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 09:46PM - edited Dec 16, 2013 09:53PM by banr

Posted on: Dec 16, 2013 09:46PM - edited Dec 16, 2013 09:53PM 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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Feb 13, 2014 12:32PM kalmqu13 wrote:

So wonderful to read how many survivors there are. When I was first diagnosed in 2007 at the age of 37 it was horrifying. I was always very healthy and fit. I just ended up getting a very bad "cold" so thought because I never got sick but I had a tremendous amount of pain in my left breast.  I had a mammogram the next day which didn't show anything but you could feel a lump.  So I went in for an ultrasound....which lead to a needle biopsy. 3 days later I was told I had cancer....and that it was rare and aggressive. I went in for a PET scan and at that time was told I had a total of 6 tumors. 1 was in my left breast, 4 (2 on each side of my neck-lymph nodes) and 1 "cluster" on the right side of my body close to my liver. I asked my Dr. what my odds were at that time. Mind you he is the most amazing Dr. ever and he looked at me and said he didn't like to give odds. But I insisted because I wanted to know what I was about to go through. He looked at me and said "Kristi I will tell you that 1 out of 10 women survive what you have....and you will be my one!"  Here I am almost 7 years later.....N.E.D. hoping to give other women hope knowing they can do it too. 

My diagnosis then.... stage IV Triple negative invasive ductal carcinoma- BRCA negative. 


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Feb 13, 2014 01:39PM StayingFocus wrote:

What wonderful stories of strength, tenacity and just plain "guts"! I LOVE IT! I am a newbie TNBC survivor, IDC,  almost 2 years, but there was no doubt in my mind that I would be successful with my treatment plan. Plus, having a healthcare team working with you is very important. Congratulations and continued good health to all!

Surgery 8/14/2012 Lumpectomy: Right Dx 8/24/2012, IDC, Right, 1cm, Stage IV, metastasized to lungs, Grade 3, 0/2 nodes, mets, ER-/PR-, HER2- Chemotherapy 9/11/2012 AT Surgery 7/16/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel
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Feb 13, 2014 02:29PM sweetpickle wrote:

I am almost a year NED and I know three long term triple neg survivors locally. Two are eight plus years and the other is almost three years.  Waving to my sister pnak who just was diagnosed as I finish up. How crazy is that?  

Heather NED 6/2013 Chemotherapy 1/3/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 11/13/2012, IDC, 4cm, Stage IIA, Grade 3, ER-/PR-, HER2- Surgery 5/23/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Surgery 6/6/2013 Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 1/14/2014 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Feb 15, 2014 07:04AM OneFineDay wrote:

pnac, seems we have similar diagnosis, and potentially same treatment plan.  I'm a little bit ahead of you. You didn't mention if you got a port.  I did, and I am very thankful. I went through chemo sept through January 3, 2014. I had bilateral mastectomy (I chose the bi  I only had cancer in one breast with one lymph node involved).  My chemo experience was tolerable. Getting he right anti nausea drug is key.  I worked through all the chemo, taking off in the beginning on the day of chemo and the day after.  I soon found what days would be good and bad.  You can pm me through the process if you need encouragement or anything to make the journey easier. I don't get onto the site much as I work full time, but I am always on my email. Good luck, you will do fine, the scariest part is not knowing what to expect.  This is a great site to help you through that part.  My best...

Dx 8/13/2013, IDC, 3cm, Stage IIB, Grade 3, 1/6 nodes, ER-/PR-, HER2- Chemotherapy 9/24/2013 AC + T (Taxol) Surgery 1/28/2014 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy Breast, Lymph nodes
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Feb 15, 2014 03:50PM Lettinggo wrote:

Mercygirl, you are a survivor! thank you for sharing with us your story. Can you tell us a little bit more about your experiences with your 4 time brave story?  did the TNBC come back in the other breast? or was a distant recurrence?  what kind of treatment did you receive for each time? Thank you very much. Wishing you a long and healthy life and many many blessed years going forward.  

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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Feb 15, 2014 03:55PM Lettinggo wrote:

Hi Meggy, you are doing great.   6 years means you are out of the 3 to 5 year danger zone.  Congrats!  I am curious to know why they did the neoadjuvant chemo on you and then did chemo again after surgery.  Did they detect any stray cancer cells? did the tumor shrink with the chemo before the surgery?   Thank you very much.  I just started chemo before my surgery and have the same regimen as you with the carboplatin right now.  think i will have a double mx but do not know if i am going through rads after surgery.   Thank you again and keep doing what you are doing.   Take care.

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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Feb 17, 2014 04:45AM banr wrote:

hey everybody!

lovely to login and read about all you wonderful women who have survived it and also about them who are in NED ( wishing them many many many  years of good health).. congrats kalm, stayingfo, sweetpickl and thanks for letting us know about your friends with tnbc who are 8 years out

lettingo: is there any test to pick up stray cells circulating here n there? there is something called CTC, but its still under research as far as i know..have they started using it actively in hospitals?

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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Feb 19, 2014 04:37PM Allydp wrote:

I'm 33 and was just dx triple negative a few weeks ago. My paternal aunt is the only one in my family who's had breast cancer. She was 43 when dx with triple negative, grade IIb. She chose to have a single mastectomy and it recurred in the remaining breast 8 years later. She then had that breast removed and is now 71 years old! I spoke with her on the phone a few days ago and it's like it never happened to her. She doesn't remember tumor sizes, grades, or anything. And not because she's forgetful, just because she's gone on to live her life and doesn't dwell on it. She's truly an inspiration and I hope to live as long and as full a life as she has.

Alicia - Dx at 33, BRCA2+ Dx 1/30/2014, IDC, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR-, HER2- Surgery 2/4/2014 Lymph node removal: Sentinel Chemotherapy 2/24/2014 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 8/15/2014 Mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 12/8/2014 Prophylactic ovary removal Surgery 1/19/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Feb 19, 2014 05:14PM Lettinggo wrote:

Hi BanR, thanks for posting and organizing this post. I wish i knew the answer to your question. As a matter of fact,i just posted a question about how oncologists and doctors base their cancer free diagnoses on. many people were telling me it is just by blood tests and physical exams. what is a CTC? Thank you again and take care.
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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Feb 20, 2014 12:58AM Pnak wrote:

*waving back* at Sweetpickle, my wonderful Sister.  

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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