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Topic: High Ki-67, but low grade and stage?

Forum: Diagnosed and Waiting for Test Results —

Share with and support others all waiting for test results from CAT scan, PET scan, Oncotype tests, Mammaprint, FISH, IHC, and other diagnostic tests.

Posted on: Dec 11, 2018 09:25AM

evily wrote:

Hi all!

I am currently recovering from a BMX and am getting ready to start my next phase of treatment, whatever that may be. I met with the MO today for the first time. He is saying definitely tamoxifen for 5 yrs, which I expected given my age and cancer type. But the issue of chemo is a big question mark still. He is going to run the Mammaprint test on my cancer because, even though I was Stage I, Grade 1 with no nodes involved, my Ki-67 is 60%, which is very high. Has anyone else had a similar situation - high Ki-67 but early stage / low grade? The MO said if Mammaprint comes back high risk, he would recommend 4 rounds of chemo. It terrifies me to my very core, but I am young and want to make sure I do what needs to be done to live a long healthy life. Appreciate any feedback. :-)

Dx at age 40 Dx 10/10/2018, LCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 11/13/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jan 7, 2019 07:34AM Salamandra wrote:

I hadn't seen the Magee calculator before. I never got a ki-67, but I do already know my oncotype score (9). I was wondering if I could 'backwards engineer' the ki-67 that way.

Playing around with the info from my pathology report (100% strong estrogen, 90% moderate progesterone, grade 6 Nottingham), it is impossible to come close to my oncotype score even if I put the ki-67 at 0.01%. The 3 equations go 12 (eq3, which ignores the Nottingham),14 (Eq1, which uses everything), and 16 (eq 3, which ignores the ki-67 - and is the only one I could calculate without entering a ki-67). So I don't think ki-67 can really be determinative.

On the one hand, these are all too high. On the other hand, 18 and under is considered low risk, and they are all low risk, so for practical purposes of deciding chemo or not, it would have got me to the exact same place.

They don't send the whole tumor to oncotype... so oncotype is getting, I think, more of a biopsy sized part of the tumor. My biopsy pathology was definitely more favorable than my lumpectomy pathology - it was higher PR and only grade 1. So I was a bit worried that oncotype could also be deceptively favorable. On the other hand, DNA is DNA. Right?? I wish I had more science background now. But my DNA from the tiniest sample or a large sample should be the same, is that accurate?

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 7, 2019 12:27PM - edited Jan 7, 2019 12:30PM by HPFULL

I asked my breast surgeon because my initial biopsy showed 100% ER0% PR and low proliferation and My pathology after surgery 91% to 100% ER 41 to 50% PR and high poliferation. Maybe I’ll call the lab tomorrow and see what they actually do I’m curious.

Hugs

Dx 10/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH)
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Jan 7, 2019 02:32PM - edited Jan 12, 2019 04:02PM by thecargirl

My Oncotype test was 32, the Magee scale is low teens. My doctor never took the test seriously, Mucinous Breast Cancer based on her data does not respond the same to the testing. The Oncotype RS scores, low, medium or high results in 1200 Mucinous Breast Cancer patients had the same living statistics however they scored.

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Jan 8, 2019 04:35AM HPFULL wrote:

They just pushed my Oncotype test results back to "possibly" Friday. I was supposed to have the results last Thursday 😢 this is really making me crazy

Dx 10/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH)
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Jan 8, 2019 10:48AM Cjzach10 wrote:

I had my oncologist appt today. I didn't leave feeling much better about the whole screw up. The oncologist feels like its ok since oncotype caught it and it caused them to double check everything with the pathologist. I asked to see documentation and I could tell it wasn't going to be easy and honestly i don't have the energy to fight for it right now. I haven't decided if im going to call the pathologist directly or not. I don't know how to feel about anything right now! Its exhausting! I did start on femara not tamoxifen since it has a a risk of clots snd ive had a small stroke. So ill start that tomorrow..hoping for 0 side effects!

hpfull im so sorry your in the same boat. My dr said they were seeing it take longer and longer for results. Which didn't make me feel any better. Now i dont see her again until jan 22 but I'm gonna call every day starting on the 17th. Thats when oncotype said they have the results to the oncologist.

