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Topic: Oncotype delayed - 3 weeks

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: Jun 4, 2021 12:36PM

BtwnStars wrote:

I think this is just a vent! But I had surgery May 12th. They said 2 weeks for oncotype score results. I called last Friday and they said they still didn't have results and as soon as nurses get it they let doctor know then I should know. So now its 3+ weeks post-op and still no score. I have my MO appt scheduled for next week, but may have to move back without results. I got in touch with nurse navigator yesterday and she said they were looking into it and were in touch with the lab to try to get results released. It makes me nervous like did they mess something up? Is the sample ok?

Then on top of it my family and SO are concerned and keep asking, inquiring. Then I kind of feel pressure to try to find out, but the best I can do is leave a voicemail at the office and send email inquiries. At the same time, I'm trying not to let my life revolve around this diagnosis which is hard for others to understand I guess. Which I understand that they are just concerned, but it almost turns into like me feeling pressure to have an answer for them!

Anyone else have a longer than expected wait? I feel like I continually read about delays with offices getting back to us. I like my doctors and they are great surgeons, but they spell out all these resources, but then it feels like it comes up short. I also feel like they can only handle one question at a time, like I try to follow-up with a few other things I have going on with healing/scarring to make sure I am on the right track, but they seem to only answer 1 question. I know they are busy and probably doing their best. But when it's your care on the line, you just want answers. Very frustrating!

Dx: IDC, Stage 1A, grade 2, ER+/PR+, HER2-
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Jun 4, 2021 12:59PM - edited Jun 4, 2021 05:14PM by AliceBastable

It can happen, could be a temporary staff shortage at the lab, an equipment breakdown, any number of things. I had my surgery on July 11, 2018, and was scheduled for a re-excision on August 3rd. I was supposed to get a port put in at the same time because I'd had micromets in my sentinel node. I was frantically calling my MO and BS to see if the Oncotype had showed up - finally, my MO called me the day before surgery, while she was eating lunch, to let me know the score put me in the no-chemo range. Whew! Don't panic yet!

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Jun 4, 2021 04:33PM BtwnStars wrote:

Thank you Alice!

I just wanted to come back and update in case anyone else finds themselves in my shoes... Just got off the phone with my surgeon and she informed me that the company that used to do the oncotype scores was sold to a new one about 3-4 months ago. She stated this new company is just not good with customer service and getting back to the doctors/hospitals with info. She said they also tend to delay/mess up things with insurance and they are super frustrated by it too. She said they have been submitting complaints where they can.

While I feel better that they are on top of it, it is a shame that's the situation. She understands my anxiety and they are going to call first thing Monday again to try to get some answers. She also took some time to answer my questions about the lump under my lymph node incision and various healing rates, so I feel a little better now.


Dx: IDC, Stage 1A, grade 2, ER+/PR+, HER2-
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Jun 4, 2021 04:38PM Monarchandthemilkweed wrote:

I had my surgery may 10. I saw my onc two weeks after that and THAT’S when he ordered the Mammaprint. Even though I saw him prior to my surgery. The Mammaprint that I’m having done is part of a clinical trial so I had to sign a bunch of paperwork. I see my onc on June 14. They hope my results would be back by then. I share your frustration. I want to try and get on with my life too. It’s hard when you might have to do chemo. My dr said in my case there is no rush with chemo if needed or starting tamoxifen.

Sarah, Chek2 positive Dx 3/11/2021, IDC, Left, <1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/10/2021 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/28/2021 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jun 4, 2021 04:48PM jhl wrote:

Btwn,

Actually Genomic Health was sold to Exact Sciences last November. I don't think it has really changed much in the way of how fast tests are resulted. You can actually call or email OncotypeIQ yourself at 1-866-662-6897 or customerservice@genomichealth.com. They will give you your result if they have it. You won't get the complete explanation perhaps but that can come later.

Good luck.

Dx 11/15/2019, IDC: Cribriform, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- (FISH)
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Jun 6, 2021 11:20AM wallycat wrote:

My first oncologist (14 years ago) simply decided he didn't want to send it in because he was "convinced" I would score low. Idiot. I ran it up to his superiors and he finally sent it in...that was over a month after my surgery. Needless to say, I fired him and found a new onco (this was when we lived in WI).

