Topic: Any high Ki67 survivor stories out there?

Forum: Who or What Inspires You? — Share your personal story, diagnosis, and treatment path, and stories of survival, hope, and success to encourage and inspire others!

Posted on: Mar 2, 2012 08:43PM - edited Mar 2, 2012 08:44PM by jenlee

Posted on: Mar 2, 2012 08:43PM - edited Mar 2, 2012 08:44PM by jenlee

jenlee wrote:

I would LOVE to hear from ANY survivors who had high Ki67 !!!!  (Also hormone positive with high Ki67).  My Ki67 is 75%, which feels like a death sentence, even though half way through chemo, the tumor has shrunk by about 80%.  It has been an emotionally challenging week and I could use some positive (really positive) stories.
Jenifer, completed TAC x 8 on 4/24/2012. Lumpectomy on 5/23/2012. BMX & immediate DIEH stage 1 on 6/5/2012 NOLA; stage 2 surgery 10/4/12 NOLA. Tamoxifen since 6/2012. Switched to Arimidex 9/2013. Dx 10/20/2011, IDC, 4cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Mar 2, 2012 09:28PM SusansGarden wrote:

I'm fairly newly diagnosed..so not sure what help I'll be... but I did have "high" Ki67.  Report said >20%...I never did find out what the actual number was.

My onc said the Ki67 was just ONE of the characteristics of the tumor...and you have to take all the variables together.  I noticed you are Grade 2 (as opposed to Grade 3), with no node involvement.  Right there are two very positives! :) .... also being hormone positive and HER2 negative is great.  Did you have an oncotype test done?... I'm assuming not since you are doing neoadjuvant chemo.  I had the oncotype test done and had a "low score" even though my Ki67% was high.  So just being high Ki67 does not necessarily mean you have a really aggressive tumor.   Because of my low oncotype score (and my tumor was <2cm) we chose not to do chemo.  But since you are doing chemo then I assume you will be taking either Tamoxifen or an AI...you are kicking cancer's but to the curb and I just wanted to tell you to hang in there and the stats are WAY in your favor! :)

"If you want to forget all your other troubles, wear too tight shoes." Dx 10/6/2010, IDC, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 11/30/2010 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 2/1/2011 Surgery 7/10/2013 Prophylactic ovary removal
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Mar 2, 2012 11:34PM thenewme wrote:

Hi Jenlee,

My ki-67 was 100%.  Yeah, really.   The bad news is it was growing like wildfire.  I know what you mean about feeling like you've been handed a death sentence.  The good news, though, is that chemo targets fast-growing cells.  Your tumor shrinkage indicates that it's working well for you.  It's a great sign. I'm sorry you're having a rough week.  Hang in there and please try to go easy on yourself.  It's such a hard spot you're in right now, but I want you to know it really does ease up, both physically and mentally.     

Are you having any side effect problems making things harder on you?  Do you have lots of support at home, especially with your daughter?  Are there things you might be able to ask friends or family to help with during this incredibly difficult time to help ease your burden?

I've passed my 3-year mark and I'm doing great!  It gets better. Hang in there!

Dx 11/2008, IDC, 5cm, Stage IIB, Grade 3, 0/9 nodes, ER-/PR-, HER2-
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Mar 3, 2012 03:19AM jenlee wrote:

Thanks for responding ladies. Glad to know you're both doing well!!  

susansgarden, no they didn't do oncotype because of the size of tumor & Ki67, so chemo was a given.  Oncotype is one of those things that I'd like to know if it's favorable, and don't want to know if it's not :)  Thank you so much for your encouragement. 

thenewme, I've had few side effects.  Starting to feel fatigue after 5 of 8 TACS, otherwise I've been incredibly blessed with manageable side effects.  So fortunately, I don't need much help with anything. Saving up all offers of help until my BMX.  My biggest problem is my morale, which I'm working on...  I came across a long thread about node-positive survivors, which was very inspiring.

So I'm hoping to be inspired by MORE high Ki-67 survivors...

