Oncotype testing and just generally speaking

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JaniceRH
JaniceRH Member Posts: 44
edited June 2014 in IDC (Invasive Ductal Carcinoma)

Hi, my name is Janice, and I started this last May with a cluster of microcalcifications.  On biopsy this turned out to be DCIS, Grade 3; I followed this with a WEB in June; surprisingly, the results were 3.2cm with more is a distant site, drade 3, with margins that were not clear.  Next step was mastectomy on July 29th; residual DCIS and IDC 7mm grade 2.

I had a tissue expander put in at the time of surgery and am still having a lot of discomfort from that; I'm + 3 weeks out and still draining to beat the band.  We meet with the medical oncologist on Tuesday and my surgeon (oh she is wonderful!) is recommending hormonal therapy - aromatase inhibitor of some sort and she also talked about oncotype testing.

I've gone back and forth in my mind on this issue and here is my thought: my first surgeon didn't think the biospy was going to show anything and it did.  She expected the WEB to show DCIS of 1cm or less and instead it was very large.  Switching surgeons (for various reasons), my new surgeon didn't think that doing sentinel node mapping was needed; fortunately, a node showed up during the mastectomy, which tested negative.  Expecting widespread DCIS, which there was, there was also the IDC.  My point here is that I've gone against the conventional wisdom every step along this journey, so maybe oncotype testing is a good idea?  I'd like your thoughts.

The last few days, I finding myself to be feeling tired, run down and more emotional than normal.  I started back to work last week, perhaps this too is just part of the healing process?

Sorry for the long post....

Janice

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  • lemont
    lemont Member Posts: 31
    edited August 2009

    I say get the Oncotype test done. It just gives you more info that will help you make treatment decisions and give you more peace of mind about whatever decisions you make. I too had a lot of surprises. If I heard "no that won't happen" one more time it would have been the surgeon needing surgery! I ended up with 2 lumpectomies, SNB and AND, bilat mast, and a bilat mast revision. I was only stage 1 but had Oncotype of 40!



    The fatigue seems to hit just about everybody, but at different times. It didn't hit me until after I finished chemo. I think the emotional part comes along with it - when you're tired you just can't cope. My docs said the only thing that would help was exercise, something I had managed to avoid my entire life. Well, they were right. I joined a gym and got a personal trainer and it definitely helped.



    Sometimes the fatigue brings along its good buddy insomnia. I took a prescription drug for a few months to help with that.



    I wish you the best, Janice.

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  • lemont
    lemont Member Posts: 31
    edited August 2009

    P.S. I had IDC and DCIS too. The DCIS wasn't found until the 2nd lumpectomy.

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  • swimangel72
    swimangel72 Member Posts: 1,989
    edited August 2009

    I agree - definitely go for the Oncotype DX - it will give you more peace-of-mind moving forward. My score was 22 - considered a "low-intermediate" last year - my onc was telling me I wouldn't need chemo just Arimidex until my FISH report came back showing the tumor was highly Her2+++ which changed everything. Chemo and Herceptin weren't that difficult for me. My point is that each step along the way, I was thrown a curve ball - so I think you are wise to go the extra-mile and getting the Oncotype testing done. Good luck - I hope you get a VERY low score!

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  • OG56
    OG56 Member Posts: 897
    edited August 2009

    A year ago they were not oncotyping everyone but the BS at Memorial Sloan Kettering in NY stated that everyone should be tested. Definitely get tested!  I am second guessing all the time now because they didn't test me a year ago, wish they had.

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  • JaniceRH
    JaniceRH Member Posts: 44
    edited August 2009

    Thanks everyone for your responses.  I had my first appointment yesterday with the oncologist with mixed results.  He seems to be thorough, kind, thoughtful, very knowledgable, on the front line; all good things, but he didn't feel he had enough information to complete his decision making.

    I did not have sentinel node mapping, as it was, my surgeon found a node while doing the mastectomy which came back negative.  He is not comfortable with this and is going back to her for discussions; he would like to see ancillary node disection, but we'll see.

    For some reason, he only received the path reports from the mastectomy, not from the WEB nor the core biopsy; I'm faxing those to him as well as copy of the blood work.  My family history makes my case very complicated too, so our feeling was that he needed a lot more data before making his final decisions on treatment.

    The online adjuvant tool that they use for predicting relapse gave me a score of 18 and it clearly showed that aromatase inhibitors would give me far better results than chemo, BUT (don't you hate that word sometimes!!) but, that was predicated on sentinel node mapping which I didn't have.

    So, the long and the short of this is, he is going to talk to my surgeon and see what her thinking was; I'm faxing him the other reports today (because I have them and it's easier and faster)  He wants to study the genetics involved (even though I am BRCA negative), and he is probably going to go with oncotype testing anyway.  He told us that he has seen it before where it comes back with a differing opinion than the online tool, and in my case, it's a smart way to go.

    Next appointment isn't for 6 weeks..why?, I don't know, but there you have it!  Kind of incomplete, isn't it!!!

