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Has anyone had this happen!!! Oncotype DX test

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Hotrodmommy
Hotrodmommy Member Posts: 8

Hi ladies this is my first post. Reading all your stories has given me strength and knowledge, and I know that I'm not alone in this BC journey. I'm 47 married with 3 young children. Found a lump in my left breast on Oct 4th, I knew it was cancer, just my gut feeling. Diagnosed with IDC on Nov 4, 2014 had a lumpectomy on Nov 25th got final path report on Dec 4th, seems like the 4th is my lucky day! I do have a sense of humor through all of this! 1cm Onc says still stage 1 but report says stage 2a grade 1 ER+PR+HER2- ITC in 1 of 4 nodes, LVI extensive, free margins, but there were a few that were only by 0.1mm to close for me, but BC surgeon says rads will take care of that, and one margin states LVI present adjacent to margin, that doesn't sound good to me. Onc sent out for Oncotype DX on Dec 4th, well that's what I thought. I've been waiting for the results, since the Onc hadn't called I called yesterday, I had to do my own research to find out that the the test was never requested. When I informed the nurse that information she said that when she sent the request it must have not gone through, and thanked me for letting her know. "WHAT" are you kidding me!! This was kinda of important to me since I'm in a grey area already due to ITC in nodes and LVI on wether or not to do chemo. Has this happened to any of you ladies??? This makes me very nervous about having to wait so long to start chemo if I need it. I've heard that you should start chemo 4 to 8 weeks after surgery. Onc doesn't want to do any Pet, bone scans, wanted me to start taking tamoxifen right away then stop if I do chemo (CMF or T/C) has anyone done that? I guess I'm looking for anyone with similar DX as mine, or had to wait this long to start treatment. I have and will remain very positive about all of this even though I'm scared. Thanks

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  • specialk
    specialk Member Posts: 9,237
    edited December 2014
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    I did not have an Oncotype Dx as I was Her2+, so ineligible, and knew I would have chemo and Herceptin regardless, but wanted you to know that many of us have to wait to start chemo.  I had surgical complications that delayed chemo significantly, and while 4 weeks is optimal, often is it not possible.  I would demand that your physician have your Oncotype fast-tracked since they seem to have fouled up the first one - and I would be insistent about it.  As in, your physician is calling Genomic and telling them to do it NOW.  I believe it usually takes about three weeks for results, maybe a bit less if some pressure is applied.  Once you get a result they can start chemo quickly if you need it, so that would still keep you in the 8 week-ish window.  Hold on to the fact that your cancer has been removed, and as far as scans, keep in mind that PET can only see things that are large enough, so often it is not done for early stagers.  Starting hormonal therapy may actually be more important than chemo, so I think it is actually a great idea - and one that is becoming more prevalent.  Good luck!

  • momof2doxies
    momof2doxies Member Posts: 58
    edited December 2014
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    It happened to me in 2012 with my first tumor. The test was ordered but the hospital had to be contacted 3 times by Genomic Health that the sample had not been received. This of course happened during the holiday period and delayed my treatment by several weeks. Oh, well, I got my chemo treatment the next year with another tumor in the other breast which ended up being TNBC. You better believe I was on the phone to GH to verify they received the second BC tumor sample.

    Hope the road becomes less bumpy…Best wishes.


  • Manu14
    Manu14 Member Posts: 36
    edited December 2014
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    The Oncotype DX test is generally said to take up to 2 weeks to get results. Mine came back to my surgeon's office in 11 days; so I was very happy about that. I can see why you are anxious to get the test results especially since your path reports indicated LVI. I ended up not having chemo but I did start taking tamoxifen even before surgery because I was concerned about waiting - even though my surgeon wasn't. I certainly wouldn't see a down side to you taking a hormonal now. It is something you would be doing at some point anyway. I hope your oncologist's office will speak directly with the Genommic company to push results through as quickly as possible.

  • daisylover
    daisylover Member Posts: 173
    edited December 2014
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    Hi Hotrodmommy,

    I also needed to "remind" my oncologist about the OncotypeDX test - even though he recommended it originally. It's important to have the results, though. I think that everyone worries about delays in treatment but your cancer has been there for years, probably. Like mine, it is a non-aggressive (grade 1) tumor. I was diagnosed on 10/22/2013, waited until 12/08 for original partial lumpectomy, then waited until 12/28 for re-excision, and then had BMX on 2/28/2014. I waited 10 days for the pathology report from that final surgery and started Tamoxifen on 3/14/2014 (almost 5 months later). Your oncologist would not delay if it was going to impact your health. I can relate to your need to have the cancer out and dealt with! I sometimes feel like having a low grade at a fairly early stage makes my cancer less interesting to my oncologist. However, I am hoping that when/if I progress to stage 4, my oncologist will be as dedicated to caring for me as she is to her other stage 4 patients! When you have your OncotypeDX score and can make a treatment plan, you will feel less scared, more in control. Just try to focus on your children and living life each day to its fullest. Sounds trite but so true - each day is a gift. Best wishes

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited December 2014
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    I wouldn't hesitate to start tamoxifen now. I would also really get on the MO's office about fast-tracking your Oncotype testing. Talk about oblivious!

