-Vithanage: TNBC Dx. November 2007, Age 39 Stage 2, Grade 3, 2cm, no nodes positive.
8 rounds dose dense AC/T. AC every two weeks  
for 4 rounds and then Taxol every two weeks for 4 rounds. 35 rads, bilateral Mastectomy and hysterectomy. Family history- Mom also premenopausal and maternal aunt died at 31 from BC. NO reoccurrence

                  Chris Gagliardi: TNBC Dx. June 2, 2011, Age 42                     
Stage 1c, grade 3, 1.3cm tumor found self below nipple on aureola of right breast, no nodes involved. Lumpectomy on June 8th. I started chemo (TAC) on July 8.  On July 10 The following week I ended up in the ICU with a WBC of 0.7.  They decreased my TAC dose by 25%. Had two more doses of TAC and then spent 5 days in the ICU.  My bone marrow was shot and they decided to stop the Adriamycin cause it might cause leukemia. My fourth dose was just GC but with another 10%.  My fifth side of GC was also decreased another 10% because of my low WBC which was a total of 45% decrease.  The sixth dose remained the same. Followed by 6 1/2 weeks of radiation

Sandi: TNBC Dx. August 2009, Age 50
Stage 2b, TNBC, right breast, found myself,  2.5 cm x 2.5 cm
 (had mammo less than 1 yr before which was clear), Dbl mast: Aug 2009
(had double mast specifically because of trip neg DX) received 4 A/C and 4 Taxotere.
Reconstruction. 
Complications have been: kidney damage and gout
(only 1 episode of the gout during chemo
)

Natalie Huhn Winchel: TNBC Dx. August 14, 2010, Age 37
No family history of cancer. I found the lump while looking for a source of pain in my left breast. (Left breast, tumor located on the side of breast basically) in my armpit) Stage 2A invasive TNBC, grade 3. Opted for lumpectomy on the advice of my surgeon tumor was 2.2cm. Sentinel node biopsy was negative. I did 4 rounds of dose dense A/C then 4 rounds of Taxotere. During the 3 week break between chemo swaps (from the a/c to t) I was diagnosed with cervical cancer and underwent a Leep procedure on the advice of my onco and gyn. They said I was too immune suppressed from chemo to risk a full hysterectomy at the time. After chemo I had 35 radiation treatments and found out I am BRCA 1&2 negative. Mammo 8/11 showed lots of scarring due to rads... but NO CANCER. YAY!
15 months after I was dx'd... my mother was dx'd w/ breast cancer, Stage 1 (non triple negative) and underwent a lumpectomy and a full spectrum of radiation treatments. We are both now in remission. 

            Julie Punty Olsen: TNBC Dx. May 2009, Age 37
            Stage 3c Triple Negative grade 3. BRCA 1 and 2 negative.
            2cm breast tumor, 4cm armpit lymph node tumor,
            and total of 13 cancerous lymph nodes. Bilateral mastectomy
            Chemo, 4 rounds Taxotere+Cytoxan then 4 rounds of
            Carboplatin+Gemzar. 38 radiation treatments
            Quarterly infusions with Zometa for bone protection for 2 yrs.
            Reconstructive surgeries.
            Remission, still dancing with N.E.D.

Lana Malouf: TNBC Dx. Feb. 10, 2011, age 32
Invasive Ductal Carcinoma, TNBC, Stage 2b
Tumor 3.7cm, No lymph node involement
Double Mastectomy, 10 rounds of chemo ( 6 rounds of
5fu/Cytoxan/Epirubicin, 4 rounds Docetaxel)
Completed 10/20/11, Reconstruction surgery
   
     Tina Carr Milner: TNBC Dx. June 23, 2010, Age 49
     Stage 2B - Tumor Size 2 cm. Lymph nodes involved - 1 
     Treatments - 4 AC, 12 Taxol and 6 or so Avastin. 
     I participated in a clinical trial for this drug.
     Had initial mastectomy in July '10. Decided to have other
     breast removed just because I was TN. (Mar '11)
     Glad I did, they found abnormal cells. 
     Sounds like a repeat would have been on the way
     at some point in the future.

Elise Flaskerud Peters: TNBC Dx. May 14, 2009, Age 41  
             Stage 2a, grade 3, 1.8cm tumor with microscopic mets 
  in 1 lymph node. 6 rounds dose dense Taxotere and Cytoxan & 33 rads. 
Also only had lumpectomy and have since had a staph infection at surgery site.
I don't know of BRCA. Because insurance 
refused it because I was over 40 and not 
enough family history.

