Curious: Calling genomic health to get oncotyope results?

capippy
capippy Member Posts: 27
edited October 2015 in Diagnosed and Waiting for Test Results

While I feel myself age exponentially every day while waiting for results (lol) I've been searching to see how long it takes on average. I'm a little under the gun, as I am booked to start Radiation on Monday (Sept 28th) but that will be cancelled if the oncotype results come back high. That means, I am assuming, that if my MO doesn't get the results before this Friday, it will have to be postponed. :( We decided on the 11th to do the test, and she said it would be sent on Tuesday 15th, and in her experience the results are back by 6-7 business days, which would be Thursday 24th. eek - tight. (Her nurse, however, told me that it can and has taken up to three weeks!). How long is it taking lately?

I'm not sure what will happen if I don't hear anything before Monday. Do I still go for radiation and assume that the RO and MO are talking to each other? Do I call and cancel? I noticed in many other threads that people have called Genomic to get results. Would they actually give me results over the phone? How do they know it's me? lol. I really don't want my sessions to be delayed or cancelled as I have a trip booked for the day after I finish. (Is that a bad idea? I'm assuming I'll be tired and sore, but still able to travel?).

Well this turned into 20 questions... ;)


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  • fralaliso
    fralaliso Member Posts: 63
    edited September 2015

    Hi capippy,

    I had the oncotype test done in Jan this year after my BMX. The results did take a little over two weeks. I wasn't happy with my BS's office refusing to give me the results over the phone and telling me that the MO would review them with me at my appointment (meaning I would need to wait another week). So, I called Genomic and was able to get my results. They require you to fill out a form and fax that and a copy of your driver's license to them before they will release your results.

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited September 2015

    I'm not sure if they give you results on the phone. I got my results back in about 2 1/2 weeks, I think. I guess a phone call to Genomics can't hurt! Are they doing a BRCA test also? If you are in a multi-disciplinary clinic, the Dr's should be communicating, but I wouldn't assume that they are. Do you have a Nurse Coordinator available? You kind of have to take the bull by the horns sometimes!

    If you happen to fall into the intermediate onco-score range, there is another test that can be done also, called the Mamma-print. Of course, it takes time also. I did not get the Mamma-print done, bc I wanted to get the TX started asap. ....and, now it's been two yrs since my DX! I am feeling fine and I hope you do well with whatever course you decide to take! Best wishes:)

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  • capippy
    capippy Member Posts: 27
    edited September 2015

    Thanks fralaliso! Good to know that I could get them if I need to! I guess they tell your oncologist that you got them? I don't want to make her think I'm second guessing her..lol Just ridiculously anxious to have this over. Thanks for the info!

    Keepthefaith - I'm not doing any other tests at this point. My MO wouldn't even have done the oncotype; she was comfortable going straight to radiation, but for my peace of mind, she ordered it. She said it would have to be very high for her to recommend chemo, so I'm just anxious to find out. I think if I don't hear by Friday morning I'll call the MO's nurse and get advice. I'm glad you are feeling fine and wish you continued health! xo


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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2015

    Capippy - It's probably not a good idea to plan to travel the day after your radiation is supposed to end. There is always a possibility of delay due to equipment issues (usually software interface issues) and any missed treatments are added on to the end of your treatment plan. Over the course of my treatment we had 2 equipment issues. You'd probably be better off with a cushion of a few days at the end. That's definitely something to discuss when you do your simulation, if you haven't already.

    I had 35 treatments and, while I did pretty well with it, I don't think I would have felt like traveling at the end of the whole breast radiation due to sensitivity to friction as well as just being ground down by the whole process. By the end of my week + of boosts my skin was much less sensitive and irritable. Your results may (will) vary. ;)

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  • capippy
    capippy Member Posts: 27
    edited September 2015

    Thanks, Hopeful! Good to know - I never really thought about possible delays. The trip was booked before I knew I'd be dealing with all of this - it's for work so I'm okay to wait and see how it goes before deciding! If I finish in time and feel well I'll go, if not - no biggie. :) I think I'm going to have to accept I can't control any of this and just go with the flow. Something I'm quite unaccustomed to, lol.

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  • tgtg
    tgtg Member Posts: 266
    edited September 2015

    capippy--genetic tests take time to be performed, despite the dramatic and instantaneous genetic testing results that "save the day" for tv criminalists! I would be concerned if the results for 20+ tests came back to me in less than 2 weeks, based on my husband's knowledge of and experience in genetic testing. As for delays, it is wise to include them in your thinking. During 35 rads treatments,I experienced 2 delays--one before I started (the hospital decided to recertify and upgrade its computer system), and the second near the end, when the safety door to the linear accelerator room would not lock, requiring an expert to be flown in to correct the problem.