Jenifer, completed TAC x 8 on 4/24/2012. Lumpectomy on 5/23/2012. BMX & immediate DIEH stage 1 on 6/5/2012 NOLA; stage 2 surgery 10/4/12 NOLA. Tamoxifen since 6/2012. Switched to Arimidex 9/2013. Dx 10/20/2011, IDC, 4cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Mar 3, 2012 03:21AM lrr4993 wrote:

I am only about 1 1/2 years out, but I was 98% Ki-67, TN, Grade 3, metaplastic.  I pretty much hit the agressive cancer lottery.  So far so good.

Lisa Dx 8/6/2010, IDC, Stage IB, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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Mar 3, 2012 06:01AM fightinhrd123 wrote:

Mine was high - I cant remember what it was and I have no clue where my report is, but I want to say it was either 60 or 80...I'm thinking 80.  Chemo killed it all, and im good so far.  Chemo loves fast dividing cells ;)
Laura
Dx 5/29/2008, IDC, 2cm, Stage IIB, Grade 2, 2/14 nodes, ER-/PR-, HER2+
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Mar 3, 2012 06:08AM weesa wrote:

Mine was very high--75%. Nodes were matted together, one node had a 2cm tumor wrapped around it.

Doing well.

Sometimes I wonder if I am an old soul temporarily trapped in a breast cancer body. Dx 11/22/2002, IDC, 6cm+, Stage IIIA, Grade 2, 5/25 nodes, ER+/PR+, HER2- Chemotherapy 1/20/2003 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 6/14/2003 Breast, Lymph nodes Hormonal Therapy 8/23/2003 Femara (letrozole) Surgery Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Latissimus dorsi flap
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Mar 3, 2012 06:24AM kathleen1966 wrote:

Wow!  I have no idea what any of my scores were but thanks for the heavy dose of feel good to my bones hope! Laughing 
Dx 7/26/2010, IDC, 1cm, Stage IIIA, Grade 2, 4/15 nodes, ER-/PR-, HER2- Dx 7/26/2010, DCIS, 6cm+, Stage IIIA, Grade 2, 4/15 nodes, ER-/PR-, HER2- Dx 7/26/2010, Paget's, 1cm, Stage IIIA, Grade 2, 4/15 nodes, ER-/PR-, HER2- Surgery 8/23/2010 Lymph node removal; Lymph node removal (Left): Sentinel, Underarm/Axillary; Mastectomy; Mastectomy (Left) Targeted Therapy 9/7/2010 Herceptin (trastuzumab) Chemotherapy 9/7/2010 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 3/1/2011 Breast, Lymph nodes
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Mar 3, 2012 05:16PM jenlee wrote:

Bump!

Jenifer, completed TAC x 8 on 4/24/2012. Lumpectomy on 5/23/2012. BMX & immediate DIEH stage 1 on 6/5/2012 NOLA; stage 2 surgery 10/4/12 NOLA. Tamoxifen since 6/2012. Switched to Arimidex 9/2013. Dx 10/20/2011, IDC, 4cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Mar 3, 2012 05:22PM thenewme wrote:

Weesa, I too had matted, clumped nodes.

Jenlee, if it's any comfort at all, your morale problem is very common at this point in treatment.  You're truly in the midst of a war, so try to give yourself permission to accept your fatigue and emotions.   Don't beat yourself up trying to fix things now.  Just do what you need to do to get by.  It's great that you're having fewer side effects than some, but don't underestimate the trauma you're dealing with.  

I'm saying this because honestly, in hindsight, I think I was too hard on myself and expected too much from myself when I was in the thick of things. 

Dx 11/2008, IDC, 5cm, Stage IIB, Grade 3, 0/9 nodes, ER-/PR-, HER2-
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Mar 4, 2012 05:08PM jenlee wrote:

Bump

Jenifer, completed TAC x 8 on 4/24/2012. Lumpectomy on 5/23/2012. BMX & immediate DIEH stage 1 on 6/5/2012 NOLA; stage 2 surgery 10/4/12 NOLA. Tamoxifen since 6/2012. Switched to Arimidex 9/2013. Dx 10/20/2011, IDC, 4cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2-

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