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 10, 2018 05:25PM
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. :-)
Posts 31 - 60 (77 total)
Jan 5, 2019 08:49AM farmerlucy wrote:
I used that formula and it came up with numbers in the 20s. My score was much less. Grade and Ki-67 are subjective to the pathologist.
Jan 5, 2019 09:11AM KBeee wrote:
If the pathology lab made an error, maybe you want to get more specifics on that. There was an article in our local newspaper yesterday about a man who had prostrate surgery only to find out that he never had cancer; there was a bar coding error in the pathology lab. I think I'd want more details on that if I were you. I would want a copy of all reports, and would want a written description of what happened with your sample, where the error occurred, and what is in place to assure this error does not happen again in the future. It is complete;y unacceptable.
Jan 5, 2019 09:27AM DebAL wrote:
agree with KB. I'm sorry for the added stress. Waiting is hard enough. Your high PR is in your favor. Lower PR drives your score up. Hang in there
Jan 5, 2019 09:58AM - edited Jan 5, 2019 12:16PM by MCBaker
I found the McGee Equations page. With er & pr at 0, HER2 at 3, size at .3 cm, and KI-67 at 34%, I get a 43.4 on the third equation. The Nottingham score calculation is based on grade and lymph node and size. https://en.wikipedia.org/wiki/Nottingham_Prognosti... That is 2.06 for me, so I have to enter the minimum value of 3. The other two equations result in scores of 35.8 and 37.3.
Onco reported 7 to 10 percent of recurrence, which would be beyond nasty, and normal lifespan with chemo.
Low grade and stage means found early, high KI-67 means nasty if it hadn't been.
www.ncbi.nlm.nih.gov/pubmed/30... So this set of criteria said that there is no need, in my case, to send for oncotypeDX testing, since it was serious enough for chemo without reservation.
Jan 5, 2019 11:23AM windingshores wrote:
It is always possible to talk to the folks at Genomic Health, the maker of the Oncotype Dx. I called them a few times!
So sorry to hear about pathology error in sending sample. I got to know the pathology people- actually went in to meet them- because my samples were being sent all over the place. Nervewracking. I actually had my Oncotype done a second time and made sure it was the right tissue block.
I had grade 3 (one lab said grade 2), uncertain HER2 (finally resolved as negative), KI67% at 20, and Lymphovascular invasion, focal.
But my Oncotype score was 8. Go figure.
It is possible, someone told me, that the healing biopsy site might increase the Ki67% because healing cells are proliferating. I have no idea if this is true. For me, the other thing was that my biopsy results were HER2+ but post surgical results were equivocal then negative. I was told that biopsy result may have had a lot of DCIS in it, which tends to be HER2+.
So this stuff is complicated.
I went with the Onctoype score and had no chemo. None of us will ever be certain.
KI67% is only one of several proliferation measures in the test. I would have thought, with LVI, that my invasiveness score would have bumped it up, but maybe 95% ER and 80% PR bumped it way up.
Thirty percent of grade 3's have low Oncotype scores. Nothing is as it seems!!!!
Jan 5, 2019 11:25AM Cjzach10 wrote:
I see the oncologist on Monday for labs and to get started on tamoxifen. I'm afraid she's gonna get an earful. I'm going to ask her to call the pathologist and lab both to find out what happened and how they sre now so sure they have the right specimen. Yes this whole thing has me shaking in my boots! And the crappy thing is..we're at their mercy! If its the wrong specimen i will never know. And becsuse my bs didn't get lymph nodes this was such an important piece of the puzzle. And even more worrying is that when there's unsuccessful lymph node mapping studies show there's a higher incidence if lymph node involvement! My breast surgeon and oncologist are one if the best if not the best in Oklahoma city! My profession is in the medical field and I've lost all respect at this point.
Thank you ladies..you all understand and that means so much to me!💖
Jan 5, 2019 11:32AM Cjzach10 wrote:
I called the Genomics lab yesterday and all thry could tell me is that the specimen id number on the documentation from the order sent initially didn't match the specimen id number they received. Took them 10 days to get the specimen and then 7 days to do anything with it! So when your told 10 to 14 days that's after they recieve the specimen! So frustrating!!!
