Any with ER/PR+ HER2- refuse tamox and cancer free 5 yrs later?

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9lives70
9lives70 Member Posts: 127
edited January 2018 in Hormonal Therapy - Before, During, and After

I'm considering refusing Tamoxifen after double mastectomy. I don't take medicine barely even take an Advil so the thought of putting this in my body for the next five or more years is terrifying! I've seen here that there were/are some women that refused the hormone therapy I just don't know if they're still doing well today? Trying to get an idea of who is still thriving five or more years later after having refused this, and if so what those brave women did instead?

I'm 48...awaiting surger

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  • Lisey
    Lisey Member Posts: 1,053
    edited January 2017

    9lives, why don't you at least TRY it and see how you feel? MANY of us have ZERO side effects. To me it's a little sugar pill. You could be like that as well and the benefits are huge in taking it.

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  • 9lives70
    9lives70 Member Posts: 127
    edited January 2017

    Hi Lisey,

    Most likely I will. The se's I see people complaining about here are just scaring me along with the stats indicating that something like 40-45% of people stop taking it before 5 years because they can't take the SE's. That seems like a huge number to me. But I will most likely try it

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  • cive
    cive Member Posts: 709
    edited January 2017

    I was cancer free after 5 years of not taking an estrogen suppressant.  But after 11 years, I was diagnosed with metastatic breast cancer to the lungs.  But I also know people who took an estrogen suppressant and still ended up with mets.

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  • tangandchris
    tangandchris Member Posts: 1,855
    edited January 2017

    I agree that you should at least try and hopefully you are lucky and won't have issues with it.

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  • dtad
    dtad Member Posts: 2,323
    edited January 2017

    9lives70....I don't think you will find much information on this subject. There really are no studies done on those of us who refuse anti hormone treatment. I agree that you could try it and see how you feel. There are some permanent SE from aromatase inhibitors but very rare with Tamoxifen. Good luck to all navigating this disease.

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  • pupmom
    pupmom Member Posts: 5,068
    edited January 2017

    Dtad, you threw a lot of info out there. I'm curious if you can link studies about "permanent SE from aromatase inhibitors but very rare with Tamoxifen."

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  • dtad
    dtad Member Posts: 2,323
    edited January 2017

    yorkiemom...the permanent SEs from aromatase inhibitors stem from joint issues. You are right, I did throw a lot out there. I will look for studies that confirm my statement. I do know that they are few and far between. Who is going to pay for them? Certainly not the drug companies? However, I must say that the topic on this thread is about refusing Tamoxifen. There are other threads which address those who do well on them. I think we can all benefit from staying on topic. I'm post menopausal and refused aromatase inhibitors. No sure what my decision would be if I was premenopausal. I do several things to lower my estrogen naturally. Please feel free to PM if anyone wants more details. Good luck to all navigating this disease and making these tough decisions. We need to support each other no matter what decisions are made.

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  • icey
    icey Member Posts: 141
    edited January 2017

    I was diagnosied in 2009. I had surgery and then radiation. I refused the tamoxifen. I was fine for 6 years but just dx with mets last week. So I am not sure if I made the right choice or not. Maybe if I took it for 10 year it would have been ok


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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited January 2017

    Tamoxifen can cause blood clots, cataracts and increase the chance of endometrial cancer (and in women who’ve had hysterectomies, retroperitoneal cancer—i.e., the rear of the lower abdominal cavity where the uterus used to be). However, it actually can strengthen bones. All in all, IMHO the risks of not taking endocrine therapy are more serious in the long term.

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  • KBeee
    KBeee Member Posts: 5,109
    edited January 2017

    Thete are likely many who refuse it and do fine. There are also many who refuse it and have a recurrence. You do not know which group you'd fall into. As Lisey said, many women have no side effects. Many of them do not post about it so what you see here is skewed. Ultimately though, only you can decide what's best for you

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  • SJI
    SJI Member Posts: 69
    edited July 2017

    I see the oncologist next Monday - finished radiation last week of June. I am 99 percent sure I will not be taking any hormone therapy. I'll listen to the doctor but doubt he'll convince me. There are several reasons behind my decision. Estrogen is needed for a lot of bodily functions. I'm losing weight to lower the estrogen produced by my body. I had a hysterectomy 10 years ago. I'm 64-years-old and don't want to spend time not feeling well. I live alone and am self-employed so trying to keep going while dealing with side effects is not something that is really possible. I don't think enough research has been done on the effectiveness with lobular carcinoma.