    Good luck with your results and the rest of your treatments.

  • Hotrodmommy
    Hotrodmommy Member Posts: 8
    edited December 2014
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    It helps so much to hear your stories, I hope your all doing well. I'am waiting for my Onc to call me back so I can talk to him personally, not sure if he's even aware yet of this goof up. The nurse did say she put stat on it, but I do agree my doc should call and see if there's any way to get it back sooner. I haven't started the tamoxifen yet, I wasn't sure what kind of side effects I would have, and didn't want to start chemo feeling sick, I want to be as healthy as I can since I've already lost some weight, which isn't good for me since I'm already naturally thin. So maybe it would be beneficial for me to start taking it now that I have to wait this long. I trust my Onc and know that we all want things to move faster then they do. Well at least during this 3 week wait I got to enjoy the Holidays with my family and feel a little bit normal again, before I jump back into the fight. My Onc and I were already leaning toward doing CMF no matter what the oncotype said due to the fact of ITC in node and LVI, but wanted to see what my score would be, maybe chemo wouldn't work for me. But like I've heard many women say I don't want to have any regrets, and know I did everything I could to be there for my kids, and husband. I knew I was a fighter but never thought I'd have to be a Warrior! Any input on doing CMF over T/C????

  • specialk
    specialk Member Posts: 9,237
    edited December 2014
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    CMF is supposed to be a more easily tolerated chemo than TC - although each person responds differently, it is an old and time tested regimen, but still being used because it works.  It is seeing a resurgence in use also because of its effectiveness on TN (Triple Negative) breast cancer.  It is the regimen that Amy Robach of Good Morning America used, and there is a specific thread on BCO for the ladies who have used it, linked below.  They would be the best sources of info.

    https://community.breastcancer.org/forum/6/topic/243424?page=255#post_4258765

  • lyzzysmom
    lyzzysmom Member Posts: 285
    edited December 2014
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    My Oncotype test took less than 2 weeks and the people who do it were very helpful. They also told me that my onc had an on-line account with them so he would have on-line access to the result as soon as it was available so hopefully yours will too.

  • JustAJennifer
    JustAJennifer Member Posts: 18
    edited January 2015
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    Hi, it looks like we are on a similar timeline. My diagnosis was 11/6, had lumpectomies 12/3 and 12/15, butstill without clear margins for DCIS. I did have the Oncotype DX done. It was sent out 12/19 and results came back 12/30- much faster than I expected. I received a score of 14, so chemo won't be of benefit to me. However, my MRI showed potentially a lot more DCIS. My next step is MRI guided biopsy, followed by more surgery.

    I'm glad to have found this community, it's been so helpful to me.

  • bevin
    bevin Member Posts: 519
    edited January 2015
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    Good Morning,  I'm sorry you're dealing with this and similarly had a delay with Onco Type. Once they got the sample , we had results in 11 days.

     

    The only additional comment I would add for your consideration is that the margin is small and its odd the surgeon doesn't want to get wider margins. Often with lumpectomy (25% of cases according to my hospital) require additional surgery to get wider margins. I'd only suggest to perhaps ask the doctor to explain the risk of not getting wider margins even in light of the rads and chemo. Good luck with everything and I hope your chemo is light on you and tough on the cancer.!

  • mdg
    mdg Member Posts: 1,468
    edited January 2015
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    I also had LVI but clear nodes. My on other came back pretty quick but still left me in a gray area so I opted for chemo and was offered TCx4 by two oncologists. I used cold caps to keep my hair and I was done in 9 weeks. It was not fun but not as bad as I thought it would be.

  • ml143333
    ml143333 Member Posts: 190
    edited January 2015
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    I didn't have a problem getting the test results back, but it did take about two weeks.

    I wanted to let you know also that not everyone starts treatments right away for many different reasons.  Four weeks is optimal, but not always possible.  I started chemo 8 weeks after my BMX and just finished my fourth treatment yesterday.

    Based on my intermediate Oncotype score of 23, my MO and I decided that we would go for chemo just in case there were any CTC out there.  We hopefuloly can zap them away!  He offered my 4 treatments of taxotore or 8 treatments of CMF.  After talking with him and doing research, we decided for CMF.  It is more tolerable to the system (but is still chemo, trust me).  Since I am working, we thought CMF would be best.

  • doxie
    doxie Member Posts: 700
    edited January 2015
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    Research now shows that as long as there is "no ink on tumor" and the patient is given whole breast radiation there doesn't need to be a re-excision. Here's the link with a summary.

    http://jco.ascopubs.org/content/early/2014/02/10/J...

    Conclusion: The use of no ink on tumor as the standard for an adequate margin in invasive cancer in the era of multidisciplinary therapy is associated with low rates of IBTR (ipsilateral breast tumor recurrence) and has the potential to decrease re-excision rates, improve cosmetic outcomes, and decrease health care costs.