Lorraine Richards: TNBC Dx. March 18, 2010, Age 49
Stage 2 or 3, Tumor size unknown
Grade 3, 0 nodes pos. 
3/4 AC, 12 Taxol,  mastectomy on left side. 
I was BRCA neg but have breast cancer on both
maternal and paternal family sides

 Lisa Knauer Spitler: TNBC Dx. March 2010, Age 46
     2.2cm tumor, stage 2A, grade 3, no nodes.
     Double mastectomy w/ expanders 4/10. 
     4 rounds of A/C; 12 rounds of 
     Taxol ended 10/10. No radiation.
     I am BRCA negative
     Permanent implants 12/10.

                 Melissia Fountain: TNBC Dx. July 20, 2010, Age 39
                 Stage 3, T3,  6 1/2cm tumor 3 positive nodes
                 Aug 12, 2010 modified radical mastectomy right breast  
                 4 rounds of Epirubicin, Adriamycin, Cytoxan, 
                 12 rounds Taxol, 28 rounds radiation.
                  I requested the BRCA test but didn't get it.

Susan Wiggins Simpson: TNBC Dx. Nov 2009, just turned 37
Stage 3b, Tumor 3ish CLOSER TO 4cm, 6 Lymph node
8 weeks of Adriac/Cytoxin and 8 weeks of Taxotere 
w/37 rads! Hereditary: "both paternal & maternal" sides of  family with the members dying in early 40's and one in early 50's the other were elderly

              Stephanie Flores: TNBC Dx. July 2010, Age 26            
              Stage: 1, Tumor: 1.5 cm, Nodes: 0/3    
              Bilateral mastectomy: Aug 2010
              Chemo: 4 rounds A/C, 4 rounds Taxol
              Radiation: None
              Gene: BRCA1 positive
              Family history: 2 maternal aunts w/bc (living)

Cheri Colon Edwards: TNBC Dx. August 2009, Age 41
       Stage 1, 1cm, no node involvement,
       8 AC & T treatments, 30 radiation 
       treatments

Raymon Bessix: TNBC Dx. January 27, 2009, age 45
IDC/TNBC, Stage 2, 3cm, Grade 5, 1/7 nodes
Lumpectomy, chemo and radiation. BRCA neg.

                  Tracy Barrett Geiger: TNBC Dx. Oct 2009, Age 42 
                  3+ cm tumor, Grade 3, no nodes - stage 2A. 
                  Left mast Nov 09, chemo (TACx6) start Dec 09, end April 2010. 
                  Right mast and expanders x2 May 2010.
                  Expansion all summer, skin surgery Aug 2010, 
                  Perm implants Nov 2010.
                  Bone scan on breastbone Oct 2010 (neg), other skin
                  surgery Feb 2011.
                  Stage 4 mets as of April 2011, Breastbone & lungs
                  BRCA 1 & 2 neg
                  Passed January 20, 2012

Kitty Francisco Griffin: TNBC Dx. December 21, 2009, Age 41 
 Stage 2, Grade 3... tumor was 1.5cm with microscopic cells 
through out breast, bilateral mass. 4 out of 14 nodes 
positive, 4 dense dose AC ,13 Taxol, 38 rads. 
BRCA1 positive

Michelle Field Allen: TNBC Dx. April 12, 2010, Age 40
Stage 2a, 1.7cm tumor, 1 bad node out of 10.
    8 rounds of AC and T dose dense and 33 rads.
BRCA negative

Karen Miller Herbert: TNBC Dx. July 18, 2009, Age 51 
Stage 2b...largest tumor 1.2cm but many others 
throughout the breast, 6 out of 16 bad nodes...
8 rounds of ACT dose dense and 28 rads.
BRCA neg.

Rachel Pappas: TNBC Dx. September 2009, Age 50.
Stage 2b, 3cm tumor, 2 of 16 nodes positive. 
        4 rounds AC - once every three weeks. 12 rounds 
        Taxol once a week, though I had to delay a few of 
   them because I became severely neutropenic.
Tested BRCA negative
http://www.1uponcancer.com

Linda McCart Tajik: TNBC Dx. January 14, 2009, Age 49
 2.5 cm tumor, Grade 3, Stage 2a
0 nodes BRCA 1&2 neg.
 mastectomy, chemo Cytoxan and
Taxotere x 4

http://caringbridge.org/visit/lindatajik

          Laurie Eliuk: TNBC Dx. Dec 1 2010, Age 52  
          Stage 2b, Tumor 2.1 cm, Nodes: 1/5
          Lumpectomy dec 15/10
          Chemo: 6 rounds TAC
          Radiation to start July 2011 for 6 weeks
          Tested for BRCA results not in yet
          Family history : no cancer maternally but 
          grandmother, aunt great aunt had breast cancer. 
          No TNBC known until me
          I should say the breast cancer was all 
          paternally

              Donna C Stauffer: TNBC Dx. June 2009, Age 49  
Diagnosed after a routine yearly mammogram. Stage 1, grade 3, 1.5 cm, 0/5 nodes. Bi-MX 6/2009, Chemo X 4 (Taxotere/Cytoxan) finished September 2009. No family history and BRCA negative. Breast reconstruction surgery in Nov 2009 with silicone implants. Recurrence to an Internal Mammary node 10/2010 (Restaged - Now Stage 3A).  
BSI-201 trial (Gemzar, Carboplatin, Iniparib) from Nov 2010 until April 2011, whole breast and regional node (IMRT) radiation, 40 rounds, finished June 2011. Pet/CT 10/2011 - NED.  CT Scan 8/2012 - NED.  CT Scan 4/2013 - NED.    

