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No hormone therapy needed?

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Dh305
Dh305 Member Posts: 9

I recently had a double mastectomy and am in the process of reconstruction.

All sentinel node‘s (8) we’re negative, and I had lobular invasive and LCIS. The Largest cancer was 3mm.

PR +, ER + HER2 negative.

Stage 1B

My breast surgeon said there is no need for radiation or chemo therapy due to the size of the largest cancer being only 3mm

Yesterday, I had a consultation with the medical oncologist, and she said that no hormone therapy is required because it would yield about a 1% benefit to me.

I asked her about an oncoptype score, and she said for tumors that small that they do not request one

While I consider myself extremely fortunate, I am just wondering if any of this seems normal? I was expecting at a minimum that they would put me on hormone therapy, likely tamoxifen, since I am 44 years old and premenopausal

Would appreciate anyone’s insight or thoughts if I should get a second opinion on this?

Thank you and god bless



Comments

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited March 2022
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    With such a small invasive cancer, your risk of metastasis is probably in the range of 2%-3%. Anti-hormone therapy reduces metastatic risk by approximately 1/3rd. So as your MO said, your benefit would be approx. a 1% reduction in metastatic risk.

    The risk of serious side effects from anti-hormone therapy differs by individual, based on pre-existing conditions and age. But for someone who has few other conditions, the risk is about 1%-2%. This includes other cancers, DVT/PE and other very serious health issues. Separate from that, most patients experience some quality-of-life side effects, which are easy and manageable for some and very difficult for others.

    That is what is behind your MO's recommendation. With my first diagnosis, I had just a microinvasion (only 1mm, so smaller than yours) and my MO recommended against anti-hormone therapy.

    And yes, at 3mm, your tumor is too small for the Oncotype test.

    Ultimately it should be your decision and if you wish to take Tamoxifen, you can ask if your MO would prescribe it.

    By the way, why are you Stage IB? Did you MO give you this staging? What you describe sounds like Stage IA. Only the size of the invasive tumor is counted in staging, and you are node negative. T1a, N0, M0 is Stage IA.


    Hope that helps.





  • salamandra
    salamandra Member Posts: 736
    edited March 2022
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    Beesie always has the best knowledge and advice.

    I would say that depending on your risk factors for a new breast cancer, I might consider asking about prophylactic hormone medicine (to prevent a new cancer) even if your doctor doesn't think it's necessary for prevention of recurrence (of the current cancer).

    I had a fair amount of family history, diagnosed fairly young (a bit younger than you), and my genetic testing (done immediately before diagnosis) showed a 57% lifetime chance of breast cancer. If I hadn't actually come back malignant, I would have looked for a high risk treatment center and and at least asked about prophylactic hormonal treatment. There is a greater choice of drugs and dose of drugs for that.

    In your shoes, I don't know, I might seek out a second opinion on the hormone question. But the thing is, it sounds like it doesn't have to be urgent. You could finish with the surgery/radiation for this cancer first. and whenever you are ready, follow up.


  • Dh305
    Dh305 Member Posts: 9
    edited March 2022
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    Thank you for your thorough replies!

    I too am confused about the staging. I have a call into the MO to find out why they are saying “1B“


  • ladyc2020
    ladyc2020 Member Posts: 87
    edited March 2022
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    I have talked to my MO about having a double mastectomy and he would be fine with me coming off my OS and AI. I had lumpectomy and rads - and still have about a 13% chance of reoccurrence without meds. He told me it would be reduced to about 2-3% if I had the bmx ( wish they told me this before surgery) as all the breast tissue is taken. So unless there is an escaped cancer cell on the skin, very likely to be fine without the meds.

  • Mememee
    Mememee Member Posts: 33
    edited March 2022
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    When I was first diagnosed with DCIS, my surgery also uncovered LBIS in the same breast. I was happy with my decision to have a bilateral mastectomy with DIEP reconstruction during the same surgery. My pathology was T0N0 since my nodes were also negative. The OS said I didn't need hormone therapy (I was in early menopause), no radiation and no chemo. Similar to you OS advice

    There are a few types of mastectomies and each revoes a different amount of breast tissue and skin

    1 traditional mastectomy with a flat closure - most breast and skin tissue left behind

    2 traditional mastectomy with no reconstruction - minimal breast and skin tissue left behind, more than a flat closure

    3 skin sparing mastectomy (SSM) with nipple removal - greater amount of skin left for reconstruction and more breast tissue than traditional mastectomy

    4 skin sparing mastectomy without nipple removal - similar skin left behind as regular SSM, and more breast tissue than SSM since the nipple will always have some cells.

    There has been studies done that do show a difference in recurrence rates between SSM and traditional mastectomies. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC53393...

    Less than 18 months after my mastectomy, I was diagnosed with breast cancer again, this time IDC that grew into my chest wall. When my breast cancer came back, it was found early, because I continue to be monitored with a an MRI every six months. That monitoring saved my life and made it more treatable. There is nothing I would have done differently to treat my first breast cancer.Given the information I had at that time, I made the best decision I would. Hindsight is irrelevant.

    Regardless of the decision you make, there is no guarantee you will or won't have a recurrence. Have faith in your decisions and find ways to support yourself as you continue recovering.

  • Dh305
    Dh305 Member Posts: 9
    edited March 2022
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    thank you all. So, maybe we should try hormone therapy? I am officially a T1A.


    I am so sorry to hear that you had a recurrence even after a BMX. I really don't know what to do

  • gracestella1948
    gracestella1948 Member Posts: 12
    edited March 2022
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    Hello Iam new to this site and forum. recently diagnosed with stage 1a dcis and invasive .05 mm. T1mi.I started out with stage 0 dcis and no nodes were tested on initial biopsy. Dr said because the invasive was so small no nodes have to be tested but they recommended full breast radiation and hormone therapy. I had a wide incision lumpectomy. got second opinion after lumpectomy and still no node testing. ER and PR positive and HER negative. Iam 73 years old.

  • moderators
    moderators Posts: 7,911
    edited March 2022
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    Hi gracestella, we welcome you here. Do you feel comfortable with your treatment team? Glad you found us here.

  • gracestella1948
    gracestella1948 Member Posts: 12
    edited March 2022
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    Dr. suggested I take hormone therapy but left it up to me. I think the studies show that women over 70 do not benefit from it. Is that true? I dont want to forgo anything because of my age. Thank you for welcoming me to the community.

  • rah2464
    rah2464 Member Posts: 1,192
    edited March 2022
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    Gracestella - did your oncologist recommend taking an AI or was it your surgeon? If your MO, She/He should have been able to give you statistics on reducing recurrence risk based on your age and tumor characteristics. If I knew how to do the links, there are some good recurrence risk calculators out there that factor in your age and tumor status information. Maybe one of the other members will come along and provide that info.

  • hangin
    hangin Member Posts: 20
    edited July 2023
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    Hello Dh305 ~ I came across your post & had somewhat of a similar experience. I opted for a double mastectomy for my BC. And was told that no hormone therapy would be required, due to yielding a low benefit in my case. When I requested to have an Oncotype test my Oncology team said, that for small tumor's they don’t do them & here 🇨🇦, they utilize them as a guide for Chemo consideration patients etc. (It does suck though, that they don’t run the test for all BC patients regardless of tumor size etc.) Wishing you the best of everything always 🤗

  • hangin
    hangin Member Posts: 20
    edited July 2023
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    Hello Bessie.is.out-of-office ~ I just wanted to say thank you for enclosing the explanation / break down when you responded to Dh305. Well done & well explained. Wishing you the best of everything always 🤗