The idiot was shocked I was in the gray area. SO much for being convinced.


Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Jun 10, 2021 09:52AM BtwnStars wrote:

I finally got my results 27 days post-op and wish I hadn't! Score is 28, so I will be starting chemo (AC+T) instead of radiation. I met with MO yesterday. It's still all a little bit overwhelming. If one more person says "well you're young and healthy" or "you're young & otherwise healthy".... I have been doing all the comparison charts and looking at everything, and it seems like the chemo is the way. My BS said she would do it if she was me. I know I can do it, I just fear the down-the-road complications/SEs. And the medicines...all the extra medicines...I am not a medicine taker, so it's hard for me to wrap my head around that. Oh well, off to the chemo topics now...

Dx: IDC, Stage 1A, grade 2, ER+/PR+, HER2-
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Jun 10, 2021 10:24AM Monarchandthemilkweed wrote:

btwnthestars, I’m sorry about your results. I fear the same results. Yours is a grade 2 as is mine. Ugh. There is so much waiting. When do you start chemo

Sarah, Chek2 positive Dx 3/11/2021, IDC, Left, <1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/10/2021 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/28/2021 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jun 10, 2021 01:47PM BtwnStars wrote:

Monarch, you really never know. My doctors kept saying things like "caught it early, early stage, young and healthy, you will live to 100, etc" but the cancer decides the make up of the tumor and how the test results come out...so you just don't know based on that early diagnosis. I pray you get an answer soon.

Correct me if I'm wrong, but does having the Chek2 mean chemo is required? I actually have a friend who had bc and has the check2, so a bit familiar. I know she and her brother both have it and I believe he either had prostrate cancer or did a procedure to prevent it, can't remember which. But I think they are in some sort of study to monitor their pancreas. I believe its with University of Penn, not sure if something may be available to you since you are in PA.

Right now I start June 30th, but omg there is so much to do before that...she wanted to start in 2 weeks, but I have a follow-up with PS, have to schedule the port, which means more pre-admission testing, have to do an echo cardiogram to check heart bcz of chemo drug, other blood work. And on top of that, figure out what I am doing with my job, talk to boss, get head wraps, etc. I guess the busyness is good for the mind, but I also just want to kind of relish these 2 weeks before I go down the next 16 of hell....

Dx: IDC, Stage 1A, grade 2, ER+/PR+, HER2-
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Jun 10, 2021 02:20PM Monarchandthemilkweed wrote:

that’s interesting. No my onc said having chek2 doesn’t change anything as far treatment. Maybe just monitor me More closely and do tamoxifen for 10 instead of 5. I just turned 45. The whole thing is nerve racking. I’m feeling anxious again as I was in the beginning. Nobody has told us about pancreas but it seems more and more cancers are showing an association with chek2 My sister has a rare case of ovarian after hysterectomy I hate cancer

Good luck with all the crap you have to do before chemo starts Thinking of you


Sarah, Chek2 positive Dx 3/11/2021, IDC, Left, <1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/10/2021 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/28/2021 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jun 13, 2021 06:06PM Valsc wrote:

jhi

You were a lifesaver! I called the exact science number (it had been 2 weeks) and found out that they were waiting on info from my facility. I called my nurse Navigator with what I heard and they got it straightened out.. my specimen began processing that afternoon. Yeh!! I should get it back late this week.

I have a question for the group: my tumor is 99% Estrogen positive but only 25% progesterone (intensity 1) positive. It puts PGR ALLred score at 4 which is weakly positive. I have 2.1 cm tumor with 1 positive lymph node. I am post menopausal..

Won’t the low progesterone expression lead to a high oncotype score? Did anyone else have a low progesterone expression and end up with a low oncotype?

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Jun 13, 2021 09:21PM Salamandra wrote:

You can't really accurately predict oncotype scores from hormone scores. If you could, there would be no benefit from the oncotype process! There are generalizations that are possible - in which cases it is more likely to get a lower or higher oncotype - but the real value of oncotype is especially for those cases when doctors would have predicted low benefit of chemo but it turns out to be really necessary, or would have predicted high value of chemo but it turns out to not be indicated.

25% may be relatively low but it is a lot higher than none!

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 Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy 12/19/2019 Fareston (toremifene)

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