Lymph nodes with micro metastasis

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bonniecleveland
bonniecleveland Member Posts: 2 Member
edited November 2023 in Breast Cancer #1

Hi there, I’m new to the group and am excited to chat with others in the same boat I am in. I’ve been diagnosed with ER/PR positive, HER2 negative invasive lobular breast ca with micro metastasis to 2/3 lymph nodes which is freaking me out. I’ve had a bilateral mastectomy. My provider says radiation or chemotherapy is not necessary. I’m taking Anastrozole. I can’t get past the fact that my lymph nodes have micro metastasis. I’m struggling with the worry that this will cause further metastasis. Can I hear from others who have this diagnosis as well? Did you have radiation or chemo? I’ve read some articles that micro metastasis should be treated with chemo.

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  • RocDocVic
    RocDocVic Member Posts: 81 Member
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    I would highly recommend a second opinion, preferably with a medical Oncologist and Radiologist. I would question your Oncologist on this and have them show you studies that show it won't spread. What are the risk/outcome percentages?

  • LifeInBloom100
    LifeInBloom100 Member Posts: 51 Member
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    Bonnie, I agree with @RocDocVic - do get a second opinion. I was recently diagnosed with ER/PR+ / HER2- IDC with ONE positive node, and I too will be on both anastrozole and lupron (I am premenopausal) but radiation has strongly been recommended (I'm weighing whether to do radiation or my own personal health implications - do NOT let that influence you). Has your surgeon told you what your tumor grade is (the rate at which it progresses), or ordered an Oncotype test for you (to determine the benefit of chemotherapy for your particular tumor and its biomarkers, as well as your risk of distant recurrence)? That information, along with the Ki-67 (protein) tumor marker knowledge is weighed by your oncology team. Get those baselines - learn the risks/outcomes, agreed.

    Please feel free to update us as you learn more. You're already doing diligence to care for yourself by asking these questions. Best of luck; you'll be in my thoughts.

  • Sergai
    Sergai Member Posts: 8 Member
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    Bonnie, everyone is different, but I was diagnosed with ER/PR+/HER- also. I had one of 3 positive nodes. This was 2 years ago. I had a mastectomy but no radiation or chemo. I met with the radiation Dr after ultrasounds under my arm and she said I didn't need radiation. I had the oncotype test on my tumor with a score of 14, so chemo wasn't required. Yes, I am concerned about cancer returning, but let if fade away after each 6 month visit. I feel comfortable with the radiation/chemo decision since I am being treated a Dartmouth and they have a team of oncologists review each case at the start. That felt like a built-in second opinion. I am on Tamoxifen with minor side effects so far.

  • LifeInBloom100
    LifeInBloom100 Member Posts: 51 Member
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    Hello - do you mind my asking your age? I don't know whether that has any impact on radiation recommendation or not. I had exactly your diagnosis - ER/PR+ / HER-2-Neg, IDC, with 1 of 4 nodes positive. Oncotype scores of 2 tumors in left breast: 19 and 21 - also no chemo providing significant benefit, so I am on Lupron to suppress my ovaries and will be on Anastrozole as soon as I decide whether or not to go through with radiation to my left breast, which has twice now been recommended. I had a double mastectomy, though cancer only in the left breast. I had clear margins after surgery but 4mm of cancer cells in the sentinel lymph node.

    I'm trying to see if there is ANY way I can have peace of mind without doing radiation, but two veteran radiation oncologists are strongly recommending it.

  • LifeInBloom100
    LifeInBloom100 Member Posts: 51 Member
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    @Sergai -- above -- I'd forgotten to tag you. Thank you.

  • bonniecleveland
    bonniecleveland Member Posts: 2 Member
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    Thanks to all who responded, I so appreciate it. My cancer is Ki-67 less than 10%, HER2 equivocal by IHC negative by FISH. STAGE: IB T1cNmi(sn) 1/3 lymph node positive for micro metastasis. Oncotype showed a 15% chance of reoccurrence. My diagnosis was over a year ago and I’m still feeling uneasy, I think a second opinion might help. But I have another question for all… I have a significant family history of breast can and pancreatic cancer on my mother’s side. Her BRCA was negative. The geneticist I met with offered no other genetic testing. Has anyone had any genetic testing other than BRCA?

  • Jasmine8
    Jasmine8 Member Posts: 17 Member
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    I would highly suggest you do radiation. My aunt had stage 1, lumpectomy, zero lymph nodes and she was recommended radiation. I was stage 2 had bilateral mastectomy and 6 of 12 nodes were positive, I also did radiation but said no to chemo due to low oncotype score. There was a girl I saw on tiktok she had done bilateral mastectomy and chemo but no radiation and her cancer came back after 2 years in the same breast but grew on the inside of the skin since there was no breast tissue. She ended up doing surgery again and radiation after. Radiation is not a big deal and worth the peace of mind.

  • Sergai
    Sergai Member Posts: 8 Member
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    Bonnie, I had the mastectomy 15 days after my 65th birthday. I'll be 67 in January. One other difference is I am a male, as are about 1% of the cases. I had clear margins and there is limited area to spread, so that may have played into the no radiation decision. Good luck.

  • LifeInBloom100
    LifeInBloom100 Member Posts: 51 Member
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    Yes - I had the 91-gene blood test offered through my hospital network's genetic counseling. Tested negative for all 8 breast gene mutations (I also have a significant family history of breast cancer on my mother's side) but did discover I had a slight multicancer predisposition - a full mutation on the gene that protects against diffused gastric cancer (stomach, which actually my Dad passed from - duodenal), and a variant on the gene that protects against colon cancer. Might be a good idea to see what the story is, for choices about how to screen, if you're concerned about elevated risks and recurrence.