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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 02:43PM - edited Mar 2, 2012 02:44PM 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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Posts 31 - 42 (42 total)

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Jun 6, 2013 09:29PM jsrose14 wrote:

Ken-
My breast surgeon describes the ki-67 as the "poor mans" test and basically said that the oncotype test trumps it all. Did anyone talk about the oncotype test for your wife yet? If she doesn't have positive nodes I think this test would be the standard way that most oncs usefor the decision on chemo.

Hope that helps. Good luck!

Jsrose

BRCA2+, Oncotype score 16, LVI found in pathology Dx 1/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 3/6/2013 Lymph node removal: Left; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 5/1/2013 CMF Hormonal Therapy 9/7/2013 Arimidex (anastrozole)
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Jun 9, 2013 03:25PM bluepearl wrote:

Jenlee: you are doing everything right and your are still stage 2a, medium grade and CLEAN nodes, with other favorable prognostic factors (ER/PR+ and Her neg). Chemo wipes up fast growing cells like yours as if the dirty little devils sucked up the poisons with a straw...hence why your tumor responded so well.

Dx 1/6/2011, IDC, 1cm, Stage I, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 2/11/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Dx 2/2013, IDC, <1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 3/9/2013 Lymph node removal: Right, Sentinel; Mastectomy: Right Hormonal Therapy 3/17/2013
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Jun 9, 2013 03:30PM Lily55 wrote:

I had two ki 67 tests done, one was 95 and the other 25 percent.......

Dx 4/2012, ILC, 5cm, Stage IIIA, Grade 2, 7/14 nodes, ER+/PR+, HER2- Surgery 5/2/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 8/14/2012 Breast, Lymph nodes Hormonal Therapy 7/18/2013 Aromasin (exemestane) Radiation Therapy 3/7/2019 External: Bone Chemotherapy Taxol (paclitaxel)
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Jun 7, 2016 07:37PM GoodVibrations wrote:

So I just posted the below in a topics forum and then noticed your post.. I am a newby.. but now i think I know why my BS is so upset.. My path report said

Ki-67 HIGH (80%) now i know this is bad.. any words or thoughts ? I am stage 1



I am 56, healthy and active with no family history of breast cancer. I have had annual mamograms ..forever..

I felt a lump 4 years ago.. it was a cyst..No further issues. I have now felt another lump at the same location of the last cyst..But this time there was some tingling and itching.MyOct 2014 negative no issues..I go in for a mammogram with a specialist. Radiologist is concerned,so schedules me for needle biopsy( 2 suspicious sites).Here is the path report. Only left breast involved

Good news- I think..Estrogen and Progesterone Pos and Her2 Negative (0) but...Ki-67 HIGH (80%)

areaA- DCIS at least 1.0cm nuclear grade 2, Comedonecrosis

Area B- Microinvasive ductal Carcinoma 1.5mm thats MM! 2 foci

Only Microinvasion present

Associated DCIS grade intermediate central luminal necrosis present

I thought this was a "great cancer" to have.. but my breast surgeon look like shes highly concerned and ordering another biopsy and a breast MRI.

She is one of the best and I have a family member that is an MD.BS is saying mastectomy ..why is she saying this from these results..Can anyone help me with what the BS is thinking is so wrong that has me meeting with a platic surgeon asap..I thought standard thinking was a lumpectomy..what am I missing?
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Jun 7, 2016 09:31PM - edited Jun 7, 2016 09:32PM by farmerlucy

This Post was deleted by farmerlucy.
Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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Jun 7, 2016 09:33PM farmerlucy wrote:

Sorry - I was replying to the wrong post. I hope you get some answers soon. Gentle hug.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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Jun 30, 2016 04:10AM 4everStrong wrote:

Any other stores?

Dx at my 39th birthday!_ have two litlle girls 3 & 6 _ Ki67 80% _delayed radiation by 1 month because of an open wound after surgery _ taking vitamin D Dx 12/5/2015, IDC, Left, 4cm, Stage IIIA, Grade 3, 3/14 nodes, ER-/PR-, HER2- Chemotherapy 12/13/2015 Cytoxan (cyclophosphamide), Ellence (epirubicin) Surgery 3/15/2016 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary; Reconstruction (right) Radiation Therapy 6/5/2016 Whole-breast: Breast, Lymph nodes, Chest wall Radiation Therapy 8/15/2016 Whole-breast: Breast
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Feb 16, 2017 03:58PM yodez75 wrote:

I completed chemo on 1/12/127 after 16 rounds. I had my first followup appt with my onc today and all seems well. My ki-67 was 95%. My onc told me I am high risk for relapse...which scared me. It's good to know there are others out there with a high ki67 and doing well even years after dx. God bless u all!