    Other concerns are possible bone loss since I already have osteopenia of the lower spine. I am also concerned about interactions with anti-depressants.

    I realize that not everyone gets side effects and that there are a variety of generics to switch to. But I'm more worried about the effects from the loss of estrogen. Also I'm ready to move on. I know that sounds ridiculous but I want to put this behind me except for the checkups. I know this is a risk, but I think it is a relatively small one.

    So anyway, that's my reasoning and my plan. We'll see what the doctor says on Monday.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2017

    It's your call SJI of course but as ChiSandy posted Tamoxifen strengthens the bones. Arimidex however, attacks them. Initially I was on Arimidex because I was post menopausal. Then I was DX with borderline osteoporosis so my MO switched me. I am 6 years out next month.

    I did not have major side effects from the drug. I did have joint pain and trouble concentrating at times. I was concerned about taking it because I had a blood clot when I was 16. My ONC said no worries because I have had 2 children since then. She also decided 5 years was enough for me. No need for me to continue taking it and risk having one of the side effects like a blood clot.

    I know there are a number of women who have suffered with debilitating side effects from Tamoxifen. Then it becomes a quality of life issue.

    I had IDC, Stage 1b, Grade 1. I had a lumpectomy followed by 33 Rads treatments. My Oncotype score was 11 so I dodged chemo.

    Whatever you decide make sure you don't second guess yourself. Also it's your life not your doctors so regardless what he recommends it's your decision.

    Diane



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  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited July 2017

    Maybe just try it. I'm four months in with Tamoxifen with no major SEs. Really nothing I can completely attribute. (However, I'm close to menopause at 49, so perhaps my body was already encountering some issues.)

    Good luck to you!

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  • illimae
    illimae Member Posts: 5,710
    edited July 2017

    I hate taking pills too but this is the recommended treatment for ER + premenopausal women, so I began it yesterday. I know it too soon to tell but so far, so good. Also, I'm only 42 and stage IV, I want as many years with my husband as possible. For me it would be too risky not to take.

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  • Peetie1
    Peetie1 Member Posts: 73
    edited July 2017

    SJI-You and I finished radiation at about the same time, and I am also in the process of deciding if I am going to take Tamoxifen or not (I am pre-menopausal so this is the only option). I know this is not a popular opinion, but right now I am leaning toward not taking it as well.

    My Mammaprint score is Luminal Type A Low Chance of Recurrence. There are just so many horror stories, and my overall benefit if the medication is 50% effective is 2.5%. I am not sure that is enough of a benefit. I am taking a daily low dose aspirin (20% benefit in reducing breast cancer, 60% reduction in colon cancer new study May 2017), and I have started walking three miles in an hour daily on the treadmill. I have also changed to the diet recommended by my cancer treatment center. I am worried about a recurrence or mets, but I am also really worried about quality of life. I wonder if anybody else out there is looking at things in the same way??

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  • SJI
    SJI Member Posts: 69
    edited July 2017

    Peetie!: I finished rads on June 28 and saw the MO in mid July. He wants to put me on Tamoxifen. In order to reduce the chance of worsening hot flashes, I'm supposed to get acupuncture treatments first. I plan to start those this week.

    He told me my risk for recurrence was between 15 to 20 percent. If I continue my exercise regime - which is 3 hours of cardio a week - the risk is reduced 40 percent to 9 to 12 percent. If I take Tamoxifen it reduces the risk another 50 percent to 4.5 to 6 percent.

    I'm really apprehensive about side effects of hormone therapy especially joint pain, eye problems and depression. I don't know that an additional 4.5 to 6 percent risk reduction is worth it. I'm 64, my lobular cancer was slow growing, Stage I Grade I. If I was younger, or if it was a more aggressive cancer I'd take the drugs. I expect to have many more years of being active and healthy and don't want to deal with side effects. It seems going to zero estrogen is just asking for trouble.

    What's silly, is I'm worried the MO will get angry if I decide not to take it.

