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 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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Jun 6, 2014 04:47PM KSteve wrote:

Lettinggo - FYI - I had a complete pathological response at the time of BMX, but I also had radiation after surgery due to being TN.  I think different ONC's have different treatment plans.  Having rads wasn't ever even a choice for me (although I know the choice always belongs to the patient).  My treatment plan from day 1 was neoadjuvant chemo, bilateral mastectomy, then rads 

I know I'm not probably considered long-term yet, but I am approaching 4 years since diagnosis at the end of this summer.  Life is good :)


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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Jun 12, 2014 01:31AM nastazia_s wrote:

Hi , i'm almost 5 years since diagnosis and i will have my follow up tests!

Do you get scans and mri for the first 5 years?

What kind of tests for the first 5 years when 10 lymph nodes are involved and what kind of test after the 5 years?

I'm worrying for the radiation due to scans.

Do you have scans and mri or just a mammo with ultrasound, chest x-ray and blood tests?

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Jun 15, 2014 11:00PM made2b2gether wrote:

Hi all. My wife is still undergoing treatment and has only finished taxol thus far (12 weekly).  The shrinkage of the tumor was minimal at only 3-4mm (from originally 2cm) and now we're hoping that the 4 cycles of FEC will do a better job.  There appears to be no spread to the lymph nodes but we'll know more after surgery (which will be in mid- to end August). 

As you can see from our profile, my wife was dx in January 2014 with stage 1 or Stage 2A based on MRI, Ultrasound, CT, RI (bone) Scan etc.  Both BRCA 1, 2 and MLPA tests were negative for deletions / mutations. 

Getting a pCR seems to be very important and having any residual cancer is a big no no (from all the published literature and from reports). 

I am looking for some success stories. StefS, your story is surely positive and gives us hope.  Simplelife4real i"ve followed yoru threads for a while now and you've helped a ton along the way also.

Just hoping the now treatment gets us better results (pCR wise).  Any positive stories of hope will surely help.  We are still in treatment so we'll only know more after the final surgery and path report (plus we have 2 more dense dose infusions of FEC left).

For those that went with neoadjuvant chemo, and did not get a pCR, or had some residual disease, what steps did you take diet wise or treatment wise (As i understand it, no further treatment is usually done and you're just followed up on, unless of course you qualify for a clinical trial). 

Any positive stories will surely help us find hope.


Dx 1/6/2014, IDC, 2cm, Stage II, Grade 3, ER-/PR-, HER2-
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Jun 15, 2014 11:23PM Ozzygirl wrote:

I cannot talk to the pCR as they did not do those back when I was diagnosed. I also did not do neoadj chemo as that had not started yet either. I did surgery and then ACT and no radiation with a 2.5 cm tumor at surgery time.  After the chemo no additional treatment as there is not much for TNBC. No positive nodes but am positive for BRCA1

That being said I am still here 12 years later and still at NED.  My best to you and your wife and hope the FEC helps. 

There are lots of us out there just that lots of people don't post here as often when done.

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Jun 16, 2014 12:37AM made2b2gether wrote:

Thanks Ozzygirl. Yes, we too hope the remaining chemo helps and then i guess we'll see where we can take it from there. We were told that the key is to complete the treatment as per plan. We have a few more 2-3 more months to go.

Dx 1/6/2014, IDC, 2cm, Stage II, Grade 3, ER-/PR-, HER2-
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Jun 17, 2014 09:52AM Luah wrote:

made2: I have known some women on these boards whose tumour responded very well to taxol, and others who responded very well to the FEC/AC regimen.  So try and hang in there to see how it goes next few weeks.  From what I've read, achieving a pCR is a highly reliable prognosticator for disease free survival, but again there are many women on these boards who did not get that pCR and are doing very well. Hopefully some will be along shortly.  Some women have been given additional/different chemo following surgery.  That's something to discuss with your wife's onc once her FEC is complete and you see the final response.  

We've been through some things together/With trunks of memories still to come/Long may you run (Neil Young). Lx, ALND, 4 DD AC &12 weekly Taxol, 31 rads, completed Jul 10 Dx 9/14/2009, IDC, 2cm, Stage IIB, Grade 3, 1/14 nodes, ER-/PR-, HER2-
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Jun 17, 2014 05:56PM simplelife4real wrote:

I went to a wedding over the weekend.  While I was there, I noticed a woman wearing an LE sleeve, so I went up and introduced myself to her. Turns out she had TNBC stage 2b (just like me)!  She has just recently passed the 5 year make with out a recurrence of her TNBC.  It was wonderful to meet her.  I asked if she was active on this site, but she isn't.  I told her about this thread and the good LE threads on this site.  Hopefully, if she decides to become active here, she will post on this thread.  

Just love meeting ladies that have passed the 5 year mark with TNBC without a recurrence!!!

Dx 8/1/2013, IDC, 2cm, Stage IIB, Grade 3, 2/11 nodes, ER-/PR-, HER2- Chemotherapy 9/5/2013 Taxol (paclitaxel) Chemotherapy 12/3/2013 AC Surgery 2/13/2014 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Radiation Therapy 4/1/2014 Breast, Lymph nodes
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Jun 17, 2014 08:46PM megomendy wrote:

Simplelife4, that's great that you went up to talk to her. And we all love to hear those success stories.

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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Jun 17, 2014 09:06PM made2b2gether wrote:

Luah, thanks for the optimistic spin on things and you are absolutely right. Each treatment is individual and completing the current line of treatment and then monitoring it to further deal with it is surely the best approach.  We've got some ways to go so we'll go at it strong.  You stay well also. Appreciate you wrting. Please stay well :)

Dx 1/6/2014, IDC, 2cm, Stage II, Grade 3, ER-/PR-, HER2-
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Jun 19, 2014 01:42AM Lettinggo wrote:

Simplelife4, thanks for the response. I had no sentinel node biopsy before chemo at the initial diagnosis so now the entire medical team is left wondering if my nodes are involved and that if i will need radiation especially since the tumor is not detectable on the ultrasound.  So now my surgeon wants to leave the positive nodes in there if there are any and just add radiation.  After reading the posts on this site, i feel that radiation may be another good weapon to use again the TNBC so I do not mind that much any more. but my question for everyone is : does anyone out there have the same experience where their surgeon did not take the positive nodes out but just added radiation and expecting the radiation to take care of it? Thank. 

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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