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

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 3/25/2021: IDC, Left 1.5 cm, Stage IB/IIA, grade 2, ER+/PR+, HER2- Surgery 5/12/21 Lumpectomy, Oncoplastic reduction, sentinel lymph node removal 0/6 Chemotherapy 6/30/21 AC+T
Log in to post a reply

Page 2 of 2 (19 results)

Log in to post a reply

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- Surgery 10/18/2018 Lumpectomy; Lymph node removal 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)
Log in to post a reply

Mar 15, 2022 07:30PM ava55 wrote:

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


DCIS 8cm, intermediate, ER positive, mastectomy plus ADM reconstruction with implant plus sentinel node biopsy. 0/3 nodes clear. 5mm IDC. ER/PR positive HER negative
Log in to post a reply

Mar 16, 2022 06:01AM rah2464 wrote:

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.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 6/27/2018 Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant Hormonal Therapy 7/27/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Mar 16, 2022 02:14PM ava55 wrote:

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.

DCIS 8cm, intermediate, ER positive, mastectomy plus ADM reconstruction with implant plus sentinel node biopsy. 0/3 nodes clear. 5mm IDC. ER/PR positive HER negative
Log in to post a reply

Mar 17, 2022 06:42AM rah2464 wrote:

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.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 6/27/2018 Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant Hormonal Therapy 7/27/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Mar 18, 2022 01:58PM ava55 wrote:

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.

DCIS 8cm, intermediate, ER positive, mastectomy plus ADM reconstruction with implant plus sentinel node biopsy. 0/3 nodes clear. 5mm IDC. ER/PR positive HER negative
Log in to post a reply

Mar 18, 2022 04:07PM btwnstars wrote:

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.

Dx 3/25/2021: IDC, Left 1.5 cm, Stage IB/IIA, grade 2, ER+/PR+, HER2- Surgery 5/12/21 Lumpectomy, Oncoplastic reduction, sentinel lymph node removal 0/6 Chemotherapy 6/30/21 AC+T
Log in to post a reply

Mar 18, 2022 05:56PM ava55 wrote:

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.

DCIS 8cm, intermediate, ER positive, mastectomy plus ADM reconstruction with implant plus sentinel node biopsy. 0/3 nodes clear. 5mm IDC. ER/PR positive HER negative
Log in to post a reply

May 28, 2022 01:58PM ava55 wrote:

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.

DCIS 8cm, intermediate, ER positive, mastectomy plus ADM reconstruction with implant plus sentinel node biopsy. 0/3 nodes clear. 5mm IDC. ER/PR positive HER negative

Page 2 of 2 (19 results)

Scroll to top button