Topic: Ways to estimate Oncotype? And other questions

Forum: IDC (Invasive Ductal Carcinoma) — Just diagnosed, in treatment, or finished treatment for IDC.

Posted on: Oct 19, 2021 10:30AM

Posted on: Oct 19, 2021 10:30AM

nns121317 wrote:

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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Oct 21, 2021 12:43PM salamandra wrote:

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.

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/18/2018 Lumpectomy; Lymph node removal Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/3/2018 Whole breast: Breast Hormonal Therapy 12/19/2019 Fareston (toremifene)
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Oct 21, 2021 01:50PM mle42 wrote:

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.

Dx 5/17/2021, IDC, Right, 3cm, Stage IIIA, Grade 3, ER+/PR+, HER2- Surgery 10/25/2021 Lumpectomy (Right); Lymph node removal (Right): Sentinel Radiation Therapy 11/30/2021 Whole breast, Radiation boost: Right breast, Lymph nodes Hormonal Therapy 1/1/2022 Arimidex (anastrozole) Targeted Therapy 2/17/2022 Verzenio Chemotherapy AC + T (Taxol)
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Oct 21, 2021 02:37PM nns121317 wrote:


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?

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Oct 21, 2021 03:02PM - edited Oct 21, 2021 05:17PM by ShetlandPony

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.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD 1 1/2yrs. GI/perit mets Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole breast: Breast Surgery Lumpectomy
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Oct 21, 2021 03:06PM - edited Oct 21, 2021 03:11PM by exbrnxgrl


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.

Dx IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, ER+/PR+, HER2- Dx DCIS/IDC, Left, 4cm, Grade 1, 1/15 nodes, ER+/PR+, HER2-
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Oct 21, 2021 03:39PM nns121317 wrote:

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.

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Oct 21, 2021 05:21PM ShetlandPony wrote:

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.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD 1 1/2yrs. GI/perit mets Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole breast: Breast Surgery Lumpectomy
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Oct 21, 2021 05:58PM alicebastable wrote:

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.

Ignore treatment info (below) which is a BCO glitch. Do not enter personal information on this site since they grossly mishandled a data breach.
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Oct 21, 2021 09:50PM sabbymama wrote:

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" 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!

Dx 3/2/2020, DCIS/IDC, Left, 6cm+, Stage IIIA, Grade 2, 4/22 nodes, ER+/PR+, HER2- Surgery 4/10/2020 Lymph node removal; Lymph node removal (Left): Sentinel, Underarm/Axillary; Mastectomy; Reconstruction (Left): Tissue Expander Chemotherapy 5/25/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/14/2020 Whole breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 10/12/2020 Arimidex (anastrozole) Surgery 6/10/2021 Prophylactic mastectomy; Prophylactic mastectomy (Right)
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Nov 3, 2021 10:50AM nns121317 wrote:

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.

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