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  • Jana22
    Jana22 Member Posts: 1
    edited July 2017

    Hello, I'm 46 yo finished radiation in Feb. had invasive lobular hormone positive breast cancer in my nipple. It was removed with wide margins. Tamoxifen made me very ill. Since I was premenopausal I started Lupron to put me in menopause, 3 injections I was in menopause however, I was experiencing severe heart palpitations insomnia & muscle spasms. Femera (AI) was added last month and now my bones hurt on top of the other symptoms. Has anyone else had this type of response to Lupron with Femera? Now considering having my ovaries removed (might cause less side effects than the Lupron did) and not taking AI. My quality of life Is very poor now. I feel sick every day. Thoughts please

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  • dixiebell
    dixiebell Member Posts: 280
    edited January 2018

    I took it and 26 months later stage 4. I had an oncotype of 5. 

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  • tgtg
    tgtg Member Posts: 266
    edited January 2018

    Just passed the 5-year anniversary of surgery (lx, 1/7/13), and all imaging (3D mammo and MRI) declares me cancer-free. And I reached this point without taking any anti-hormonal treatment at all., just had rads to catch any "rogue" cells. With no nodal involvement, clean margins, and stage and grade 1 stats, and my age and exercise ethic, my docs agreed with my decision, I should add.

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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited January 2018

    I would encourage you to at least try it. When I first started tamoxifen I had some bad side effects and almost quit taking it. My BS and MO nurse practitioner persuaded me to stick with it - they said as my body adjusts, the side effects might get better. I was skeptical, but they were right. I stuck with it, and after a couple months I had almost no side effects from it.

    Fast-forward some months, and I was diagnosed with a recurrence despite being on tamoxifen. That made me really glad I hadn't quit tamoxifen for two reasons: because it might have helped slow down the recurrence, and at least I knew that I did everything I could to prevent the recurrence. If I had quit the tamoxifen, I would have had the recurrence anyway and been really hard on myself about it.

    That's just what happened to me. It's ultimately an individual choice, but I would still encourage you to try it for at least a few months. Best wishes to you!

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  • Mememee
    Mememee Member Posts: 57
    edited January 2018

    I just had a double mastectomy, so I didn’t have to do radiation or take tamoxifen. So far my oncologist hasn’t suggested I should take it. Dr have varying opinions whether it’s needed with double mastectomy, you could get a second opinion.

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited January 2018

    Mememee:

    To ensure that you fully understand the details of your diagnosis, be sure to obtain copies of the complete pathology reports (and any addenda or supplements) from all biopsies and surgeries for your review and records.

    Your profile is currently showing "IDC, Right, 6cm+, Stage IB, Grade 3, 0/2 nodes, ER+/PR+", which seems incorrect.

    In the absence of the results of a prognostic test (e.g., OncotypeDX for invasive disease), a 6cm+, node-negative IDC would be Stage IIB (pT3 N0 M0) (T3 Tumor > 5 cm in greatest dimension).

    In contrast, In the absence of the results of a prognostic test (e.g., OncotypeDX for invasive disease), a Stage IB tumor (pT1 N1mi M0) would be much smaller (T1 Tumor ≤ 2 cm in greatest dimension) and would have a specific level of lymph node involvement (pN1mi = Micrometastases (greater than 0.2 mm and/or more than 200 cells, but none greater than 2.0 mm)).

    Perhaps you had a large area of DCIS (a "non-invasive" condition) plus an invasive breast cancer (IDC)? When IDC is present, the size component of the stage (e.g., T1, T2, T3) is determined from the size of the IDC (not the DCIS).

    When both DCIS and IDC are present, the features of the invasive breast cancer (i.e., the IDC) typically determine the need for systemic drug treatment(s). Please request clarification from your team regarding your diagnosis, stage, and the features of the IDC.

    When IDC is present, under NCCN guidelines, it should be tested for ER, PR and HER2 status. Please inquire about the HER2 status of any IDC.

    Please note that mastectomy is a local treatment only, and does not obviate the need for drug treatment(s) in those with invasive breast cancer whose distant recurrence risk may warrant drug therapy. So, if you have invasive breast cancer (e.g. IDC), be sure to make an appointment with a Medical Oncologist to obtain an estimate of your distant (metastatic) recurrence risk and expert advice regarding whether you should receive systemic drug treatment(s) in light of same. (Drug treatment is not in the area of expertise of surgeons.)

    BarredOwl

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