Any story on not taking Tamoxifen but still survived >10 yrs?

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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited October 2015

    My MO has a number of patients on a half dose, he says that while there are no studies on it he feels that it's better than nothing. I'm currently taking a half dose.

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  • Cheesequake
    Cheesequake Member Posts: 264
    edited October 2015

    blueice, thanks for opening this topic, I'm interested too. I'm scheduled to go on Tamox when chemo ends this month. Even though my tumor was a triple positive 3.2cm IDC with a healthy helping of genetic disorder, I am also very worried about side effects and am tempted to skip it completely. I'm going to give it a shot...

    I've seen mention from dtad and others that 45-50% of women stop Tamoxifen due to side effects. Does anyone have a source for that info? My MO of course scoffed at that and said hardly anyone quits Tamox.

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  • tangandchris
    tangandchris Member Posts: 1,855
    edited October 2015

    My MO also told me that she has NEVER had a patient not go the full 5 years on Tamox and I didn't believe her for a second. I don't know if MO's choose to not listen or what, but I think they have a tendency toward just doing what is protocol. Now, this MO did tell me at one point that I could try half dosing or even going every other day with a full dose and working my way up to full dose.


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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited October 2015

    I'm so glad my MO is honest with me!

    Just a few of the many studies about adherence to endocrine therapy:

    http://www.ncbi.nlm.nih.gov/pubmed/24441675

    "adherence to adjuvant therapy in clinical practice is relatively poor, with only about 50% of women successfully completing 5-year therapy."

    http://www.ncbi.nlm.nih.gov/pubmed/17344666

    "In clinical practice settings, only 2 reports addressed longer-duration (>4 years) adherence to adjuvant tamoxifen use. In these, tamoxifen was prematurely discontinued by 30-50% of the patients."

    http://www.ncbi.nlm.nih.gov/pubmed/24113516

    "Adherence and persistence estimates have recently been summarized in a meta-regression analysis. For tamoxifen, adherence ranges from 79% at one year to 65% at five years, and for Aromatase Inhibitors (AI), from 80% at one year to 72% at five years. Persistence decreases with the increasing duration of treatment: from a high of 86% of patients persistent at 1 year to a low of 53% at five years for tamoxifen, and from 88% to 69% for AI."

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  • labelle
    labelle Member Posts: 721
    edited October 2015

    http://www.washingtonpost.com/wp-dyn/content/artic...

    The 2007 study cited in this article says about 1/3 quit prior to the 5 yrs/about 1/4 in the first year. Not really half, but certainly not "hardly anyone."

    Glad my oc was honest with me too-said that I'd probably be fine with or without it and when I chose not to take it, she said I wouldn't need to see her anymore. Since the breast center where I was treated doesn't do scans or tumor marker tests for those who have had early stage BC, all follow-up I would have had with OC would have been to look for / treat side effects of the Tamoxifen (liver function tests, etc.) Since I'm not taking it, I don't expect to see her again. Too bad not all our doctors are so honest. Just love the RO who told me RADS would be just like a sunburn. Ummmm..........no, I don't think so. It becomes really difficult to trust our doctors when it become apparent that some of them truly are not trustworthy or honest with us.

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  • bluepearl
    bluepearl Member Posts: 961
    edited October 2015

    At stage 0 you don't have invasive cancer so tamoxifen would be a preventative drug. There are other ways to prevent breast cancer by keeping weight down, good diet, exercise etc. but regular mammograms will keep you on top of any changes. When and if you do get invasive cancer, take the anti-hormonal....try as hard as you can to do so. It reduces recurrence by almost 50%. That said, my girlfriend had a 2.5+ cm IDC and only had surgery (lumpectomy)...she is almost 10 years out and ok......but I think she got a really lucky break and would never recommend that myself. I took half dose, then no dose the first time around and got another b.c. in other breast two years later. Sucks.

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  • Mgrisham
    Mgrisham Member Posts: 14
    edited October 2015

    I had right mastectomy in 2001 for 1 cm IDC with DCIS . I was 48 and took tamoxifen for 5 years. 14 years I developed IDC in left breast and now on AI. Did tamoxifen help my mo said it delay the second cancer. I guess I am one of the lucky ones I did not have side effects on either drug or gain wt

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  • gentianviolet
    gentianviolet Member Posts: 316
    edited October 2015

    Diagnosed in 2009, IDC right breast. Had a lumpectomy, radiation, Oncotype was 11, went on an AI but quit after 6 months because of hip/knee pain that kept me up at night. Was put on Tamoxifen ( half dose daily) and managed to stay on 4.6 years. Finally called it quits after limping the last year and a half that I was on it. Limping disappeared after 2-3 months off of Tamoxifen. So far all is okay with an annual MRI, fingers crossed, because we all know it is a crap shoot.

