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Topic: Onctotype - Dr has had results for a week

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: Feb 17, 2020 12:24PM

ziggzmom wrote:

Hi all ~ I just am wanting to know if this is normal, as I have read several times about people getting their Oncotype results prior to visiting their dr. I found out today from Genomic Health that the results were relayed to my oncologist on the 10th. My dr office says the results will be given at my next appointment (20th), This, of course, immediately makes me think they are bad/high. Thoughts??? Patience is not my virtue and knowing they have been in for a week is really frustrating to me.

Dx 12/11/2019, IDC, Left, 2cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 1/13/2020 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary
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Feb 17, 2020 01:58PM Beesie wrote:

"This, of course, immediately makes me think they are bad/high"

Not necessarily. Some doctors like to control the information and control the narrative. They think that patients may not know how to correctly interpret the data (which of course is sometimes true) so they refuse to let the patient receive any information except directly from them.

I don't know if this explains your situation, but it is often what happens. It's not right, of course. The Oncotype score is your information about your cancer and you have every right to receive the info as soon as it is available.

You could call the doctor's office again and tell them that you've decided to come in to pick up a hard copy of the Oncotype patient's report, so that you have time to review the information provided by Genomic Health about your score, and can prepare your questions in advance of the meeting on the 20th. Do the presumptive close, i.e. tell them how it's going to happen and force them to either agree or explain why this isn't possible.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Feb 17, 2020 02:09PM ziggzmom wrote:

Thank you, Beesie, for this! I am sure you are correct about the information flow and I so appreciate your thoughts on picking up the copy of the report. You have made me feel both better and empowered!

Dx 12/11/2019, IDC, Left, 2cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 1/13/2020 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary
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Feb 17, 2020 07:08PM bella2013 wrote:

Ziggsmom, my nurse navigator was able to get my Oncotype Score for me

Diagnosed at 60 years old. Oncotype Score=14. Dx 12/4/2017, IDC, Left, 4cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 1/4/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 2/22/2018 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
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Feb 17, 2020 09:33PM Lucy55 wrote:

I love Bessie's advice ...that's what I'd do !!!

Dx 8/27/2014, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy 9/14/2014
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Feb 18, 2020 09:24AM SummerAngel wrote:

I didn't receive the results of my Oncotype until weeks after my doctor's office received it. It was just an oversight. I'd call and ask.

Age at dx: 45. Oncotype, left-side tumor: 9. Right side had multifocal IDC and "extensive" LCIS. Isolated tumor cells in 1 right-side node. Dx 3/27/2015, IDC, Left, 2cm, Stage IIA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 4/27/2015, IDC, Right, 1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 6/1/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right Surgery 6/1/2015 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/28/2015 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 12/4/2015 Reconstruction (left): Fat grafting, Nipple reconstruction; Reconstruction (right): Fat grafting, Nipple reconstruction
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Feb 18, 2020 09:46AM gb2115 wrote:

Working in a medical setting, I would say definitely don't assume the worst. They probably just want to tell you in person. If they call and tell you the Oncotype score without being able to explain and interpret, honestly, that would be bad practice. A nurse navigator or nurse calling to explain it to you would be sufficient. But if you have an appointment scheduled to see the doctor, it makes sense for them to wait. But I can tell you that in general, placing medical information with no explanation or context into the hands of a patient often does not go very well and I think does mental harm. We have patients who get direct access to lab work, and over the weekend access it, Google results to try to understand, and then worry themselves to death before we even have a chance to look at it and reach out. And it's usually something that didn't need to be worried about.

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.
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Feb 18, 2020 11:11AM Tmh0921 wrote:

My oncologist called me herself with my Oncotype results. Mine were higher than expected, which meant that she was recommending chemo whereas before she wasn't.

Most doctors want to discuss these things in person simply so that they can go over it in detail with you and what it means for you. They can also answer questions and have a dialogue with you. If you get the results outside of talking to your doctor and then have a lot of questions/anxiety about them you then have to wait to talk to the doctor (unless you can have your doctor call you outside of your visit).

I tend to be one that pushes to get my results ASAP before seeing the doctor. I have, however, been extremely lucky in my physicians. My pathology report from my breast biopsy came in on a Friday afternoon when my surgeon was in surgery all day. I called his nurse, and he came into the office after hours when surgeries were done to review it and called me that night. When my Oncotype results came in, I was several weeks away from my next Oncologist visit, she called me with the results and talked to me about her recommendation for chemo over the phone as well as answered questions.