Dx 6/6/2016, IDC, Left, 4cm, Stage IIA, Grade 3, 0/5 nodes, ER-/PR-, HER2- Surgery 6/19/2016 Mastectomy: Left Chemotherapy 7/21/2016 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel)
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Sep 5, 2020 12:14AM - edited Sep 5, 2020 12:14AM by jenlee

Wow, I just logged back on for the first time on a few years and was looking at my “favorites."

My tumor was 4 cm, which was considered large and my Ki67 was 75%. My daughter was eight years old when I made the original post and I was halfway through chemo. By the time I completed chemo, there wasn't much left of the tumor. Shortly afterwards, I had a lumpectomy and the pathology of what was removed was just DCIS. A few weeks after that, I had a bilateral mastectomy with reconstruction.

For the first few years, not an hour went by that I wasn't worrying about cancer and dying. I was a nervous wreck. I wondered if there would ever be a time that I didn't worry.

Eight years later, still alive😂 I don't think about cancer every hour, nor every day. Maybe not even every week. My daughter is now sixteen and is a young woman. I thought that perhaps I could reassure some of you that are newly diagnosed and worried.

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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Sep 5, 2020 08:35PM Tenacity83 wrote:

Interesting topic! Thanks for bringing it into 2020, Jenlee!

I was horrified when I was teaching myself about Ki-67 scores and sites like breastcancer.org were saying "6% is considered low, 6-10% intermediate, and more than 10% is considered high." My Ki-67 score was 80%. I couldn't wrap my head around what that meant! When I told my oncologist I was worried, he said that it wouldn't matter.

I'm glad to see that I'm not the only one with a high score and that others are doing well!! My golf ball sized tumor may have initially been growing fast but before I finished 12 weeks of taxol and 4 infusions of herceptin and perjeta, it (previously 3cm) disappeared from my pre-surgical MRI. I had a pathological complete response to chemo so there was no cancer detected at the time of surgery!!

Dx: 12/16/19 (at 36) with HER2 +++ Stage II IDC. Biallelic (2) CHEK2 mutations. Tx: Taxol, Herceptin & Perjeta. Lumpectomy 5/6/20. Bilateral Mastectomy w/ tissue expanders 6/22/20. Began Lupron shots 6/3/20 & Leprozole 8/3/20.
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Sep 10, 2020 11:14AM KMom57 wrote:

Jenlee, thank you for taking the time to post. I’m in the thick of it, and cried when I read your post, particularly about your daughter now being a young lady, as I have a young daughter too. Thank you for the encouragement.

Dx 10/2019, ILC, Left, 2cm, Stage IIIA, Grade 2, 8/11 nodes, ER+/PR+, HER2- Hormonal Therapy 11/6/2019 Femara (letrozole) Surgery 2/14/2020 Prophylactic ovary removal Surgery 5/17/2020 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 7/30/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Sep 10, 2020 11:59AM - edited Sep 10, 2020 12:00PM by LisaEllen

I am a 17 year survivor!!

My tumor was fast growing as well. I do not remember my ki67 score. But I remember being terrified by my recurrence rate quoted to me at my initial visit.I was told the tumor was aggressive. I had a self exam three months prior to diagnosis and an OBGYN exam five months prior that did not detect it. This is significant because the tumor was on the chest wall above my breast, and I was also smaller than an A cup. Chemo and surgery got that number down to a 17% recurrence rate. Happy to say I've never had cancer rear its ugly head since. I've been happy with my decision to have bi-lateral mastectomies with reconstruction as well as dose dense chemo. I have upgraded my cup size ;)

I can't do push-ups, but I couldn't do them before either, haha. I can do anything and everything else, and I am very grateful.

Hang in there ladies, you have an army of supporters here who wish and pray for your healing!!!!! Virtual hugs

Dx 3-18-07,2.2cm tumor,stageII,grade3,8 rounds ACT,no rads,Infiltrating ductal,0nodes, bi-latmast.10-07,expanders2-27-08, implants with tattoo nipples

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