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Ways to estimate Oncotype? And other questions

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nns121317
nns121317 Member Posts: 110

I'm having trouble determining if my breast surgeon is just a delusional ray of sunshine, or if I truly don't have much to worry about.

In our initial meeting, the breast surgeon described cancer as a pet - some people have a pet goldfish, and some have a pet dragon. She told me I had a goldfish, even drew me a picture of one on my biopsy results. The surgeon talked about my tumor being the lowest grade, maybe 1cm (even though imaging and biopsy and palpation indicated otherwise) and there was no way it had spread to the nodes. She recommended lumpectomy and SNB, I opted for BMX w/immediate implant reconstruction due to a lengthy family history (genetic testing was negative though).

Surgery was on 10/8, and recovery is going well. I was in the office today to have my drains removed, and discussed the pathology report with the surgeon. My tumor was grade 2, 2.1cm, surrounded by grade 3 DCIS. It is ER+/PR-/HER2-. Of the two nodes pulled, one had a 4mm macrometastasis. The right breast had inflammation and microcalcifications but no cancer.

I consult with the MO and RO on 11/8, and I asked the surgeon if she had any feel for what further treatment would be required. She said maybe radiation, but didn't think chemo or any additional exploration of the nodes would be necessary. She said that since only one of two nodes had cancer, there was no reason to believe any other nodes would have cancer, and for all intents and purposes it's safe to assume I have no more cancer anywhere in my body. She does seem to really love hormone therapy, which it seems some folks tolerate better than others.

The surgeon is a nice person, and I don't really question her medical ability, but I also don't feel like I truly have a goldfish if there's lymph node involvement. I don't wish extra or unnecessary treatment upon anyone, including myself, but I see others with one node out of 15 or 20 positive getting chemo and ALND. My dad died due to a missed metastatic cancer diagnosis, and I'm scared this surgeon's blase' attitude would lead me down a similar path - but I don't know if my judgment is clouded based on my dad's experiences.

Recognizing that every case is different, is my pathology really that boring? Am I getting the treatment I need? And is there any way to guess what my Oncotype score would be? I'm only 42, and would definitely take chemo now to feel like I fought as hard as I could if it was offered.

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  • salamandra
    salamandra Member Posts: 736
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    It doesn't really matter what the SO thinks. It's the MO who will guide the care after surgery.

    It's not clear to me whether you're getting an actual oncotype or no. There are ways to guesstimate the oncotype, but afaik they require ki67, which I never even had, and there's not really much point in guesstimating when you're getting the real thing.

    Tumor over 2cm (though ever so barely), micromets, PR-, age 42, are all things that might hint towards a more aggressive cancer. You could still come back with a low oncotype.

    If you are not getting an oncotype or mammaprint, can you move the meeting with MO up sooner? Really, they're the ones who can give you any advice. Your surgeon is done once surgery is over.

    Sending good vibes!

  • sunshinegal
    sunshinegal Member Posts: 67
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    Agree with Salamanda. Talk to the medical oncologist.

    I find the the pet metaphor infantalizing, TBH. Does this surgeon tell patients with aggressive pathologies that they have a pet dragon?!



  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    I will echo Salamandra. I think that PR-, micromets, age 42, and 2 cm, while not the worst stats, are not the very best either. This is just the situation Oncotype was designed for! I would definitely get Oncotype done pronto so you can get the right treatment plan going. It will take a couple weeks to get the results. If the surgeon won't order it, ask the medical oncologist. I agree with Salamandra that the surgeon is out of her area of expertise, and that the medical oncologist is the one to talk to about this. Ideally there is a tumor board where the surgeon, medical oncologist, pathologist, radiation oncologist, etc. meet together to discuss your case and formulate a plan. If not, you will have to make sure they communicate.

    As far as additional lymph nodes, be aware that the more current thinking is that in many cases radiation can be done instead of ALND, lowering your risk of lymphedema. It depends on your specific situation.

