Waiting for Oncotype Phone Call from Oncologist, Help!

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HotPinkMess
HotPinkMess Member Posts: 70
edited June 2014 in IDC (Invasive Ductal Carcinoma)

Hoping I don't fall into the "Gray Area."  What questions should I ask her? 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2013

    The number, and her recommendation. You might also ask her to explain again (I'm guessing she already did once) EXACTLY what the number means when it comes to single or combined therapies and long-term prognosis.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited June 2013

    I had the test done too. When my BS's office called she started the conversation with I have some good news...and then I relaxed. I was a nervous wreck waiting for the results. My treatment plan depended on the results of the test - chemo or Rads. My score was 11; determined to be a non aggressive cancer and the tumor not as large as first thought. So, I agree with Steph...the number and her recommendation. Hopefully your score wont be in the intermediate stage because then it becomes more difficult to decide what to do. Your ONC will def advise you but the ultimate decision is yours. Good luck. Let us know. Diane

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2013

    I got the call on my answering machine that the score was in.  My oncologist wanted to let me know right away (it was less than a week before Christmas).  I couldn't call the office back quick enough!  He wasn't available at the time and it felt like forever waiting for him to call back again.  My score ended up 14, and since I was highly ER+ ~ he felt strongly that tamoxifen was my best bet and chemo would do more harm than good.  In MY case. 

    Best of luck to you no matter what your score is. :)

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  • HotPinkMess
    HotPinkMess Member Posts: 70
    edited June 2013

    No kidding, SusansGarden I have not let my phone out of my hand all day!!!  Just talked to her, it's an 11! YAY!   She said the same thing about chemo and I probably won't need RADS either.   I feel like I just won the lottery, despite having cancer.   We will decide after my mastectomy whether she'll prescribe Tamoxifen.  She is estimating a 7 percent chance of recurrence.  She also said my HER2 very solidly negative, not borderline.  :)

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  • Cuetang
    Cuetang Member Posts: 575
    edited June 2013

    Yay HotPinkMess on receiving a low Oncotype score!  By the way, I think the Oncotype score includes the assumption that you will be taking Tamoxifen...

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  • edwards750
    edwards750 Member Posts: 3,761
    edited June 2013

    Thank goodness HotPink...prayers have been answered. You have the exact same score as me. I had a lumpectomy followed by 33 RADS treatments and am on tamoxifen. And Cuetang is correct the chance of recurrence includes taking tamoxifen for 5 years. Diane

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2013

    Congrats!!  That's exactly how I remember feeling: like I had won the cancer lottery. ;)

    Regarding the Tamoxifen ~ I've been on it for over two years now and don't really have any noticeable symptoms and feel great.  I am also taking Effexor, which is supposed to diminish any hot flashes.

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  • jlbloom
    jlbloom Member Posts: 228
    edited June 2013

    Hello! This is my first post.  Please don't hesitate to tell me what I'm doing that I shouldn't.

    I'm also waiting on my oncotype number.  In the gray area for radiation and chemo, other than hormone therapy.  I don't like gray and I look terrible in it.  So nice to find others where I am.  I was supposed to have a DIEP when I had BMX on May 23rd.

    Number 11 sounds great, congratulations!

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  • HotPinkMess
    HotPinkMess Member Posts: 70
    edited June 2013

    JBloom, I hope it's good news.  I am still on the fence about whether to remove the other side.   As far as Tamoxifen goes, my Oncologist said there are some other alternatives to it.  Not sure what.  I'm 50 and either Pre or Peri Menopausal.  I hope you are recovering well!  

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  • jlbloom
    jlbloom Member Posts: 228
    edited June 2013

    HotPink, I just found out the requisition for the pathology lab didn't reach them, so the oncotype lab is still waiting on my slides.  Patience is a virtue.  I'm running out of virtue.  I hope the results are back for the June 18th appointment.  How long did it take to get your number?

