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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Jul 1, 2014 04:22PM - edited Jul 1, 2014 04:27PM by placid44

Made2b,

Are you sure some of what appears to be left isn't scar tissue? That is, it can appear that the tumor hasn't shrunk much, but really some of the tumor is dead cells killed by the chemo. They can't tell for sure until surgery/pathology what is still active cancer and what is not, although MRI and ultrasound can give some clues.

Ki67: 70%; beltwaybreastcancer.blogspot.com Dx 8/20/2012, IDC, 3cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- Chemotherapy 8/28/2012 AC + T (Taxol) Surgery 2/11/2013 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 3/25/2013 Breast, Lymph nodes Surgery 11/24/2013 Reconstruction (left); Reconstruction (right)
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Jul 10, 2014 07:15AM sally9876 wrote:

Please, are there any long term Triple Negative BC survivors with lumpectomy??? Really would love to know.

Thanks,

Sally

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Jul 10, 2014 07:22AM lintrollerderby wrote:

I'm not really long term since I'm just over 3 years out from diagnosis. I had an excisional biopsy because no one at all thought my lump was malignant, then when pathology came back that not only was it malignant but very aggressive, I didn't have clear margins. I had a re-excision to get good ones. I had 4 rounds of chemo and had some complications, so I went against medical advice and didn't have radiation. I found out a year later that I have a BRCA1 mutation, so then all of my doctors were saying it's probably good I declined radiation since I need a mastectomy because of the BRCA status. I have that surgery and my BSO coming up. My situation is a little different, but I had only a lumpectomy with chemo and so far I'm doing ok. 

Diagnosed at age 34 on 11 May 2011 • IDC • Right • 1.3 cm • Stage I • Grade 3 • 0/3 nodes • ER-/PR-/HER2- • Triple Negative and Basal-Like • Ki-67: 76% • P53: 64% • BRCA1+ (no family history) • BRCA1 mutation: IVS5-11T>G (known deleterious mutation) Surgery 4/27/2011 Lumpectomy: Right Surgery 5/30/2011 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 6/22/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 10, 2014 07:46AM sally9876 wrote:

hi jramick, did you exercise during chemo? What exercises did you do? What was your diet during chemo and what chemo meds were you on?

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Jul 10, 2014 11:31AM lintrollerderby wrote:

I wanted to add that I am less than 3 years out from my last chemo and my hair is down to my waist. It's different than before chemo; it's still really curly, the texture is different, the color is not the same, and there's a bit more gray, but it grew back fast.

Diagnosed at age 34 on 11 May 2011 • IDC • Right • 1.3 cm • Stage I • Grade 3 • 0/3 nodes • ER-/PR-/HER2- • Triple Negative and Basal-Like • Ki-67: 76% • P53: 64% • BRCA1+ (no family history) • BRCA1 mutation: IVS5-11T>G (known deleterious mutation) Surgery 4/27/2011 Lumpectomy: Right Surgery 5/30/2011 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 6/22/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 13, 2014 10:23AM Alex517 wrote:


Today is the 7th anniversary of my cancer surgery!  NED all these years!  Very, very thankful!

Dx 6/13/2007, IDC, 1cm, Stage IIA, Grade 3, 2/5 nodes, ER-/PR-, HER2-
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Jul 13, 2014 01:57PM MomMom wrote:


Alex,  What fantastic news!!!   Thank you for posting!!

Paula

Dx 1/9/2014, IDC, 1cm, Stage IA, Grade 2, 0/2 nodes, ER-/PR-, HER2- Surgery 1/28/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 2/25/2014 AC + T (Taxol) Radiation Therapy 8/6/2014 Breast, Lymph nodes
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Jul 14, 2014 08:35PM banr wrote:

So many amazing TNBC survivors here!!! SO happy for all of you and wish you many many many more years of good health.

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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Jul 18, 2014 10:50AM Lettinggo wrote:

Placid, so good to hear from you. We missed you at the lunch the other day.

Did you have your SNB before the chemo? I had chemo first.  I also had TNBC

 I also had 4 sentinel nodes out too. Who is your plastic surgeon? I had chemo first like you and my blood count is so low that i just opted for a unilateral without recon.   but am now thinking of removing the left breast and do recon on both breast. Don't know if it is still possible to do it on the breast that had the MX. 

Look forward to meeting you at the next lunch.  take care

Lyan

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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Jul 18, 2014 06:42PM - edited Jul 18, 2014 06:44PM by placid44

Lettingo,

Thanks! Hope to see you at one of the lunches soon. I had the SNB before chemo. My plastic surgeon is Dr. Nahabedian at georgetown. He will come to fairfax hospital if needed. I had a good experience with him. I have a little rippling on the non-radiated side, but I don't think that was him. I'm not sure about your recon. I don't think you can have an implant on a radiated side unless you did the expansion before radiation, but you could do flap? If no radiation was done, then maybe implant OR flap are options? Dr. Naha does both implant and flap, but is a real guru of DIEP flap.

Ki67: 70%; beltwaybreastcancer.blogspot.com Dx 8/20/2012, IDC, 3cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- Chemotherapy 8/28/2012 AC + T (Taxol) Surgery 2/11/2013 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 3/25/2013 Breast, Lymph nodes Surgery 11/24/2013 Reconstruction (left); Reconstruction (right)

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