Topic: Long term survivor examples.

Forum: Triple-Negative Breast Cancer — Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Dec 17, 2013 12:46AM - edited Dec 17, 2013 12:53AM by banr

Posted on: Dec 17, 2013 12:46AM - edited Dec 17, 2013 12:53AM by banr

banr wrote:

Just an idea came across my mind.

Can we share stories and examples of long term triple negative survivors. They dont participate in such forums. So its only by word of mouth that we get to hear about them.

But I also see few of them in this website, who themselves are long term survivors. I feel so happy to see how they have moved on so beautifully with their lives.

I know two such women. Both close to 10 years out of diagnosis. Both without any family history of cancer.

One diagnosed in 2003 and another in 2004. Both were in their late 30s then. Those days they were not aware that they were triple negative. But they say that tamoxifilin didnot work on them, they had only surgery chemo and radiation. So in all probability they were tnbc patients.

One was stage 1, another stage 2b. One had 6 rounds FEC and another had 6 rounds TAC. They both have yearly check ups now and are leading completely normal lives.

I also know another woman, who got diagnosed 5 years ago but stage 3, body didnot respond to tamoxifilin and had complete mastectomy. She had 6 rounds TAc, plus rads. Living a normal life...and put the entire episode behind her.

If you also know someone having similar treatment and diagnosis years ago and is still living ...please share. It will be very insipiring.

Love u all!!

Theory of randomness...so unfair! Dx 9/12/2013, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 9/30/2013 Lumpectomy; Lumpectomy (Right) Chemotherapy 11/6/2013 AC + T (Taxol) Radiation Therapy 3/11/2014
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Feb 21, 2014 05:23AM - edited Feb 21, 2014 05:23AM by banr

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!

Theory of randomness...so unfair! Dx 9/12/2013, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 9/30/2013 Lumpectomy; Lumpectomy (Right) Chemotherapy 11/6/2013 AC + T (Taxol) Radiation Therapy 3/11/2014
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Mar 14, 2014 04:29AM LuvinMyLife wrote:

not very far out, but I'm 13 months out.  One year mark and all is clear. 

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Mar 14, 2014 05:28AM bak94 wrote:

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!

Not really sure what stage I am-Some docs say 3C, others say stage 4. I had no auxillary nodes positive but had internal mammary nodes positive and possibly mediastinal node positive. It's just a number anyways, right? Dx 12/15/2002, IDC, 3cm, Stage IIB, Grade 3, 2/40 nodes, ER-/PR-, HER2- Surgery 1/2/2003 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Chemotherapy 2/5/2003 Adriamycin (doxorubicin), Taxol (paclitaxel) Radiation Therapy 7/8/2003 Breast, Lymph nodes Dx 4/5/2011, IDC, 2cm, Stage IIIC, Grade 3, 0/2 nodes, ER-/PR-, HER2- Chemotherapy 4/27/2011 AC Targeted Therapy 5/14/2011 Avastin (bevacizumab) Chemotherapy 7/29/2011 Abraxane (albumin-bound or nab-paclitaxel) Surgery 11/30/2011 Mastectomy: Left, Right Radiation Therapy 2/11/2012 Breast, Lymph nodes Hormonal Therapy 4/10/2012 Aromasin (exemestane) Hormonal Therapy 8/2/2012
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Mar 14, 2014 08:45AM - edited Mar 20, 2014 10:46AM by MaryGlykeria

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 .

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Mar 14, 2014 08:52AM - edited Mar 14, 2014 08:53AM by MaryGlykeria

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Mar 15, 2014 09:33AM Mikesgirl17 wrote:

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.

Dx 10/6/2013, <1cm, Stage IB, Grade 2, ER-/PR-, HER2- Surgery 11/8/2013 Lumpectomy: Left Chemotherapy 12/5/2013 AC + T (Taxol)
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Mar 15, 2014 10:21AM Lettinggo wrote:

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.  

I choose to empower myself with Divine Love and Protection and let go of fear, helplessness and hopelessness Dx 1/7/2014, IDC, 2cm, Stage II, Grade 3, ER-/PR-, HER2-
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Mar 16, 2014 08:57AM maryna8 wrote:

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!

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy; Mastectomy (Right) Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Mar 16, 2014 08:57PM Carol99 wrote:

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!  

I connected with my birth mother 10 years ago and discovered I am BRAC 1 positive. Surgery 8/23/2011 Prophylactic ovary removal Dx 9/13/2013, IDC, <1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Surgery 11/4/2013 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Chemotherapy 12/16/2013 AC Chemotherapy 1/8/2014 AC Chemotherapy 1/27/2014 AC Chemotherapy 2/10/2014 AC
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Mar 18, 2014 12:28AM - edited Mar 20, 2014 11:05PM by kathy1819

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.  

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