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  • HotPinkMess
    HotPinkMess Member Posts: 70
    edited June 2013

    It took 2 1/2 weeks.  I had to  keep bugging my oncology office.   Hang in there!

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  • Kathie100
    Kathie100 Member Posts: 108
    edited June 2013

    Hot pink mess what made you decide on lumpectomy and then mastectomy later. I'm also waiting on my oncotype result. Also they did blood work to check for cancer markers in the blood. Has anyone on here with stage 1 BC ever had results come back from blood work showing cancer has mastisized.

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  • HotPinkMess
    HotPinkMess Member Posts: 70
    edited June 2013

    Hi Kathie!  After my lumpectomy the margins weren't great so I was going to have to go back in for re-excision.  That was postponed due to an infection where they took out the lymph  nodes.  In the meantime, I met with plastic surgeons about reconstruction and was told reconstructing radiated  breasts can be a problem.  Both  said if it were them ( they are women) they would do mastectomy with immediate reconstruction.  So, I switched gears.  I'm now actually thinking about going double for peace of mind and to make the reconstruction more symetrical.  And to be like Angelina Jolie :) (not)

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  • Kathie100
    Kathie100 Member Posts: 108
    edited June 2013

    Thank you for the information I've noticed a few ladies have done the same thing. I am also waiting on my test results but my Dr feels certain the number will come back low, however she still wanted to discuss the what ifs it's in the mid range. I feel certain I will opt for chemo after reading the section on here about recurrance. I DO NOT want to go thru this ever again. I'm very happy your results were good I hope I am as fortunate. It's looking good. :)

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  • lmac101
    lmac101 Member Posts: 6
    edited July 2013

    I hate  being in limbo!!  I should get my onco score by Wednesday - then have to make decision on treatment.  So much information on here - it is wonderful!  I am amazed as to how many are having mastectomy after lumpectomy and wondering if I should have gone that route. 

    Here's to the best to all of us!

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  • jlbloom
    jlbloom Member Posts: 228
    edited July 2013

    lmac101, I can't agree more.  The limbo land is the hardest part so far.  My results were actually back in seven days.  I called Genomic Health every day to ask when the results would be available.  My number was 20.  Again, it is the gray area.  My first MO didn't think chemo benefits outweighed the SEs.  I asked about a clinical trial and was referred to IU University hospital in Indianapolis. 

    I met with the MO yesterday.  She felt the benefits of chemo + hormone therapy provided more benefit than my first MO.  There is a clinical trial, S1007, that I fit really well.  One group will get chemo + hormone therapy, and the other wil get hormone therapy alone.  It is really to help determine with women with 1 - 3 positive nodes truly benefit from the chemo.  It is a randomized selection.  The MO said it is really just luck.  I'm putting the "randomization" into God's hands.  I believe He can put me into the group I need to be in.

    I know this is way more than you asked for!  Sorry for rambling.  I hope your number will be back as soon as possible and that it will be able to give you peace with whatever decision you make.

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited July 2013

    jibloom-good for you for paticipating in the clinical trial. The Rxponder trial started recruiting around the time I was diagnosed. Not many centers involved at that time. I was unable to participate.

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  • lmac101
    lmac101 Member Posts: 6
    edited July 2013

    Well I am happy to report that my score is a 10.  Meet with dr on Tuesday to discuss treatment and think my score is to low for trial.  Keep us updated.

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  • jlbloom
    jlbloom Member Posts: 228
    edited July 2013

    lmac, that is great.  If mine were a 10 I don't think I would consider it. 

    Since my last post, my PS office called and they had a cancellation for next Thursday.  I will be having DIEP flap reconstruction!  I checked to see if they still wanted me to come for the clinical trial.  The nurse said she thought the doctor would have good information for us, and you can opt out at any time.

    I'm not so sure I can deal with recovering from surgery and chemo at the same time.  I know I need to get started on the AIs before too long.  I may end up back with my original MO.  I really like him.  I would like for my statistics to be counted in the clinical trial even without chemo.

    I just need to leave it God's hands and quite taking back all the time!

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