       Kimmie Kim: TNBC Dx. November 1, 2010, Age 37 
       Stage 3, 10 plus cm, 6 infected nodes     
       Was/ Is being treated with Chemotherapy,
       Bi-Lateral Mastectomy, and Radiation
       July 18, 2011- Mets to hip and lower spine 
       Stage 4, Xaloda pills
       Passed October 20, 2011

          Sandy Yoder Kline:   
          Daughter, Whitney Lowe: TNBC Dx. Oct. 2010, Age 25
          Stage 3b, 7.5cm tumor, 3 lymph nodes
          4 rounds of AC, 3 rounds of Taxol
          30 radiation
          possible non FDA clinical trial
          All three scores were 3 so she is 9/9
          Non genetic TNBC, No family history
          Jan 4, 2012, Mets to lungs, Xeloda
          Passed June 8, 2012

                     Lisa Dowaliby
                     My mom, Maureen: TNBC Dx. Sept 2010, Age 62       
                     Stage: 2b-3,Tumor: 2cm x 2.5cm
                     Took 8 nodes, 6 of which were previously 
                     "dirty", all but one had no sign of disease, 
                     the remaining one did still have cancer cells.
                     Mastectomy rt side 4/11--went in for 
                     lumpectomy and "seeds" of cancer
                     were spotted on marker placement, MRI
                     Taxol weekly for 12 weeks, 
                     A/C every two weeks for 4 cycles
                     Radiation to start next week
                     Family history: none known, 
                     not yet tested for BRCA. 
                     Recurrence April 2012
                     Passed October 24, 2012



          Kelly Lynne Richards: TNBC Dx. June 24m 2010, Age 43 
          Stage 2, left breast small lump. Lumpectomy 7/20/10
          One bad node - fat pad removal. 8 rounds of AC and Taxol, 
          35 tx of Radiation. BRCA Neg.


Jennifer Arnholt Cannon: TNBC Dx. March 16, 2010, Age 29
Stage 2a, Grade 3, 2.1cm tumor, 0 nodes positive.
4 rounds of AC + 4 rounds of Taxol. No radiation.
Bilateral mastectomy 4/8/10.

       Maureen Judge Jacoby: TNBC Dx.  Sept. 2, 2009, Age 43     
       Stage 2a, 3 cm tumor, Bilateral mastectomy
       BRCA 2 positive, Chemo AC/T

Denise Griffin: TNBC Dx. August 2002, Age 37
Large tumor..13 nodes, all clean..
6 x chemo, lumpectomy, 25 rads. 
Dx BRCA 1 pos.
Double mastectomy and oophorectomy

  Sheila Gordon: TNBC Dx. January 2010, Age 49
  Stage 2a 2.2cm tumor, 0 nodes positive of 16. 
  4 rounds Taxotere and Cytoxan. No rads.
  Mastectomy right side



The Most Beautiful People 
We Have Known are Those Who 
Have Known Defeat, Known Suffering,
Known Struggle, Known Loss,
And have Found their Way 
Out of the Depths.
These Persons Have an 
Appreciation, a Sensitivity,
And an Understanding of Life 
That Fills them with Compassion, 
Gentleness, And a Deep Loving Concern.
Beautiful People... Do Not just Happen.


~Elizabeth Kubler Ros
                                             
You ladies are the most beautiful people I know... Love you all!

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6 comments:

  1. Wow, putting names and faces together - along with the diagnosis - it's hard not to stop and think about who these ladies are.

    ReplyDelete
  2. It's nice to see pictures and read the stories of some of my online friends and pink sisters! Love, Sandi

    ReplyDelete
  3. Thank you for sharing pics and stats on our TNBC sisters. It was great to see faces with names. I have talked with a few of our sisters on facebook but didn't know their exact stats. I was trying to find one similar to mine...Love and hugs to all my TNBC sisters <3<3

    ReplyDelete
  4. thanks for all your hard work. i see you even updated Whitney's mets to lungs. Love you girl....Love MOM

    ReplyDelete
  5. I don't know how I missed out on submitting for this project...but you did a great job!! Love it! 3 years cancer free TNBC.

    ReplyDelete
    Replies
    1. Thank you and congrats to you on 3 years!

      Delete

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