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  • ml143333
    ml143333 Member Posts: 658
    edited September 2015

    It usually takes about 2 - 2 1/2 weeks to get results.  Mine took 6 for some reason.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2015

    My results took 15 calendar days from surgery to meeting to review results with my surgeon.

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited September 2015

    Hi Capippy:

    I note tgtg's comment about "genetic testing" and possible concern about a rapid turnaround time. Actually, "Oncotype DX" is conducted by a very different methodology than "genetic testing" (e.g., BRCA1/2, etc.)

    "Genetic testing" of a sample containing normal cells (e.g., blood) requires extensive genomic DNA sequencing and may also include an assessment of certain gene rearrangements.

    In contrast, with Oncotype DX, the levels of gene expression (not the DNA sequence) from a number of genes in a tumor sample are determined. The method used is quantitative "RT-PCR" (reverse-transcriptase polymerase chain reaction). It assesses the level of expression from 16 cancer-related genes and five reference genes.

    http://breast-cancer.oncotypedx.com/en-US/Professi...

    I defer to the experience of others above regarding the typical turn-around times they have experienced for Oncotype DX.

    BarredOwl

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2015

    Thank you, BarredOwl. That's an important distinction.

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  • capippy
    capippy Member Posts: 27
    edited September 2015

    thank everyone!

    My MO just called with the results! Only seven business days for turn around - pretty damn good!

    It's 17! No Chemo! Starts rads as scheduled on Monday! :)

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  • Sophrosyne
    Sophrosyne Member Posts: 19
    edited September 2015

    I am SOOOOO frustrated right now. I had a lumpectomy August 24th. Oncologist decided OncotypeDX test needed because of Micrometastatic cancer found in 2 of 3 sentinel lymph nodes removed. Saw surgeon for follow up last Wed. I was told the results were not back yet. Today I sent a message to genomic (couldn't call because I only have a work phone). They replied back at 4:26pm that they had faxed results to Dr. on Sept. 21st! Call Oncologist at 4:45 to try to get results. They said office closed at 5 but all the people who could give results are gone for the day. Over the last two days the other "tit" (not the one with the lumpectomy) started to hurt....maybe all mental, maybe not....who knows, I also had BRCA1 and 2 tests a little over a week ago and was told that would take 4 weeks for results. I feel like I am on death's door.....I know that sounds melodramatic, but I am freaking out. My family just wants me to chill out and stop stressing over this because I am stressing them out......seriously. Have to find a way to pull myself together. My productivity at work is suffering.....hell, everything in my life is suffering. I have complete respect for folks fighting this battle. It's true you can never understand until you walk in someone else's shoes.

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  • Crescent5
    Crescent5 Member Posts: 442
    edited September 2015

    Sophrosyne I completely get your frustration (and really, it's beyond mere frustration when we're talking cancer). I think it's inexcusable for a dr's office to sit on results like that. Absolutely inexcusable. (btw I recently paged a dr to call me back at night with test results I knew were sitting in the offfice. TFB Run your office better during the day).

    When I was going through BC 3 years ago, we could not get results from Genomic. They could just tell you if they've been sent to the dr. At the time, I was working with my BS in my home city and a new to me Onc in Boston. Genomic told me they were faxing them on a Friday afternoon which, due to the time zones, was after hours on the East Coast.

    My BS's office called me at 9 am Saturday with the results. They have a nurse checking patients on weekends.

    Tufts University Medical Center waited AN ENTIRE WEEK to call me with the results. And I'm not kidding, the fellow who read me my results was giggling because apparently someone was fooling with her in the office. So damn unprofessional. I can't even think about her telling me it wouldn't matter if my cancer returned in 30 years because well ...

    So no, I don't think we think this is like a tv show and we want instant results. I think this is truly a matter of life and death, and it's not too much to ask to have someone read the results to us within 24 hours. And if your dr's office is that cold to let results hang like that, then maybe they're not the best choice.

    I ditched Tufts immediately and stuck with the locals where I have received excellent care and am in great health.

    Good luck!!

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  • Sophrosyne
    Sophrosyne Member Posts: 19
    edited September 2015

    Thank you Crescent5 for your reply. I really appreciate it! I am really just beside myself and although my family is concerned, they can't understand my stress or emotional reaction to having to wait. I am trying not to be a glass half empty person, but I feel like they WERE there when I called on Friday and want to wait until I am in the office to give me results. My appt. is Wednesday, but I intend to call again on Monday. I want to know the score so I can be prepared and do the research. It seems like every thought that goes through my head these days is "I just want to get this over with". I have not told most of my co-workers because wanted to know the "deal" first and I think that's just adding to the stress.

