need encouragement, I regret doing chemo

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MTNCLMBR
MTNCLMBR Member Posts: 14
edited November 2019 in Chemotherapy - Before, During, and After

When I was 36 I had an 8mm IDC, grade 3, stage 1a. No nodes involved.

Had lumpectomy, sentinal node removed, 4 rounds of taxotere/cytoxan, and then radiation. Now I'm 1.5years out still taking tamoxifen.

I feel like I still have PTSD from this whole experience. Mostly, I feel I was pressured into the chemo and I still don't understand why I had to do it. It hadn't spread ANYWHERE, so what was the chemo targeting? The first place it would have spread would be the sentinel node, and that has been removed. It was only an 8mm tumor. So tiny!

I guess the reason I am upset about them chemo is because I don't understand the benefit I am getting from it. Being permanently in menopause right now pisses me off for some reason. Why? I don't know. I feel like I've been robbed of my womanhood and youth. And I'm getting really sick of taking tamoxifen. I'm just over this and want to forget about it all. Having to go to follow ups and take a useless pill every day is like putting lemon juice in a wound.

Perhaps I'm just still in shock from this. I'm trying to be grateful that I did everything I could and I am truly grateful that I didn't have a worse cancer and I definitely won't die from this, thank god.

I just feel like the treatment was overkill and I wish I could see some studies on the exact stage and grade of cancer I had at my exact age to validate all the drugs. I can only find generalized studies, where they lump all the breast cancers in one. I'm trying to trust my doctor. He said if there's going to be a recurrence it will be in the first 2.5 years. So maybe once I pass that mark I can just stop with the pills and pointless mammograms. All they say is "breast tissue is very dense. Can't see anything". WHAT'S THE POINT?

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  • Deets2019
    Deets2019 Member Posts: 3
    edited November 2019

    Hi MTNCLMBR - I am surprised that you were advised chemotherapy with a 8 mm tumor. The one issue was that yours was a grade 3 tumor which means your K167 must have been high (check your pathology report!). When I knew I had a 30% K167 and a grade 3, I figured my recurrence score would not be low and it came in as 28, high intermediate. I chose to do chemo, radiation (yet to get started but shortly) and then AI, etc. The other question I have is, did you NOT have an OncotypeDx recurrence score done on your tumor? That would have informed you if you needed to do chemo (1-25 is the scoring system, but over 18 is already in a danger zone not to do chemo). If you had been low, like 8-11 you should have been spared from chemo based on TAILORX study, etc. You fit in with ER+PR+HER2- - this is what mine was.

    Again, I am really surprised you had a tiny tumor and ended up with chemo, but again the recurrence score is the main question I would want to know! My daughter is 40 and I am constantly telling her to get started with mammograms now. Breast cancer is way too prevalent and scary. Our food and environment are toxic. I am totally off millk products (estrogen), zero or tihy amount of sugar intake per day and stepping up on my exercising. My problem was that I did not have a mammogram done in 7 years. I am lucky my tumor was only 2 cm and no nodes! But looking back at my mammograms over 20 years, there was something evolving over 10 years but always called "benign." All the comments were on the left and around 1-2 o'clock way back then, and my tumor was at 2 o'clock similar area. Let me know your thoughts. Deets

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  • MTNCLMBR
    MTNCLMBR Member Posts: 14
    edited November 2019

    my doctor did not do the oncotype test because he said “it will be high”. I said, “what if it isn’t?” And he replied, “it will be high”.

    I don’t see anything about k167 on my report.

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  • gb2115
    gb2115 Member Posts: 1,894
    edited November 2019

    I can't believe he said if there's going to be a recurrence it will be within 2.5 years. That's an odd thing to say to you. Many recurrences happen later....

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited November 2019

    Hi Mtnclmbr. I do find it odd that your doctor didn't do the Oncotype test, but some doctors do tend to be the "you're young, let's throw everything at it it" type. But since surgery, chemo and radiation are all done, it seems like you're asking how to simply accept what happened in the past and move on to a more peaceful state. Unless you know you are a poor Tamoxifen metabolizer (and there's a genetic test for that) it's not a "useless pill" and you are not getting "pointless mammograms." No matter how tiny the original clump of cancer cells were, you will be at a higher than normal risk of breast cancer recurrence for the rest of your life -- which may be another 50 years! So my advice would be to think of cancer as a chronic disease you are managing, just like diabetes or rosacea or acne.

    From there you could try learning more about breast cancer so you feel more in control. Or, you can try to ignore it, and focus on your children and family. There is no simple answer I'm afraid, but all of us need to learn how to stop regretting things that are in the rearview mirror. We did our best -- you did your best -- and really it's the future that matters now. I wish you peace.

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  • Beesie
    Beesie Member Posts: 12,240
    edited November 2019

    "It hadn't spread ANYWHERE, so what was the chemo targeting?"

    Ah, but you don't know that it hadn't spread anywhere. Yes, the sentinel node is the most obvious place for breast cancer to spread to first, but sometimes breast cancer spreads through the bloodstream. And a clear sentinel node doesn't mean that a few sneaky cancer cells might not have passed through, leaving no trace.

    That's why you had chemo, because cancer is a sneaky SOB that sometimes spreads without leaving a trace or providing any indication. And if a few rogue cells had moved into your body, the role of chemo was to kill those cancer cells off before they started to multiply and developed into an identifiable metastatic cancer.

    Take a look at CancerMath: http://www.lifemath.net/cancer/breastcancer/therapy/index.php

    When I input the information you've provided about your diagnosis, the model calculates that you had a 12.3% chance of dying from your diagnosis within 15 years. Your chemo regimen reduced that risk to 6.9%. The addition of Tamoxifen takes the risk down to 4.7%.

    And take a look at the Stage IV forum, and the signature lines of the women posting there. Certainly many of these women started off with more advanced diagnoses than yours, but there are quite a few Stage I and Stage II women who now have mets, and even some who had smaller tumors and seemingly more favorable initial diagnoses than yours.

    Lastly, with an ER+/PR+/HER2- cancer, unfortunately your risk of recurrence goes well beyond 2 1/2 years. In fact, this subtype of breast cancer tends to have more late recurrences than any other subtype:

    "Women with early-stage oestrogen receptor (ER)-positive (ER+) breast cancer who receive standard endocrine therapy for 5 years remain at risk of distant recurrence for at least 15 years after treatment discontinuation."

    "Oestrogen receptor (ER)-positive (ER+) breast cancer is at least as likely to recur beyond 5 years as it is before 5 years from diagnosis."

    I'm sorry that you are struggling with this, and I understand why you are. But being diagnosed with a grade 3 breast cancer at the age of 36 is serious, even if the cancer was small. I think most oncologists would recommend chemo to someone in your situation, and by having chemo, you significantly increased the odds that this diagnosis won't come back as a metastatic recurrence.

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