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Oncotype delayed - 3 weeks

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btwnstars
btwnstars Member Posts: 81

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!

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  • alicebastable
    alicebastable Member Posts: 1,945
    edited June 2021
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    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!

  • btwnstars
    btwnstars Member Posts: 81
    edited June 2021
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    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.


  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 155
    edited June 2021
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    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.

  • jhl
    jhl Member Posts: 174
    edited June 2021
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    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.

  • wallycat
    wallycat Member Posts: 1,313
    edited June 2021
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    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.


  • btwnstars
    btwnstars Member Posts: 81
    edited June 2021
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    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...

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 155
    edited June 2021
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    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

  • btwnstars
    btwnstars Member Posts: 81
    edited June 2021
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    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....

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 155
    edited June 2021
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    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


  • Valsc
    Valsc Member Posts: 4
    edited June 2021
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    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?

  • salamandra
    salamandra Member Posts: 745
    edited June 2021
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    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!

  • ava55
    ava55 Member Posts: 42
    edited March 2022
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    I am waiting for my oncotype scores and am so worried that it will be high. My details are 5mm of IDC Stage 1 grade 2 (no lymph nodes invasion following bilateral mx) ER/PR positive Her negative.

    Any advice or similar cases would be much appreciated as to what to expect (in the long wait for the Onctotype score).

    I am worried as surgeon said 90-95% it could come out low, however following the Bilateral MX I had a 20% chance of upgrading DCIS to IDC and that happened so I am terrified of being in the unlucky 5-10%. Any advice very welcome.

    Other details

    IDC NST -5mm, grade 2 (tubules 3, nuclear pleomorphism 3, mitotic activity 1)

    Posterior margin: >10mm from IDC

    Oestrogen receptor shows strong positivity in 80-100% of invasive tumour cells

    Progesterone receptor shows strong positivity in 80-100% of invasive tumour cells

    Her2 negative


  • rah2464
    rah2464 Member Posts: 1,192
    edited March 2022
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    ava55 - I, too, got the dreaded "upgrade" from DCIS to IDC upon final pathology. My Oncotype came it at 12, so you do have a shot at not requiring chemo even with the revised pathology. My mass was also more than double the size of yours - 13mm. Sending you wishes for a low onco.

  • ava55
    ava55 Member Posts: 42
    edited March 2022
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    Thanks for sharing that re your oncotype. It is comforting to hope that mine will be low too. From saying at the start of all this, it was stage 0 when I had DCIS to havinga full Mastectomy to get rid of it to the upgrade is a lot to take when it’s so early. Interestingly I didn’t even have a lump and only went for a first mammogram as a precaution.

  • rah2464
    rah2464 Member Posts: 1,192
    edited March 2022
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    This is one of the more difficult things about breast cancer diagnosis. You get you information in bits and pieces for a while. You truly don't know what your treatment plan will be until you get final surgical pathology because things can change. Tumor size, margins, type, etc. Unfortunately it seems to be one aspect that the doctors don't always warn you of, perhaps because that doesn't happen for the larger percentage of patients. I did as you, originally diagnosed as DCIS, went for the double mastectomy in hopes of avoiding both radiation and hormonal therapy. I did know going in that I was at risk for requiring radiation as my mass was close to the chest wall, so if we didn't obtain clean margins, well my gamble would haven't paid off. It is definitely a head game until you get your final treatment plan in place.

  • ava55
    ava55 Member Posts: 42
    edited March 2022
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    Thanks for the post, yes the drips and drabs of info from when I started to now and the waiting is so hard, especially when they give you stats that lead you to think you could be ok. It’s so hard waiting and stressing. The MX was a walk in the park compared to this.

    I am worried as when I examined my grade 2 it was only one point off grade 3 and think that puts me in greater risk for a high oncotype score but I just don’t know?

    I think the size of the tumour doesn’t get factored into this test.

  • btwnstars
    btwnstars Member Posts: 81
    edited March 2022
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    Ava55, I know probably not what you want to hear, but you can't predict oncotype from pathology. I am not an expert, but oncotype has to do with examining the cancer cells further and how they look/react, etc. As nerve-wracking as it is to wait, it's really a great tool that exists now and didn't for so many diagnosed with breast cancer, even 10ish years ago.

    In my case my pathology would not have necessarily prescribed chemo, but the oncotype revealed some characteristics in my cancer that suggested it. While I was scared and nervous about chemo, expecting the worse, I am glad I went through with it and in hindsight, learning more about cancer and treatments, it was definitely the right approach.

    I hope you have a good outcome and can avoid chemo. I did have chemo and it was not nearly as bad as I imagined it. My side effects were manageable. I did chemo from July-Oct last year and I've been back at work full time, going to the office, long commute, maintaining my energy just fine, dealing with minimal side effects from hormone therapy. If it wasn't for my short hair cut, and smaller chest size, it's like nothing has changed. But I know when you are in the beginning of diagnosis, it's really hard to imagine better days ahead.

    Stay positive and I hope you get your results and your treatment plan prepared soon.

  • ava55
    ava55 Member Posts: 42
    edited March 2022
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    thanks Btwnstars for your post. Yes I am trying to predict the unpredictable and you’re right it’s all so daunting especially as I am back at work after mx and this wait for the results is just really stressing me out. Reading all the posts is scary too as optimism goes out the window when you see a high oncotype score in case the worst is yet to come. It’s also very isolating as my family and partner just say it will be fine and the results will be positive which is frustrating too even though I know they mean well. As that’s what they said before I got the upgrade from DCIS to IDC. But I will keep hoping.

  • ava55
    ava55 Member Posts: 42
    edited May 2022
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    Some good news to report; the results of the oncotype came back that it was too small to sample (5mm) and so I am just on tamoxifen now and chemo was ruled out.

    Thanks all for the support.