Topic: Long term survivor examples.

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

Posted on: Dec 16, 2013 11:46PM - edited Dec 16, 2013 11:53PM by banr

Posted on: Dec 16, 2013 11:46PM - edited Dec 16, 2013 11:53PM 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 11/5/2013 AC + T (Taxol) Radiation Therapy 3/10/2014
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Jan 3, 2014 10:11AM - edited Jan 3, 2014 10:13AM by slanderson

Hello!

I was diagnosed tn in July of 2005.  I had a lumpectomy, chemo and radiation. I have had a mammogram and an MRI every year since staggered so we do one test every six months. All of my brca testing was negative. My lymph node status is unknown because the sentinel node test didn't work and my dr said their was no reason to remove lymph nodes since it wouldn't change my treatment plan.  So I guess it's been about 8 1/2 years, so far....so good!  Fingers crossed!

Good thoughts out to everyone!

Ps, I was 41 when diagnosed. 

Shannon Dx 7/13/2005, IDC, 1cm, Stage I, Grade 3, ER-/PR-, HER2-
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Jan 4, 2014 12:24PM banr wrote:

Congratulations  slanderson for completion of close to 9 years!! Thanks for posting! 

I feel so happy when women who are 4 years.. 5 years ..9 years and more, out from their treatments and have gone ahead with their lives, but still find some time and post their thoughts here. All of you are our inspiration.. :) 

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 11/5/2013 AC + T (Taxol) Radiation Therapy 3/10/2014
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Jan 4, 2014 12:59PM AlwaysHope wrote:

I'm a 10 year survivor of triple negative Inflammatory Breast Cancer. (IBC).  Sort of a double whammy.  My follow up was based more on my Inflammatory BC diagnosis so not sure it is relavent for all triple negs.

I now only follow up once a year with my breast surgeon with a diagnotic mammogram on the non-affected side.  I had a unilateral mastectomy so we still watch the other side.  So far so good.

It is possible to have long term survival.  My life is pretty much back to normal and good.

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Jan 6, 2014 11:06AM Mkd55 wrote:

  My story began in August , 2012 when I had a follow up mammogram and was informed I had breast cancer. (stage 2a)  I had surgery (a lumpectomy), 3 treatments of AC should have been 4, but had to be admitted to hospital, 11 treatments of taxol, again should have been 12, but neuropathy was too much, and 19 days of radiation.   Treatment finished last year May. I have a very supportive network of family, friends and members of my church.  My faith in God also helps.

 I was told that my body would not react well to Tamoxifen or Aromatase, so presently I am not on an after treatment drug.  It is good to read that there are survivors that are over 10 years with a TNBC diagnosis.  Are there any signs that I should look for in case of a recurrence?  For the last three weeks my throat is hoarse especially when I speak a lot.  Is that cause for alarm? Hoping to be a part of this positive and informative network. 

I am hoping to hear stories of survival for persons diagnosed with TNBC.

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Jan 6, 2014 09:05PM - edited Jan 6, 2014 09:06PM by banr

congratulations alwayshope..you are a 10 year survivor, wishing you many more decades of healthy life!

Mkd55: Get it checked/ I hope it turns out to be just a viral infection or allergy. All i know BC spreads out to Bone, lungs, brain, liver, usually. So we should be very careful if we have cough which doesnt go, bone pain and other symptoms related to these organs. Our long term survivors will give us better guidance on follow up methods and all. I am just midway, finished AC now for taxol and then radiations.

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 11/5/2013 AC + T (Taxol) Radiation Therapy 3/10/2014
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Jan 16, 2014 06:48PM Pnak wrote:

I just got diagnosed 2 weeks ago with triple neg.  I should be getting BRACA results back tomorrow.  This post is making me feel better about the future.  Thank you!!

Dx 1/2014, IDC, Stage IIA, ER-/PR-, HER2- Surgery 4/28/2014 Mastectomy: Left, Right Chemotherapy 6/10/2014 AC + T (Taxol)
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Jan 17, 2014 12:56AM banr wrote:

Crs319: thanks for sharing your moms and your friend's story. Sure they are an inspiration. hope. You mention  you had lumpectomy and chemo twice. Hope your treatment is over by now

sorry to hear Pnak, that you got diagnosed with tnbc. So whats your treatment plan now. 

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 11/5/2013 AC + T (Taxol) Radiation Therapy 3/10/2014
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Jan 19, 2014 03:26PM Pnak wrote:

I think (waiting for BRACA results) I am joining a study at Dana Farber.  I should hopefully start chemo this week.  I'm nervous....I have no clue what to expect.

Dx 1/2014, IDC, Stage IIA, ER-/PR-, HER2- Surgery 4/28/2014 Mastectomy: Left, Right Chemotherapy 6/10/2014 AC + T (Taxol)
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Jan 20, 2014 12:20AM banr wrote:

Pnak: done with lumpectomy/ mastectomy? 

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 11/5/2013 AC + T (Taxol) Radiation Therapy 3/10/2014
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Jan 22, 2014 07:11PM Pnak wrote:

No.  They are doing chemo first.  They just pushed it to Monday from today.  I think they want to give me a panic attack.  haha.  I'm ready to beat this!

Dx 1/2014, IDC, Stage IIA, ER-/PR-, HER2- Surgery 4/28/2014 Mastectomy: Left, Right Chemotherapy 6/10/2014 AC + T (Taxol)

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