    Janice

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  • swimangel72
    swimangel72 Member Posts: 1,989
    edited August 2009
    Sounds like a good onc with a thorough approach Janice. Did you ask him why you  need to wait 6 weeks for your next appointment - that seems a bit long. Or will it take that long for him to get the answers from your breast surgeon? I'd push the onc on that timing for your own peace-of-mind. If he does decide to go ahead with Oncotype DX - that test takes weeks to get results - I think about 3 weeks, but I might be wrong. So the sooner you can push your onc to get the info he needs and to see you, the better for you. Good luck - and remember - "the squeaky wheel gets the grease". Wink
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  • Rachel_BC
    Rachel_BC Member Posts: 1,386
    edited August 2009

    what is WEB please?

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  • dee1961
    dee1961 Member Posts: 1,672
    edited August 2009

    Just an FYI...sometimes you may not be able to get the Oncotype test because you do not have enough tissue to test, or your Oncologist does not rely on them. And it is only helpful to determine if you will need chemo or not, so it's not helpful for DCIS or LCIS ladies.

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  • JaniceRH
    JaniceRH Member Posts: 44
    edited August 2009

    Hi Rachel, sorry; WEB is Wide excision Biopsy...I didn't have a lump, so they can't call it a lumpectomy, but I guess it's the same thing.

    Hi Dee, I've been told that they hold back enough tissue specifically for the testing, so I hope they're right!

     Hi Swim, the appointment is 6 weeks, but he also said that he was going to call me soon to talk about the testing and anything else I think.  He may be giving himself time to get the answers he needs from the surgeon, the onco results back (if he goes ahead with it) and he also ordered a bone density and chest x-ray...so maybe that's it??? (I shudder to think of yet another surgery and more drains, I still have the drain in from the mastectomy 4 weeks ago...still haven't dropped to the level they want!). 

    I really appreciate everyone's response, you are helping me keep my head on straight!

    Janice

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  • nas14
    nas14 Member Posts: 68
    edited August 2009

    Janice,

    In June I had a lumpectomy with the surprise results of breast cancer, & the surgeon wanted to do a sentinel node biopsy because the margins were not clear. I had that done a couple of weeks later & was glad the lymph nodes were negative. I was scheduled for radiation the end of July; however, the day before I was to go for the mapping they wanted me to see a medical oncologist. He decided to do the Oncotype DX first to give a better idea on the proper treatment. I was upset about having to postpone the radiation, but the radiation oncologist promised me that I would be put right back on the schedule as soon as we heard the results. Because someone dropped the ball somewhere, I didn't get the results for 4 weeks. It took me calling both Genomic Health & the director of nursing at our cancer center here in order to finally get the results. That was the only time I've had any stress since my diagnosis. They got me right in the next day after receiving the test results to see the medical oncologist. I was quite surprised with my score of 28, which is in the higher intermediate range. Because of the size of my tumor, etc., the medical oncologist said he felt comfortable recommending 6 weeks of radiation followed by 5 years of an aromatase inhibitor. The radiation oncologist called me that night at home & said she was getting me on the schedule in a couple of days. I went in for the mapping a week ago Fri. & started treatments this past Wed. I'm excited to finally be started on my way to the end. All I've felt from the beginning was that I'm so very lucky that this was caught so early with a great prognosis. Even though it was stressful waiting for the results, I'm glad now that I did the Oncotype DX.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    I would have the Oncotype done.  Insist on it.  Good luck.

    Melissa

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  • JaniceRH
    JaniceRH Member Posts: 44
    edited August 2009

    Hi everyone.  My oncologist called me Friday evening  and talked about the axillary node dissection, but really his discussion centered around him offering the oncotype.  In my mind and because of you too (thank you!), I said that I much preferred to start with the oncotype first.  It seems reasonable and non-invasive!!  At this point (4+ weeks out) I still have my drain in and I'm still draining around 100 cc's in a 24 hour period, so the idea of another surgery right now is not something I want to do.

    He said that I'll be contacted, probably Tuesday, to set up a recall appointment with him and my surgeon as well.  My thinking on this is to meet with him first to get the score and hear what he has to say and then talk to my surgeon...if it's even necessary.

    I appreciate all of you taking the time to read my story and to help guide me through this.  Nancy, good luck with your treatment, let me know how things are going for you too!

    Janice

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  • nas14
    nas14 Member Posts: 68
    edited September 2009

    Janice, Good luck with the Oncotype DX. I just finished my 5th radiation treatment this morning. So far, everything's going great. A couple of hours after my first treatment, I got a nagging headache that wouldn't go away; just enough to be annoying. I said something about it yesterday to the tech, & she said it couldn't be from the radiation as they weren't doing that part of my body. Well, apparently it was just my body reacting in a strange way to this being done. Anyway, last night the headache seemed to ease off almost to the point of being nonexistent. I saw the rad. onc. after my treatment this morning (she sees us at least once a week during treatment). She said I will have 25 treatments to the full breast, followed by 10 boosts. 5 down; only 25 left to go!!!

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