  • Emily21
    Emily21 Member Posts: 67
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    Hi NNS, first of all, I'm sure you are in safe hands, my breast surgeon was exactly the same, very chill, no worries, this is an easy peasy tumour, no problem. It was 2cm, grade 2 er 100%,pr 10%, 3 nodes. I was lead to believe my oncotype would be low. It was 51,!!!!!!!! It still scares the bejaysus out of me. I'm not suggesting you will have a high score like mine, they are rare enough, but consider the possibility of needing chemo, it's doable. You will be fine.

  • jhl
    jhl Member Posts: 174
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    NNS,

    I agree with Sunshinegal the characterization of your cancer as a pet is insulting. Your surgeon is the one who should have sent your tissue for Oncotype testing. It is impossible to estimate what your score would be since the test is a compilation of results of 21 specific genes from YOUR OWN tumor tissue. Usually facilities will use a Ki67 or Oncotype, not both. You can look up the TailorRx study which is what the current treatment decisions are based upon. Did your pathology indicate a Stage? You gave us a Grade but it would be helpful if we knew the Stage as well. You should have the pathology report in your patient portal.

    So, the very first question I would have is - did my tumor tissue get sent for Oncotype testing?

    Good luck,

    Jane

  • nns121317
    nns121317 Member Posts: 110
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    Thanks all. I agree, the pet comparison set me off during our initial consult, and that first impression has stuck.

    The surgeon did send the tumor for Oncotype, so I'll have that information at some point. Patience is not a virtue of mine, that's for sure :( Pathology stage is IIB. Moving the oncology consults up is not likely, they wanted me pretty well healed first - but if I continue to progress, I might reach out and see what they have available once the Oncotype is back.


  • rah2464
    rah2464 Member Posts: 1,192
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    Yeah that pet analogy seems a little bit infantile. Glad you are getting the Oncotype done and are pushing to receive the care you feel is appropriate.

  • gb2115
    gb2115 Member Posts: 553
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    I thought >2 mm is a macromet, not a micromet? I think OP had it correct in her post.

    It's hard when you're set up to expect something by one of your doctors and then you are blindsided after pathology. That happened to me both times. Both times it was portrayed by surgery as cancer's equivalent of puppies and rainbows, but oops nope, it's in your nodes. The second time the during surgery pathology was clear, but they sent it out and oops, it's macromet with extra capsular extension and here's your chemo, after a week of believing I was in the clear. I wish the surgeon wouldn't try to guess at information they really can't know.

    Sorry you are going through this.

  • beesie.is.out-of-office
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    My first diagnosis was in 2005. That was before the Oncotype test came out so chemo decisions were based on pathology and stage.

    A patient with a 2.1cm tumor with nodal involvement would have unquestionably been recommended to have chemo. It wouldn't even have been borderline.

    Fortunately now we have the Oncotype test so chemo decisions can be made based on the genetics of the cancer, rather than just the pathology. It's possible that your Oncotype score could be in the lower intermediate range (with PR-, the score is unlikely to be low) but I think with your age and this pathology, you should probably assume that chemo is real possibility.

    As others have said, this falls in the domain of the MO. The surgeon should have said nothing.


  • nns121317
    nns121317 Member Posts: 110
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    Rah - thank you for the well wishes.

    Gb - it sounds like we were fed the same lines. It's sooo frustrating. In hindsight, I wish I would've met the MO before surgery so I had a clearer understanding of which doctor was the expert on various aspects of cancer care.

    Beesie - thank you for that insight. I've had a gut feeling since my diagnosis that chemo might be necessary. Hopefully the Oncotype comes back soon so I have time to prepare, if it indicates I'll benefit from chemo.

  • salamandra
    salamandra Member Posts: 736
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    For what it's worth, I think it's the default to not meet the MO until after surgery unless there's clear indication for chemo before surgery. I agree that it's kind of silly to have the SO be the sole first point of information, but that seems to be the established flow.

  • mle42
    mle42 Member Posts: 124
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    Hi NNS, I would have been super annoyed at the pet metaphor as well. Comparing a serious disease to a goldfish is kind of insulting. Some doctors seem to err on the side of making sure their patients are worried as little as possible, and not overwhelmed with data or technical language, which drives me crazy. Please treat me like an intelligent adult, not a child.