    I had a re-excision and now wonder if that was necessary. It involved removing my nipple. My biopsy which removed all the tumor was by incision due to its location.

    I too had a delay in getting my Onco score which was 30. It took 5 weeks. Took 3 weeks to figure out that the tissue had not made it out of the hospital. When it came back I was send right to get a port, then the next day chemo. It was almost 90 days from initial surgery to chemo. I don't understand why we don't see our MOs at the same time as the BS. The protocol is outdated when an Oncotype is obvious. Or the BS orders the Oncotype. Some do.

  • Hotrodmommy
    Hotrodmommy Member Posts: 8
    edited January 2015
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    I'm so sorry to hear of your diagnosis, and all that your going through right now. I will pray for you. I guess we're on this journey together. The waiting is the hardest part, but for me I have used this time to do all the research I can on my dx, treatments, diets, alterative therapies, that helps me deal with my fears and anxiety. I now have kept tract of the progress of my oncotype test, it looks like I'll have to wait at least 10 more days "bummer" I pray for a low score! But I also know having LVI and ITC scares me. I don't see to many women on this site who have LVI, and theres is also not a lot of information out there about it. My MO didn't seem as concerned about it as I am. I would really like to hear how your doing with CMF. My MO offered me the same options as you if I need chemo, but leans toward CMF. Also said no to me using cold caps, he had his reasons. 

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited January 2015
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    Hotrod mommy - Tamoxifen may have side effects but it is NOT likely to make you feel sick.

    Secondly, I would REALLY push your MO on the cold cap issue if keeping your hair is of any concern to you at all. Lot of MOs are basically fuddy-duddies regarding anything "new" (cold caps have been used in Asia & Europe for at least 15 years but not as long here). And God forbid we allow women some remaining shred of normalcy.

    You may think very highly of your medical team at this point, which is great, but we all have to remember that no one cares as much about our well being as we ourselves do. doctors are human, too, and not always in the best sense of the word. IF something matters to you, or puzzles you, keep pushing on it. YOU are paying them.
  • meow13
    meow13 Member Posts: 1,363
    edited January 2015
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    hotrod mommy you are ER and PR positive the tamoxifen may very well be more effective than chemo I would try it.

  • lojo21
    lojo21 Member Posts: 39
    edited January 2015
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    Hi! I did have a somewhat similar issue. Mastectomy near Thanksgiving 2013, pathology back mid December, and then my sample got caught up in the holiday craziness and didn't go out when my oncologist thought it did. Then there was an insurance problem...all told, I waited until February before the oncotype test came back. I was freaking out because of the delay. My doc prescribed tamoxifen while waiting and said I could just stop if I needed chemo. (I also should have taken the Xanax as prescribed too!). The anxiety was the worst. The score came back low, so no chemo, but my margins were close so I needed rads, despite the MX. The tamoxifen gave me very mild hot flashes at first (maybe 2 weeks) - my feet/ legs would feel warm, and my period was a little wonky. I was on tamox a month, stopped for rads and then started again a few weeks after finishing rads. I've had really no side effects that I can tell other than a lengthening of my menstrual cycle (to about 30 days from 25 previously, but that could be age, too). Try not to worry. Taking the tamoxifen eased my mind a lot. Get an anti anxiety med too. Best!

  • twolumps
    twolumps Member Posts: 37
    edited January 2015
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    Tick tock tick tock.  I had my BMX on Dec. 2nd, had to wait until Dec. 31st to see the MO who then finally ordered the oncotype.  Sample was not received until last week (hospital didn't send it!), but according to Genomic Health the results are in and will be available for my MO appointment tomorrow.  Had felt really positive every step of the way up until this last wait for the oncotype.  I think the wait coupled with the studies I read (no correlation to ANYTHING! Age, size of tumor, grade, ki67 score: no correlation to oncotype score) are wearing me down.

    I haven't started ANY treatment yet, other than the BMX and I'm ready to get this show on the road so I can get back to "normal".

  • Hotrodmommy
    Hotrodmommy Member Posts: 8
    edited January 2015
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    twolumps... I totally understand how you feel. I'm glad your appointment is tomorrow, and you can can finally move forward with what ever your treatments you will need. I asked for the results to be told to me over the phone and I got it the day before my appointment, my score was 12 I don't have to do chemo. All of this SUCKS the waiting, the tests, the knowing, the not knowing. I'm sending positive thoughts your way that you'll get a good score.

  • BeWell
    BeWell Member Posts: 1
    edited January 2015
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    I had a very similar start to my cancer six months ago, but I did have oncotype testing. I sent the result (score of 19) and slides to a pathologist/breast cancer expert that I knew for a second opinion. She said that she does not think highly of oncotype testing, and that with my pathology (same as yours and Grade 1 Stage 2 cancer), I should manage well with radiation, tamoxifen, and rigorous follow-up. So that is what I did. Hopefully that will work for you too. If I had known of her opinion on oncatype testing, I probably would have skipped it all together. I am sure you'll find the right treatment for you, but it sounds like you might need to follow up more regularly with your dr's office going forward. They definitely dropped the ball.