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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Aug 15, 2014 04:32PM ALHusband wrote:

As the husband of a TNBC survivor who is NED just 16 months post diagnosis...I wish this form were like Facebook and had a "Like" button for all of these posts from long term survivors. In fact...there should be a "LOVE" button! Thank you all! I wish you all many many decades of continued good health!

I'm not the BC patient. My wife is. Her chemo was Cisplatin + Taxol since she couldn't have adriamycin. She is BRCA2+. Dx 4/8/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 4/23/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 9/13/2013 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 11/6/2013 Prophylactic ovary removal Surgery 1/17/2014 Reconstruction (left); Reconstruction (right)
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Aug 16, 2014 09:58AM ShellyJo wrote:

Congratulations to all the long term TN survivors. I am also 6 years out from a 2b diagnosis. My details are on my profile. I am happy to still be here.(alive) However, the psychological effects have been hard for me.  I know how hard it is for everyone, and no one will understand unless they have been through this battle themselves. So chin up all my BC sisters, Stay strong, fight hard, pray hard. Enjoy every beautiful day, for it is a gift.

Love to you all, xoxoxoxo

Shelly~

Dx 5/5/2008, DCIS, 2cm, Stage IIB, Grade 3, 1/14 nodes, ER-/PR-, HER2-
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Aug 22, 2014 02:32AM neeciek wrote:

Yes! this Long Term Survivor of Triple Negative BC is music to my newly diagnosed frightened self! I see the surgeon tomorrow and although they say I would fare all right with a lumpectomy, I have dense breasts and really think I want a bilateral mastectomy. I don't know why I don't get to see an oncologist BEFORE making this decision.

Dx 8/19/2014, IDC, 2cm, Stage I, Grade 3, ER-/PR-, HER2-
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Aug 22, 2014 11:00AM KSteve wrote:

Neeciek - My first appt after diagnosis was the surgeon too.  But I went to the oncologist a couple days later and talked to both before making my surgery decision.  Make sure you get your questions answered and you make the best decision for you.  I understand what you're saying about dense breasts.  That's what made me decide to do the bilateral mastectomy as well.  Often with triple negative, the oncologist will want to do chemo before surgery.  You definitely need to meet with both doctors (surgeon and oncologist) to get all the necessary information to help you with your important decisions.  Good luck to you, and join us on the Calling all TNS thread for lots of great support from awesome ladies who have the same diagnosis as you.

Hugs,

Kathy

Dx 9/3/2010, IDC, 6cm+, Stage IIIA, Grade 3, 3/15 nodes, ER-/PR-, HER2- Chemotherapy 9/21/2010 AC + T (Taxol) Surgery 1/8/2011 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 3/15/2011 Breast, Lymph nodes Surgery 6/1/2011 Reconstruction (left); Reconstruction (right) Surgery 12/6/2011 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Surgery 1/23/2014 Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Surgery 4/4/2014 Reconstruction (left); Reconstruction (right)
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Aug 24, 2014 06:26AM - edited Aug 24, 2014 06:26AM by banr

neeciek: at stage 1, lumpectomy is as good as mastectomy. in fact mastectomy doesnt offer survival advantage over lumpectomy but yes, if u opt for the former, you wouldnt need rads post chemo.Thats what I was told.

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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Aug 25, 2014 05:13PM megomendy wrote:

Neeciek, def see the oncologist before surgery. I didnt and she would prob have recommended neoadjuvant chemo (chemo before surgery). the nice thing about that is that when you have your surgery, you may find out that your cancer has totally disappeared (NED- no evidence of disease) which must be wonderful. Since I had surgery first, I'll never really know if it's gone or not.

Meg Dx 2/2013, DCIS, <1cm, Stage 0, Grade 3, ER-/PR- Surgery 3/14/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Dx 12/2013, IDC, 2cm, Stage IIA, 0/0 nodes, ER-/PR-, HER2- Surgery 1/29/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel
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Aug 25, 2014 09:30PM Gramof2boys wrote:

I also saw BS after diagnosis and he said chemo before surgery, then saw MO. I did my chemo then had left mastectomy with a temporary implant, radiation and now just 1week ago had right mastectomy and bilateral reconstruction. It's been 1 year since my diagnosis and so far so good!! 

Dx 8/30/2013, IDC, 2cm, Stage IIB, Grade 2, ER-/PR-, HER2- Surgery 3/14/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Radiation Therapy 4/16/2014 Surgery 8/19/2014 Prophylactic mastectomy: Right; Reconstruction (left): SGAP flap/hip flap; Reconstruction (right): SGAP flap/hip flap Surgery 10/10/2014 Reconstruction (left) Surgery 12/17/2014 Reconstruction (left): Stacked DIEP flap
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Sep 3, 2014 11:02PM sally9876 wrote:

Hi Shelly! Very happy for you and wishing you continued good health for many years to come.  I'm just curious, did you have a lumpectomy?

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Sep 5, 2014 10:41PM msjag wrote:

4 years out,  bone scan/chest x-ray/mri/mamo all clear.  Feel so blessed.  

Dx 9/29/2010, IDC, 1cm, Grade 3, 0/2 nodes, ER-/PR-, HER2-
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Sep 6, 2014 08:52PM JoeyJamesMom wrote:

Hi,  Gorilla12.

That is GREAT news...Wow, 10 years!!!  Good for you :-)

May I ask what chemo meds you had? 

I have had 3 Taxol treatments with 1 more to go, then  I will have 4 A/C.

The A/C scares me.  I asked my MO about possibly using something else and he said it is the standard,

so basically no.

I was hoping for a better or more detailed response then that :-(

I am very worried about the A/C causing damage to my heart.

So, here I am going through these threads seeing what chemo everyone else triple negative has had or are having.

I hope and pray for your continued health and that in 10 years the rest of us can say that :-)

Many thanks for posting!  It means a lot to us.

Successful Penquin Cold Cap User Dx 6/16/2014, IDC, 1cm, Grade 3, 0/3 nodes, ER-/PR-, HER2- Chemotherapy 7/24/2014 Taxol (paclitaxel) Chemotherapy 9/25/2014 AC

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