Just remember that getting the results, without being able to have that dialogue with your doctor may cause more worries.

Tracy

First Dx at 27 years old in 1999, 2nd Dx 2018, 3rd Dx 2019... Current Oncotype: 26 Dx 12/7/1999, IDC, Left, 1cm, Stage IB, Grade 2, 0/15 nodes, ER+/PR+ Surgery 12/22/1999 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Radiation Therapy 1/31/2000 Whole-breast: Breast, Lymph nodes Hormonal Therapy 2/1/2000 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 8/24/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/5/2018 Lumpectomy: Left Dx 9/7/2018, DCIS, Left, <1cm, Stage 0, Grade 1 Dx 5/31/2019, IDC, Left, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery 8/5/2019 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 9/4/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/2/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Hormonal Therapy 3/24/2020 Femara (letrozole), Zoladex (goserelin) Surgery 7/16/2020 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Feb 18, 2020 01:43PM sbelizabeth wrote:

Beesie nailed it. It's going to be hard for the office staff to refuse to give you YOUR results when you're standing right there.

If the doctor wants to control the narrative, no problem...let him/her control it as soon as the results are available. Making the patient wait until it's convenient for the physician is cruel and thoughtless.

In my experience, though, when it's bad news it's delivered pretty quickly. It seems to be OK to wait to deliver good news. Not a hard and fast rule, just an observation.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC/IBC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Feb 18, 2020 01:46PM - edited Feb 18, 2020 01:49PM by ziggzmom

Thank you, all of you, for your comments. I agree that there is information a doctor wants to provide to you directly to make sure you have the correct information and background; however, I also agree/feel that it should be done in a timely manner.

Dx 12/11/2019, IDC, Left, 2cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 1/13/2020 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary
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Feb 19, 2020 08:33AM claireinaz wrote:

Ditto Beesie's response. It is exactly what I would do. You paid for (or your insurance did) those onco. results, and they are yours, and about your condition. I've made this point so many times over the past years I've been a member here, but our doctors and medical personnel work for US, not the other way around. In fact, we've hired them to care for us, just as we would hire a contractor to build a house to our specifications. We choose, we pay, and they can recommend why a particular choice in that home design won't work or can't work, but ultimately we are in charge.

Good luck; I hope your doc isn't assuming you wouldn't know how to interpret results of your own test, which feels a bit paternalistic--but I'm probably over-thinking it :)

C

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Feb 19, 2020 11:00PM sbelizabeth wrote:

What she said! Although I've never had an issue getting results, I know many have, and it's infuriating.

I did have a hospital registration department demand that I drive 40 miles round trip to sign some paperwork a week before surgery that could just as easily be signed the morning of the procedure. I said NO. My document-signing hand will work just fine the morning of surgery, thank you, and I don't need to unnecessarily inconvenience myself and take time off work to accommodate the registration department.

A bit off-topic but I'm on a roll.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC/IBC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Feb 19, 2020 11:10PM Peregrinelady wrote:

My oncologist called me with the results and I really appreciated it. I still remember exactly where I was standing in my house and how elated I felt to a get a low score. I did not even know that not having chemo was an option, since I had seen my sister go through many chemos after being diagnosed in 2004.
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 5/18/2015 Mastectomy: Left Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/19/2016 Mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 8/1/2016 Arimidex (anastrozole) Hormonal Therapy 7/20/2020 Femara (letrozole)
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Feb 20, 2020 01:11PM ziggzmom wrote:

Appointment was today and I explained my frustrations to her and we had a good talk about the need to communicate this information. And what happened. All in all it was a good talk. AND GOOD NEWS...no chemo. Getting radiation set up!

Dx 12/11/2019, IDC, Left, 2cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 1/13/2020 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary
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Feb 20, 2020 10:21PM 2019whatayear wrote:

glad you got good news !

IDC 2 cm micromets 1 node 8 more removed. BMX 6/24, A/C then Taxol 7/25, 25 rads 1/6/2020 No reconstruction BRCA2 - BSO 2/19 all clear/ starting AI on 3/1/2020
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Feb 21, 2020 08:49AM claireinaz wrote:

That's awesome! Compared to 5 months of chemo, rads were so easy.

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Feb 21, 2020 05:44PM nonomimi5 wrote:

Ziggzmom - great news!

