Waiting for Oncotype result

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Yummy77
Yummy77 Member Posts: 17
edited May 2018 in Waiting for Test Results

i am so worried about the result of my Oncotype. Waiting is torture! I have no treatment plan yet coz my MO said we shoud wait for the Oncotype result before scheduling any treatment. I met my MO and RO already. I am so worried about the delay of any treatment coz i had my lumpectomy last january and re excision last march and clear margin.

Anybody experienced the same thing i mean delay of any treatment? Thanks

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2018

    Hi Yummy and welcome to Breastcancer.org!

    We're so sorry you find yourself here, but we're really glad you found us -- you're sure to find our Community an incredible source of information, advice, and support. We're sure others will be by shortly to weigh in with their experiences with delay of treatment, but we wanted to send you a warm welcome in the meantime.

    Please let us know if you need anything at all!

    --The Mods

  • MAC58
    MAC58 Member Posts: 60
    edited May 2018

    Hi Yummy, I am waiting for my oncotype to come back too, they said it usually takes 3 weeks. It's not delaying treatment currently cause my 2nd lumpectomy incision opened 10 days after surgery so until it heals there isn't anything I could be doing.

    This is nerve wracking cause the oncotype score will most likely determine whether I will need chemo as well as radiation. Met with MO, but appt with RO isn't till May 22. But I'm with you, I want to get going and get this done!

    Can I ask why your surgery was so long ago?

    Maryan

  • Brennalynn
    Brennalynn Member Posts: 9
    edited May 2018

    I too am waiting for Oncotype results and I agree the waiting is torturing. I have been trying to stay busy and educating myself as much as I can. One thing I’ve learned is there are many factors that need to be considered when putting a treatment plan together. Thus far my providers have been understanding and informative. I can’t say I have no anxiety but having treatment team that understands the depth of the emotional component surrounding cancer diagnosis has helped me cope

  • Yummy77
    Yummy77 Member Posts: 17
    edited May 2018

    Hi Maryan! 🙏 to you!

    I was diagnosed january 9 of IDC and DCIS beside each other... had lumpectomy January 30 clear margin for IDC but some DCIS at the margin so i had reexcision march 13 and waited for pathology results for a month and finally clear margin of DCIS. Met my MO and RO already and i gonna have a month of Rads but have to wait for oncotype result as per my MO before planning prevention treatment. I let my MO know my concern about the delay of rads but he said there is no problem.

    May i asked what is your ER and PR mine is 95% on both. They said that a higher PR could get a low oncotype.

    Thanks and hoping that we will get a low oncotype

  • Yummy77
    Yummy77 Member Posts: 17
    edited May 2018

    hi Brennalyn! Yes waiting cause me a lot of anxiety. I told my MO and RO that i am really scared and worried but they said i should be happy coz it’s not in my lympnodes .

    I told them that i trust them both and they know what is the best.

    Thanks 🙏 for your response and all the best for u

  • MAC58
    MAC58 Member Posts: 60
    edited May 2018

    Hi yummy,

    My estrogen and progesterone are both scored 300, on a 1-300 scale, so highly receptive! I really hope that's true about high PR and low oncotype 🙏, getting my incision checked at doctor tomorrow, my visiting nurse said it's already healed a half inch, so one inch to go.

    Maryann

  • Yummy77
    Yummy77 Member Posts: 17
    edited May 2018

    Hi Maryann! Yes 🙏 for low oncotype for us.

    Glad to know you are healing well and sending you good vibes for your check up tomorrow.


  • Yummy77
    Yummy77 Member Posts: 17
    edited May 2018

    just an update to my post! I had an appointment with my oncologist yesterday for my oncotype result and I got a score of 7 🙏 God!!! And my recurrence risk on tamoxifen for 5 years is 6% .

    Now waiting for my rads sked.

    Mac58 and Maryann did you have your results yet? Hope you got low oncotype too

  • MAC58
    MAC58 Member Posts: 60
    edited May 2018

    Supergreat news yummy!! Nope, my appointment back with oncologist isnt until May 25. He said it may take 3 weeks to hear back, how long did yours take?


    Brennalynn did you hear anything yet?

  • Yummy77
    Yummy77 Member Posts: 17
    edited May 2018

    Hi Maryann! Hope you’re doin fine.

    Yes indeed! I think it took 3 weeks too but thedate i saw in the oncotype report is they received the sample 23 april and they finished thetest 27 and i think they faxed the result to my oncologist. I asked for a copy.

    I will be on Tamox for two years and cant remember the other med .

    You will have a low score too for sure base on your stat ...I’ll be 🙏 for you!!!

    Yumm

  • Yummy77
    Yummy77 Member Posts: 17
    edited May 2018

    Hi Maryann! Hope you’re doin fine.

    Yes indeed! I think it took 3 weeks too but thedate i saw in the oncotype report is they received the sample 23 april and they finished thetest 27 and i think they faxed the result to my oncologist. I asked for a copy.

    I will be on Tamox for two years and cant remember the other med .

    You will have a low score too for sure base on your stat ...I’ll be 🙏 for you!!!

    Yumm

  • LibbyLouWho18
    LibbyLouWho18 Member Posts: 44
    edited May 2018

    Yummy,

    So glad you heard great news!!!!

    I am waiting for test results too, and I went back to the Onco today to go over what to prepare for now that I've had time to research possible treatments. Two weeks wait so far. Ugh.

    Dx 3/7/2018, IDC, Left, Lumpectomy 4/16, 3.2cm, Stage 2A, 0/2 nodes, ER+/PR+, HER2-

  • Yummy77
    Yummy77 Member Posts: 17
    edited May 2018

    Hi Libbylou! Yes great news after a long wait 🙏 God! All possible treatments were on hold for me till we received the result.