Jan 5, 2019 12:06PM HPFULL wrote:
if you got 100 pot both receptors you multiple then by 3 do you would put in 300 for each
Jan 5, 2019 12:15PM HPFULL wrote:
that is good to know it makes me hopeful. Did you multiple your hormone receptors by the different levels and add them
Before you plugged them in? My score has been delayed as well and so anxious .
So sorry Cjzach10 I sympathize and hope you get your results this coming week
Jan 5, 2019 12:30PM Cjzach10 wrote:
im sorry you're having to wait also! Its the worst! When i put in 300 it was between 12 and 16. So i guess intermediate. Im just hoping my high pr pushes under 10!
Hpfull what was your ki 67?
Jan 5, 2019 01:29PM HPFULL wrote:
my ki is 30. What is yours? I know all this waiting is painfu
Jan 5, 2019 02:33PM Cjzach10 wrote:
mine was also 30 :(
Jan 5, 2019 02:33PM - edited Jan 5, 2019 02:34PM by Cjzach10
Jan 5, 2019 03:02PM Cjzach10 wrote:
Thanks for the list kbee I think i will ask for all of those things!
Jan 5, 2019 07:59PM - edited Jan 5, 2019 08:00PM by stephilosphy00
Mine was the opposite, my Ki-67 at biopsy were low both in the breast tumor and lymph node (8% and 7.5%) but had high grade - grade 2 to 3. I had chemo before surgery and never got oncodx.
Jan 5, 2019 08:31PM - edited Jan 5, 2019 08:33PM by Meow13
steph..., do you try the calculator above? This one
Jan 5, 2019 09:49PM HPFULL wrote:
hi meow. Yes this is the same one as I posted above but maybe listed under another website ? My score varies as my range for Er is 98-100% so I put 300 for Er and feel good about that but my range for Pr is 41-50% so when I do what they say here to calculate:
All the required data is generally present in the surgical pathology report. The hormone receptor results will require the semi-quantitative H-score. If not reported initially, this can be easily calculated by the case pathologist by reviewing the immunohistochemical (IHC) stain slides. H-scores are calculated based on percentage of positive cells showing none, weak, moderate, or strong staining intensity. The score is given as the sum of the percent staining multiplied by an ordinal value corresponding to the intensity level (0=none, 1=weak, 2=moderate, 3=strong). With four intensity levels, the resulting score ranges from 0 (no staining in the tumor) to 300 (diffuse intense staining). For e.g. a tumor showing no staining in 10% cells, weak staining in 30% cells, moderate staining in 40% cells, and strong staining in 20% cells; the H-score will be calculated as follows: (0x10)+(1x30)+(2x40)+
I could have anywhere from 120 up so not sure. I enter it a bunch of different ways and I get anywhere from 16 to 20.
Jan 5, 2019 10:13PM Murfy wrote:
My Oncotype score was 52 and Magee equation scores averaged 28. I'm hoping the Magee scores are more accurate!
Jan 5, 2019 10:56PM stephilosphy00 wrote:
I got anywhere from 11 to 17 , low risk?
Jan 6, 2019 01:34AM HPFULL wrote:
I don’t know I still waiting on my score that’s why I am making myself crazy trying to figure out what it will be. I should stop obsessin
Jan 6, 2019 12:57PM HPFULL wrote:
Cjzach10 I want to call the genomic lab. Can I call and just give my name and they will give me the status
Jan 6, 2019 01:42PM MCBaker wrote:
You will have to give some other information just to verify that you are you. Hip-hip-HIPAA
Jan 6, 2019 01:52PM Cjzach10 wrote:
They should talk to you too. The number i got us 1 855 500 0275. Good luck i hope you get some answers!
Jan 6, 2019 02:00PM HPFULL wrote:
they won’t tell you results if they have it will they
Jan 6, 2019 02:42PM Cjzach10 wrote:
No the results will have to come from your dr. They may tell you how much longer. It doesn't hurt to ask whatever you want!