    With respect to your question about whether additional lymph nodes should come out - in case you're like me and want to see the actual data that treatment recommendations are based on - the current guidelines are based on the ASOSOG Z0011 study (results published in 2017 and linked here). This study demonstrated that for women with T1 or T2 primary breast cancer and less than 3 positive sentinel lymph nodes, there was NO benefit in terms of overall survival or regional recurrence to adding ALND after SNB. So it sounds like your surgeon is giving you appropriate recommendations regarding not doing an ALND. However..... now that I look at it again, I don't believe that study included people with DCIS, so since you have both IDC and DCIS, these results might not be 100% applicable. As others have said, the MO is the one who will give you recommendations on chemo so don't worry about the surgeon's recommendations there, but if you aren't totally comfortable with the surgical recommendation on your lymph nodes, it never hurts to get a second opinion! Whatever your decision on treatment, it could help ease some anxiety. I actually talked to three separate surgical oncologists and three medical oncologists before starting treatment. Nobody was offended, it's very common for people to seek multiple opinions.

  • nns121317
    nns121317 Member Posts: 110
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    mle,

    The more I think about, the more I'm leaning towards getting a second opinion. I have not heard awesome things about the MO I've been assigned, and while I'm willing to meet with them for a consult, I don't know how comfortable I'm going to be trusting them with my care. Maybe I'll set something up with a different MO as soon as I know my Oncotype score, I imagine that would be helpful.

    I was shocked that a node was positive, and I would definitely not be excited about ALND. Is a PET scan an alternative to determine if any cancer remains?


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    No, a PET scan (or any other scan) cannot pick up lurking microscopic disease.

    I'd like to add that the Z0011 criteria include T1 or T2 (size), 1 or 2 positive sentinel nodes, breast conserving surgery plus whole breast radiation, and no pre-operative chemo. This is in the current NCCN Guidelines. The guidelines tend to be conservative, and research continues, so I think there are other situations where doctors would also feel comfortable skipping ALND. For example, radiation to the axilla instead of ALND after mastectomy in some cases.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,749
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    NNS,

    Although I believe that a PET would be able to see hot lymph nodes*. I have never heard of a PET being done just for that. PET scans expose you to much larger amounts of radiation than a chest x-ray. Chest x-ray =.01 mSv, PET= 25 mSV. That is a huge difference and I would never choose to expose myself unless necessary (I have had more PETs than I remember but I am stage IV). They are also about $5,000. a pop and may not be covered by insurance. I had consented to an ALND should a sentinel node be positive prior to surgery. I did have a positive node and the ALND. I haven't had major issues but there's a lot of individual variation.

    As for second opinions, I highly recommend them! I felt comfortable with my oncologist's treatment plan but having a second opinion that concurred with the first made me feel very calm and confident.

    *i just read Shetland’s post and agree that microscopic involvement would be unseen. PET scans are very good but cannot visual malignancies until they have reached a certain size.

  • nns121317
    nns121317 Member Posts: 110
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    Thank you, that's good information.

    I think my whole issue with the ALND is that my surgeon told me from the get go that she didn't expect to find cancer in any nodes. Even in pre-op, she told me she only expected to take maybe one node. Then when pathology came back and one of two was positive, the surgeon said that there was no reason to assume any other nodes would come back positive - but couldn't give me a specific reason why she believed that would be the case. So I feel like she shut it down without ever exploring that additional node involvement could be a possibility, and it seemed a little self-serving.

    I do think they expect to do radiation, which makes me nervous now that I have implants.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    When I read about the node issue, whether they are clinically positive -- whether they showed obvious cancer on exam or a scan -- seems to be part of the discussion. So maybe that was part of your surgeon's thinking.

    I think you deserve a more in-depth discussion, to have your questions taken seriously, to be able to give truly informed consent. So if your surgeon cannot or will not do this, a second opinion or a meeting with your medical oncologist is in order.

