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.

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Nov 2, 2021 06:58PM salamandra wrote:

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.

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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Nov 2, 2021 07:50PM nns121317 wrote:

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.

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Dec 4, 2021 07:18PM Watersong wrote:

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.

Dx 11/2019, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2-

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