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 18, 2021 05:30PM

Posted on: Oct 18, 2021 05:30PM

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.

Surgery 10/1/2021 Lymph node removal (Left): Sentinel; Mastectomy (Left): Skin Sparing; Mastectomy (Right): Skin Sparing; Reconstruction (Left): Silicone implant, Silicone textured implant; Reconstruction (Right): Silicone implant, Silicone textured implant Chemotherapy 11/19/2021 AC + T (Taxol) Radiation Therapy 5/9/2022 Whole breast: Chest wall, Lymph nodes, Left breast Surgery 6/1/2022 Hormonal Therapy 6/1/2022 Arimidex (anastrozole)
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Oct 18, 2021 06:09PM salamandra wrote:

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!

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 18, 2021 06:17PM sunshinegal wrote:

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?!



Dx 10/7/2010, DCIS, Right, 6cm+, Stage 0, Grade 2, 0/4 nodes, ER+/PR+ Dx 3/22/2021, IDC, Right, <1cm, Grade 3, ER+/PR+, HER2-
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Oct 18, 2021 06:22PM - edited Oct 18, 2021 06:28PM by ShetlandPony

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.

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 18, 2021 06:26PM Emily21 wrote:

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.

Dx 9/4/2020, IDC, Right, 2cm, Stage IIB, Grade 2, 3/31 nodes, ER+/PR+, HER2-, Surgery 9/23/2020 Lumpectomy Hormonal Therapy Arimidex (anastrozole) Radiation Therapy 3DCRT: Breast, Lymph nodes, Chest wall Chemotherapy AC + T (Taxol)
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Oct 18, 2021 07:02PM jhl wrote:

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

Dx 11/15/2019, IDC: Cribriform, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Oct 18, 2021 07:32PM nns121317 wrote:

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.


Surgery 10/1/2021 Lymph node removal (Left): Sentinel; Mastectomy (Left): Skin Sparing; Mastectomy (Right): Skin Sparing; Reconstruction (Left): Silicone implant, Silicone textured implant; Reconstruction (Right): Silicone implant, Silicone textured implant Chemotherapy 11/19/2021 AC + T (Taxol) Radiation Therapy 5/9/2022 Whole breast: Chest wall, Lymph nodes, Left breast Surgery 6/1/2022 Hormonal Therapy 6/1/2022 Arimidex (anastrozole)
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Oct 19, 2021 06:06AM rah2464 wrote:

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.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 6/27/2018 Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant Hormonal Therapy 7/27/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 19, 2021 06:35AM - edited Oct 19, 2021 06:40AM by gb2115

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.

First Dx IDC in 10/16 at age 38, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Lumpectomy + radiation + tamoxifen. Second Dx IDC recurrence in original location 5/21. 1.3 cm ER/PR+, Her2 -. Grade 2. 2/2 nodes. UMX + AC/T + Zoladex/Exemestane + Zometa.
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Oct 19, 2021 09:07AM beesie.is.out-of-office wrote:

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.


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Oct 20, 2021 01:48PM nns121317 wrote:

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.

Surgery 10/1/2021 Lymph node removal (Left): Sentinel; Mastectomy (Left): Skin Sparing; Mastectomy (Right): Skin Sparing; Reconstruction (Left): Silicone implant, Silicone textured implant; Reconstruction (Right): Silicone implant, Silicone textured implant Chemotherapy 11/19/2021 AC + T (Taxol) Radiation Therapy 5/9/2022 Whole breast: Chest wall, Lymph nodes, Left breast Surgery 6/1/2022 Hormonal Therapy 6/1/2022 Arimidex (anastrozole)

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