Thanks for listening!

Dx 9/11/2018, IDC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH) Surgery 11/11/2018 Lumpectomy: Left; Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Jan 8, 2019 04:31PM HPFULL wrote:

I am so sorry Cjzach10. It’s not fair that you have been on this roller coaster for so long. Did they mix up your sample or are they retesting it t? When I called today they said they had to run additional testing on my tissue sample to insure accuracy. Sure sounds like something is up with the Oncotype Lab. Seems like lots of people are having similar issues. So hard when your life is in limbo. I hope you get answer soo

Dx 10/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH)
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Jan 8, 2019 05:51PM Cjzach10 wrote:

Hpfull

My oncologist ordered the test and sent my h and p to oncotype on dec 17. Same day she called and told me she ordered it. Oncotype didn't receive the specimen from the pathologist until dec 27. Specimens come with what he called a block id number. Don't understand exactly what that is. Then with the holidays no one did anything with it until jan 3rd. When they went to verify the specimen with the initial documentation sent on the 17th one of the numbers didn't mstch up. So they immediate called the pathologist and was able to determine it was my specimen based on a few other identifying criteria. So the test was never started..thank goodness..until they were able to follow protocol and use other forms of identification to make sure it was correct. They started testing on jan 4th. I wonder in your case if it had anything to do with the size of the sample. My oncologist said today that there are varying amounts of tissue in the block or slide. Sometimes not enough to complete the test and may have to request more. Sometimes there isnt more. Based on your 2cm you'd think there would be plenty. I'm so curious to see what our scores will be. The waiting is so hard! I hope you hear before Friday!


Dx 9/11/2018, IDC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH) Surgery 11/11/2018 Lumpectomy: Left; Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Jan 9, 2019 05:18AM KBeee wrote:

You definitely can call the patholigists office. I always called mine beofre I picked up my results.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/25/2013 Mastectomy: Left, Right Chemotherapy 9/19/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/11/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/22/2014 Reconstruction (left); Reconstruction (right) Surgery 1/28/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Surgery 2/24/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Chemotherapy 3/30/2015 AC + T (Taxol) Radiation Therapy 8/24/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Jan 9, 2019 05:19PM HPFULL wrote:

Salamandra I get 10s for the 1st 2 equations and 13 for the middle when I plug in your number 300 Er 270 Er 6 Nottingham I put 1 for tumor size because I don’t know if yours was exactly 1cm but that what your info says based on that I think you had very low proliferation or ki67. Not certain as I am definetly not a pathologist lo

Dx 10/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH)
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Jan 11, 2019 02:53PM HPFULL wrote:

been thinking of you Cjzach10 🙂 did you get your results? I think you and I had similar initial pathology results. My score came in at 15 so no chemo 🙌 Hoping your score is low as wel

Dx 10/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH)
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Jan 11, 2019 03:32PM Cjzach10 wrote:

So happy for you hpfull! Yes my dr called today..my score was 10! No chemo!! Im still skeptical of the entire situation with the mistake. Idk what happened for me to get results so much faster. The lab said it would be 14 days from the 4th. But I've resigned myself to the fact ill never know for sure if everything ended up being done correctly and I'll have to just trust it was. I've never been so relieved!

Dx 9/11/2018, IDC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH) Surgery 11/11/2018 Lumpectomy: Left; Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Jan 11, 2019 03:43PM HPFULL wrote:

That's great news CJZach10! You were hoping for a 10. I am sooooo happy for you :)  Yes not sure what was going on with the lab. I talked to them Tuesday and they said I wouldn't have my results until at least Friday at the earliest and even if they did I would get them because they were still waiting for pre-authorization from my insurance. I called my insurance and was a wreck and in tears. My onc called to cancel my appointment Tuesday since no results were available and then all of a sudden Wed. morning the onc called and said results are in. So strange. I am just so happy to final know.

Dx 10/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH)
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Jan 11, 2019 06:20PM Meow13 wrote:

Great news.

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Jan 12, 2019 12:51AM Salamandra wrote:

Great news HPFULL and Cjzach10! Especially after all the stressful waiting!

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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