Super confused

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kris7
kris7 Member Posts: 4

Please forgive me if I am posting it under the wrong topic, I am quite new here still...

Was diagnosed with breast cancer in December 2017 and had lympectomy in January 2018. Originally there was found 2 tumours in one breast but during surgery 4 in total were removed. All were small , 3 of them only 5mm and one 14mm.

Report confirmed that the cancer is HER2 positive and there were some small positive margins.

Anyway, I recovered really well after the surgery, had a brief chat with the surgeon who said that probably oncologist will proceed with radiotherapy and hormonal treatment. However I had to wait for oncologist appointment for up until today. And the suggestions he had for me were quite a shock.

He said that the nature of my cancer would require chemotherapy, radiation and enforced menopause to stop producing the estrogen...

I am 37 and dont quite know what to think of it all. I refused chemotherapy but still thinking of surgical menopause. One option is to remove my ovaries surgically and the other option is have an injection once a month for the next 5 years to keep the menopause going on.

Anyone with the experience in the similar situation?

Somehow feels unreal, I feel so healthy and MRI which was made after surgery showed that all is clear, my lymph nodes are clear, 2 were checked...








Comments

  • moth
    moth Member Posts: 4,800
    edited April 2018

    Sorry you find yourself here & apparently facing a more aggressive form of cancer than you'd originally anticipated.

    Have you had oncotype testing done on your tumor samples to determine risk of recurrence?

    Have you run your scenario through sites such as the Predict? http://www.predict.nhs.uk/predict_v2.0.html

    (I'd suggest you put in the stats for your largest tumor)

    Has your team explained to you that while surgery removes the primary local tumors, breast cancer can recur, either locally or metastatically? The point of the chemo, radiation & hormone/targetted therapies is to prevent recurrence. You're very young - treatments are more aggressive for younger women because they want you to live for a long time. Much of oncology is still focused on 5-10 years survival rates but is that really what your goal is?

    Don't make hasty decisions until you have all the data. I think perhaps surgeons sometimes give a bit of a cheery outlook at first because their part is sort of simple - just cut everything out that they can. And breast cancer is more treatable than some other cancers because they can cut early stage tumors out. But that's not the whole story.... Take your time to understand the full implications and risks of this disease.

    There's lots of info on this site & on the community forums so I hope you continue to ask questions. If you make your diagnosis public in your sig line we can also provide more detailed info for you.

    best wishes



  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited April 2018

    Hi!

    Most patients whose breast cancer tests positive for an overexpression of the HER2+ protein do chemo. I assume that your oncologist told you that HER2+ cancer is very aggressive. Moth, HER2+ cancer patients do not have tumor samples sent out for an oncotype test. That test is only used for patients who are ER+/HER2-.

    I would suggest that you at least consider targeted therapy (Herceptin) if you choose not to do chemo. As for menopause, I do Zoladex once a month to achieve chemical menopause. That way, I can take an AI (Aromasin).

    If you want, you can take Tamoxifen instead of an AI without becoming menopausal. I'm not sure why your oncologist is so insistent on an AI for you since Tamoxifen is an alternative.

    If you wish to meet other triple positive (ER+/PR+/HER2+) women, stop by the Triple Positive board some time.

    Best wishes!

  • KBeee
    KBeee Member Posts: 5,109
    edited April 2018

    Surgeons should not tell you predictions about fuuire treatments needed. Surgery is their expertise; medical oncologists are the ones who are experts on treatments after surgery. I believe Oncotype is typically not used on HER2 cancers because the purpose of oncotype is to determine the benefit of chemo, and HER2 cancers are treated with Herceptin (and sometimes Perjeta) which is given with chemo. I understand your shock, but do understand that HER2 cancers are typically very aggressive and there are treatments to stop them, but they do require chemo. Size of the tumor does not impact aggressiveness. You had multiple tumors, which means your body is making cancer multiple places. You are young. You have many years still to live. I understand not wanting chemo. I've done it twice. Do understand though, that your risk of distant metastasis if you skip chemo and Herceptin, is high. Once cancer has spread to distant sites, it is not considered curable. Right now, you cancer has a high cure rate. Clear lymph nodes do not guarantee cancer has not spread; it only takes a cell or 2 to break away.

    Ultimately, this choice is yours, but make sure you understand fully the impact of your decision, and that you can live with your decision long term. If you can, then your decision is right for you. You might consider other opinions from other doctors to get advice on treatment options. I also think stopping by the triple positive board is a good idea. The folks there can let you know your options and how things have gone for them.

  • moth
    moth Member Posts: 4,800
    edited April 2018

    ooop yes, I missed it was HER2+, sorry!

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