    All the best for you !


  • MAC58
    MAC58 Member Posts: 60
    edited May 2018

    still waiting for oncotype...appt with oncology is Friday. Today I had a Ct scan of my torso, anyone else get this done? Tomorrow is first appointment with RAd oncologist. Still working on healing my open incision, depth has gone from 1.5 inches to .351 inch. Almost there! It's always going to have a divot in the side of the breast cause the upper part of the hole will never totally meet . Honestly people this is 2018, I can't believe that some of this stuff still seems like the dark ages of medicine...maybe if it were mostlymen affected?

  • Meow13
    Meow13 Member Posts: 4,859
    edited May 2018

    AMEN, you can say that again it is truly barbaric the treatment we receive.

  • Yummy77
    Yummy77 Member Posts: 17
    edited May 2018

    Hi Maryann! May I asked why they require you to have CT scan on your torso?

    I had bone scan before my lumpectomy and upper abdomen ultrasound.

    I have an appointment for my radiotherapy consultation on Wednesday thank God.

    Sending you positive vibes for your appointment

  • CindyNY
    CindyNY Member Posts: 1,022
    edited May 2018

    I had a CT scan of my chest as they calculated angles and dosages for rads. They need to see where all your organs are, none swollen or in the way. Could it be for that, more chest than torso?

  • Yummy77
    Yummy77 Member Posts: 17
    edited May 2018

    Hi CindyNY! I think they did that during your CT simulation am i right? Did they put dye during simulation

  • LibbyLouWho18
    LibbyLouWho18 Member Posts: 44
    edited May 2018

    week #3 still waiting for results. Geeze. I'm trying to keep my mind busy with good thoughts. Hope you all are having a good week.

  • CindyNY
    CindyNY Member Posts: 1,022
    edited May 2018

    Yummy77- no dye used. Yes, it was for the simulation for rads.

    My Oncotype test was held up by insurance; then my MO was on vacation. I was able to contact Genomic Health at 1-866-ONCOTYPE and they sent me release forms to fill out and fax back, so they were able to FAX (yup, in 2018 fax) me my results.

    Good luck ladies!

  • LibbyLouWho18
    LibbyLouWho18 Member Posts: 44
    edited May 2018

    Thanks Cindy for the number. At this point, I will take a fax report! Haha!!

    ***update: I called Onco Type today to see what it has been over 3 weeks now, and the lady I spoke with was so nice. They followed up with my insurance company today, and they have all of the paperwork, it is now "pending approval".

    Thanks again for the suggestion to call. I may request that fax on Friday if there hasn't been a call from my MO.

  • Yummy77
    Yummy77 Member Posts: 17
    edited May 2018

    Hi LibbylouWho! Waiting is torture but try to think positive.

    Cindy - thanks for the response... and the info cause i have an appointment tomorrow with RO and i am worried about the simulation... how did it go with you? Is the CT same as th diagnostic CT scans? Than

  • MAC58
    MAC58 Member Posts: 60
    edited May 2018

    Ct scan was for oncologist..said he wanted to see lymph nodes...today absolutely sucked!! Went to see RO for first time they checked to see if oncotype was back, nope not yet, well can't plan anything until incision is healed, then another Ct scan then about 10 days while all the measurements are set up, them 33 radiation appointments. Ok so we really need the oncotype, cause as I e told everyone we have a family vacation set for August 4, paid for cruise for 6 people that can't be changed. So, go over to med oncologist office to see if they can't call for oncotype...oops, sorry, we messed up and the tissue was never sent...WTF??? I though I was gonna have a freaking heart attack... can't believe it. I've been waiting for results for almost 3 weeks for nothing!!

    Supposedly they are sending it, but I think all the timing is off now..I just don't know what to do. I called my BS and he was pretty mad, I think o will probably change med oncologist because I just can't trust this guys office, so will have to travel an hour or more to see another. I do t know what's going to happen now, but I'm so distraught.

  • CindyNY
    CindyNY Member Posts: 1,022
    edited May 2018

    Yummy77- simulation went well. It's where I got my two "dot" tattoos. My arms were overhead/behind my head holding pegs, its the exact position you'll be placed in for rads, so speak up if you're in any pain. I think it was stressful, just all of the unknown, but they make you feel comfortable and don't keep you there any longer than necessary. You can do it!

  • LibbyLouWho18
    LibbyLouWho18 Member Posts: 44
    edited May 2018

    oh Mac58, how frustrating for you! I would have to think about getting another doctor also. It's hard to make any plans for the next few months when you don't have those results back. Hopefully, all will be ok, and you can still enjoy your cruise.

  • Yummy77
    Yummy77 Member Posts: 17
    edited May 2018

    Hi CindyNY , thank you for the response ! I went today for my RO consultation and they explained what i gonna expect during the radiotherapy i will be positioned same as you and they want me to practice it before the simulation. I will get 15 sessions whole breast and 5 sessions boost.

    The nurse told me to wait within 3 weeks they gonna call up for the simulation sked but surprise surprise they just called up that i have an appointment on May 31 🙏 .

    I tried the position it’s harder than I thought 😡.


    Mac58-i am sorry to hear about your tissue sample not being sent . It’s a chance you’re still healing with the surgery . Hoping that everything will be fine with you before your vacay


  • MAC58
    MAC58 Member Posts: 60
    edited May 2018

    well, I have decided to not wait for the oncotype to come back, unless it's back by first ofJune but to go ahead with radiation. I still have .3 inches to go to heal the incision but really hoping it's done in the next 7 days. My appt with the BS is on June 1 and hopefully he will say it's done. I need 33 rads and have to be done by August 1. We have had a completely paid for trip for our whole family to go on a cruise and we leave August 4, nothing like adding more stress!

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