  • alicebastable
    alicebastable Member Posts: 1,939
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    My BS and MO were both shocked that I had a micromet in the sentinel node. Even though I had re-excision surgery the next month, I did not have more nodes taken. But I think it may be why the RO was so adamant about starting radiation in as timely a manner as possible (I had an unrelated surgery between the re-excision and radiation), and why the initial plan of 22 sessions turned into 33. Even with a mammogram, ultrasound, biopsy, and MRI, that micromet did not show up. It's not a failure on the part of any doctor to not be able to know ahead of time. Mine was supposed to be a simple, relatively small, uncomplicated tumor. It still was; it just had a tiny unexpected stow-away.

  • sabbymama
    sabbymama Member Posts: 82
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    In my experience (pT3N2a), I had a 2cm tumor IDC and 5cm of DCIS with a positive lymph node and lymphovascular invasion indicated by mammo, US, MRI, and biopsy prior to surgery, so my BS planned the ALND from the start. 23 nodes taken, 4 were positive, 3 with macromets, and one quite large at 14mm. There was evidence of extranodal extension as well.CT scans prior to surgery showed several enlarged supraclavicular lymph nodes as well, but they were less than a cm, so not biopsied. My Oncotype score was only 12 and I had no genetic markers, but my MO was concerned about the node involvement and ordered 4 rounds of Taxotere and Cytoxan and considered adding two more, but changed her mind later. I also had 15 rounds of accelerated radiation to the chest, underarm, and collarbone area. The RO said based on my age, the node involvement, and the ENE, rads were recommended. If it were 3 nodes or less with no extranodal extension, he would have been less inclined to order an aggressive radiotherapy approach, but he felt it was important to "throw everything at it"....lol. In hindsight, though chemo and rads were rough, I do indeed feel that I have done everything possible to attack cancer and that helps me sleep a little better at night, although the AIs make that a bit challenging. I would encourage you to seek another opinion if you have any doubts because you have to live with these decisions and trust me, whether they are right or wrong, you will indeed question them forever, so get as many opinions as you can to help lessen that stress now. Wishing you the best of luck on your journey!

  • nns121317
    nns121317 Member Posts: 110
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    Many thanks to all who chimed in. I received my Oncotype score of 25 today. Since I'm only 42, I anticipate chemo is in my future. I meet the MO on Monday.

  • salamandra
    salamandra Member Posts: 736
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    Good luck NNS!

    I love your plan about seeking out other options beyond the MO that you haven't heard great things about, though of course I hope they surprise you in a positive way. The MO is a long term relationship and it makes a huge difference if it's someone in whom you have confidence.

    Regarding the lymph nodes: it was explained to me that surgeons can't know for sure how many they are taking because of how they're squished together. They take whatever's 'in front' - the sentinel - and sometimes that'll be one node and sometimes it could four, and they don't know until it goes to pathology. I am also under the impression now that radiation to the lymph nodes is considered a safer alternative to ALND (much much lower risk of lymphedema) although the negative is that you never do find out for sure how much cancer might have been there. Hopefully the MO (the one you're seeing or a second opinion) will be able to guide you in a way that makes sense to you whether they are also confident that your other lymph nodes or clear or if they recommend radiation or possibly ALND.


  • nns121317
    nns121317 Member Posts: 110
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    I do know the RO recommended radiation, and the tumor board agreed. And after giving that some thought, I think I'm comfortable with radiation being the solution to my node involvement, especially if I'm also doing chemo. LE could really mess with some aspects of my lifestyle and interests, so that would be a bummer.

    Now that I have my Oncotype, I intend to set up a second opinion, so hopefully I can meet both MOs in real time and make a decision quickly, since I'm almost a month post-surgery. Strange, but knowing my Oncotype shows a clear benefit to chemo gives me some peace. I finally know where I'm headed, even if the details are pending.

  • watersong
    watersong Member Posts: 6
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    I want to encourage you to continue what you're doing - asking questions! When I was diagnosed my surgeon said it was 'the good type of cancer' and I didn't know enough about cancer to even ask questions, and became a passenger on the cancer train, with all the pre-planned stops. It was important for me to pull the emergency break and understand my choices. Fortunately my OS was wonderful. I'm grateful.