During my last visit with my Oncologist, I wanted to discuss about my Oncotype report and she did not have a copy on file - just the number. I felt that was very strange. I have a copy and plan to make a copy and give it to her. But I am feeling maybe she is not a good doctor. Please advise

DX at 53. Surgery at 54. Oncotype 17 Dx 3/23/2018, DCIS/IDC/IDC: Tubular, Right, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 4/30/2018 Lumpectomy; Lymph node removal Radiation Therapy 5/29/2018 Breast Hormonal Therapy 7/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 24, 2020 08:28AM ziggzmom wrote:

Nonomimi5 - That seems strange to me, too. My oncologist gave me a copy of a full report and went through each section. I would ask her directly for a copy.

Thank you, all, for your kind words and well wishes on the good news! First radiation meeting is tomorrow afternoon (2/25)!

Dx 12/11/2019, IDC, Left, 2cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 1/13/2020 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary
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Feb 24, 2020 08:49AM claireinaz wrote:

Nonomimi5, I'm a firm believer in intuition. Maybe she has an online copy but didn't make a paper copy to share with you, which could be clumsy, but not a deal-breaker-yet.

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Feb 24, 2020 08:56AM ziggzmom wrote:

claireinaz ~ I kind of wish we had a "like" button :) I agree completely with your response.

Dx 12/11/2019, IDC, Left, 2cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 1/13/2020 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary
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Feb 25, 2020 10:54PM nonomimi5 wrote:

Claire and ziggzmom, thank you for your advice. Ziggzmom - I hope your radiation meeting went well. Rads are manageable. Good luc

DX at 53. Surgery at 54. Oncotype 17 Dx 3/23/2018, DCIS/IDC/IDC: Tubular, Right, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 4/30/2018 Lumpectomy; Lymph node removal Radiation Therapy 5/29/2018 Breast Hormonal Therapy 7/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 2, 2020 12:19PM - edited Mar 2, 2020 12:27PM by scoop

ziggzmom, congrats!


I had my BMX Feb 11 and have been waiting on oncotype since then. After a phone call to Genomic Health, doc's office now says results anticipated 3/10. So basically a month long wait. Extremely frustrating. They are also hedging hard when I ask them to call me with results as soon as they have them. They prefer to set an appointment for the next day to tell me in person. When I pushed, the nurse said she'd need to ask the doctor. Grr.



Oh, and I also still have my drains in. I'm losing my mind.

Dx 1/2020, IDC, Right, 2cm, Grade 1, ER+/PR+, HER2- Surgery 2/11/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Mar 2, 2020 01:04PM - edited Mar 2, 2020 01:04PM by nonomimi5

Scoop - I am so sorry for the long wait. Hang in there. I don't remember how long I had to wait. I got all my scores and information about lab reports at my first follow upmeeting with my surgeon after the surgery.

DX at 53. Surgery at 54. Oncotype 17 Dx 3/23/2018, DCIS/IDC/IDC: Tubular, Right, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 4/30/2018 Lumpectomy; Lymph node removal Radiation Therapy 5/29/2018 Breast Hormonal Therapy 7/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 2, 2020 07:31PM ziggzmom wrote:

I'm so sorry you are experiencing this long wait and the push back in getting your results! I suggest talking to your dr. I felt so much better after I talked to mine and we had a good conversation about why I was upset. Be firm, but make sure you emphasize this your health and your information. Best of luck to you! Keep us posted!

Dx 12/11/2019, IDC, Left, 2cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 1/13/2020 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary
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Mar 3, 2020 12:56PM scoop wrote:

Thank you ziggzmom!


After all that complaining, yesterday I got my drains pulled (thank goodness), and then today the oncotype test randomly came in! And it was a 12! No chemo for me!


I am so relieved. Ready to start tamoxifen and recovery in earnest! Thank you to everyone here for the support and information.

Dx 1/2020, IDC, Right, 2cm, Grade 1, ER+/PR+, HER2- Surgery 2/11/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Mar 3, 2020 12:58PM nonomimi5 wrote:

That’s great news. Thank you for following up

DX at 53. Surgery at 54. Oncotype 17 Dx 3/23/2018, DCIS/IDC/IDC: Tubular, Right, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 4/30/2018 Lumpectomy; Lymph node removal Radiation Therapy 5/29/2018 Breast Hormonal Therapy 7/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 5, 2020 08:14AM ziggzmom wrote:

Scoop ~ that's the kind of information I love seeing right away in the morning! Great news!!!

Dx 12/11/2019, IDC, Left, 2cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 1/13/2020 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary

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