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited September 2015

    Hi Sophrosyne:

    I am sorry you are going through this. However, your appointment may be well-timed. If something informative happens to come out about the TailorRX trial today, you will have a chance to discuss it.

    https://community.breastcancer.org/forum/73/topic/...

    Wishing you a nice low score.

    BarredOwl

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  • Sophrosyne
    Sophrosyne Member Posts: 19
    edited September 2015

    Hi BarredOwl

    Thank you so much for your reply! The Doctor did eventually call back Monday, but annoyingly would only say my results were on the high side of the low risk category, so I don't know the actual score. He wants to have me in the office and explain what the results mean and plan treatment. I read through this study and it is reporting over just about the exact condition I am dealing with, so I am praying for that low score too. I did see the report about this study on TV yesterday, but I didn't realize the importance of it until I read through the information, so again.....thank you :-).

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited October 2015

    Hi Sophrosyne:

    A lot of the discussion is actually in a different thread now, which has been quite active:

    https://community.breastcancer.org/forum/5/topic/8...

    It is important to note that the study was performed in a subset of ER and/or PR positive, HER2-negative, node-negative patients with invasive disease:

    "The study included women 18 to 75 years of age with axillary node–negative invasive breast cancer that was estrogen-receptor–positive or progesterone-receptor–positive (or both) and that did not overexpress HER2. Patients had to meet National Comprehensive Cancer Network guidelines for the recommendation of adjuvant chemotherapy, including a primary tumor size of 1.1 to 5.0 cm in the greatest dimension for a tumor of any grade or a size of 0.6 to 1.0 cm in the greatest dimension for a tumor of intermediate or high histologic grade or nuclear grade (or both)."

    Here is the original report published on Monday:

    http://www.nejm.org/doi/full/10.1056/NEJMoa1510764...

    Here is a related commentary:

    http://www.nejm.org/doi/full/10.1056/NEJMe1512092

    Here is a summary in layman's terms:

    http://www.eurekalert.org/pub_releases/2015-09/ecr...

    The new study found that the Oncotype DX assay (for invasive cancer) was quite robust among node-negative patients who met the study criteria and had scores from 0 to 10, almost all of whom received endocrine therapy alone.

    (Edited above to add "almost": "Although the protocol specified that no chemotherapy be given if the recurrence score was 0 to 10, a total of 6 patients received adjuvant chemotherapy . . .")

    In the thread I linked to above, you'll see some consternation arising from the different cut-offs used in this new study to allocate patients to various treatment groups, versus the cut-offs currently in use.

    The authors explained their rationale for these particular study cut-off points in paragraphs 2 and 3 of the "Study Protocol" section of the paper. Those observations may be worthy of discussion with your oncologist, depending on your actual score.

    New Study:

    "Low risk": RS ≤ 10 (assigned to receive endocrine therapy alone)

    "Intermediate risk": RS = 11 to 25 (randomly assigned to receive either chemotherapy plus endocrine therapy or endocrine therapy alone)

    "High risk": RS ≥ 26 (assigned to receive chemotherapy plus endocrine therapy)

    Previously Defined:

    "Low risk": RS <18

    "Intermediate risk": RS = 18 to 30

    "High risk": RS ≥ 31

    Basically, the way I understand it, the results in this particular paper are informative for patients who would meet the new study criteria, who have a RS ≤ 10 (0 to 10), and who receive endocrine therapy. I do not think the new results in this paper would change the situation for others, who will probably continue to be advised along the lines they have been advised to date, using the framework of the previously defined cut-offs (absent other results).

    As always, I am just a layperson and could be wrong, so you should discuss everything with your oncologist!

    Good luck!

    BarredOwl



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  • SueH58
    SueH58 Member Posts: 632
    edited October 2015

    Sophrosyne - how did your appointment go? Did the Dr. recommend chemo? My score was a 20 - shoot, of course it fell in intermediate, which really means there isn't enough data to discern what should be done. So then I had the Mammaprint test done, which only assigns a low or high risk. Mine came back high. While still trying to get out of chemo, I asked my Dr. what he would have prescribed before the genomic testing. He said "I would prescribe chemotherapy since your tumor is bigger than 1 cm." So damn--I couldn't fight him any more and proceded to have CMF chemo, which causes hair thinning but not hair loss and is easier to tolerate. 2 months post final chemo, it's a bit of a distant memory already. I do know that I'm glad to do it, though, as you only have one shot at it.

    Hope you are happy with your upcoming treatment plans.


    Sue

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