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  • Farmlovergrl
    Farmlovergrl Member Posts: 46
    edited November 2015

    Hi gentianviolet, I have been on Tamoxifen at half dose for about 2 months. I don't see how anyone takes 20mg. I have side effects on 10 mg. Have you ever had lymphedema? I have it in my arm and around tissue expander. Hope you are doing wonderful. I am 6 months out from surgery. No rads and no chemo. I feel like the rug has been pulled out from under me. My life has totally changed. I lost 16 healthy nodes because there was micromatastisis in the sentinel. My oncotype dx was an 8 on one end 6 on the other. Anxiety brought on other health problems. I wonder how many others have been on half dose Tam. long term and have done well. Best wishes of health and happiness to you and all who read this.

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  • gentianviolet
    gentianviolet Member Posts: 316
    edited November 2015

    Hi Farmlover - Initially I tried 20 mg. of tamoxifen, but within weeks I chose to do only 10mg. My onc was not happy about my choice however he did finally say that "half a dose is better than none." Yes, I have lymphedema in my upper right arm and the right quadrant of my chest. I no long wear a bra because it makes the chest edema worse. They found a micromet in the second sentinel node and then removed 12 more for a total of 14 and I did have rads, but no chemo. Your scores sound great, much lower than mine. My last visit to my onc (former onc retired) suggested that now that I am 6 years out I might consider tamoxifen again. I have been off tamoxifen since July of 2014, and oddly enough, I told him I would go back if I could try 5 mg and if I had side effects then I wanted to reduce it to half of 5mg. He agreed warning me that there have not been any clinical trials for those low doses. I have read studies that speak to the lower doses and if you desire that info I am happy to pass that site address on to you. In the meantime, good luck to you too, I know just how you feel about everything changes in that moment of hearing that you have cancer. I have moved on (well, kinda) but I still have worries about recurrence. Sending you good thoughts.

    Sorry, did not mean to hijack this tread about mets or recurrences.

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  • Farmlovergrl
    Farmlovergrl Member Posts: 46
    edited November 2015

    Thank you gentianviolet and I also apologize for being on the wrong thread. I am new to this.

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  • Begone
    Begone Member Posts: 3
    edited November 2015

    Today,I was told my Pet scan showed it spread to my liver, lungs and bones. I will have a MRI to see if has spread to my brain. I was diagnosed with IDC HER2+ do you know of any studies? Thanks

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  • Chevyboy
    Chevyboy Member Posts: 10,786
    edited November 2015

    Farmlove.... I saw you almost posted on the Insomnia thread...Ha! I followed you here, with the Tamoxifen.... I took it for 1 1/2 years, and woke up one morning and had lost my hearing! After a LOT of research, I found that "yes it can cause strokes" ..... that happens near your 8th cranial nerve in your brain stem... Otherwise I am doing good.

    I'm almost 6 years out.... It could have been a lot worse.... and that only happens to a few women, with a "certain gene"..... Just be aware of changes in your hearing, and your thinking and vision! .... Also make sure you read the warning signs with ANY drug, and research that....

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  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited November 2015

    I'm just about 9 years out from my diagnosis of Stage I IDC. After treatment I tried both Tamoxifen and Arimidex and could only tolerate the side effects for about 6 weeks. I did a lot of research about the percent benefit of taking the medication. It was only about 3%. Of course my doctors wanted me to keep taking it, but I just couldn't manage how bad I felt on the meds.

    I wish you all the best.

    Bren

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  • Cinderella57
    Cinderella57 Member Posts: 12
    edited November 2015

    I started it but stopped because it made me feel so awful. That was almost 16 years ago. It DID come back twice since my first diagnosis but I'm doing okay.

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  • Cheesequake
    Cheesequake Member Posts: 264
    edited November 2015

    Chevyboy, was the hearing loss permanent??

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  • Chevyboy
    Chevyboy Member Posts: 10,786
    edited November 2015

    Yes Cheese! My PC first treated it like "allergies".... but a week later, I lost hearing in my right ear... By this time, and after taking allergy meds for a month, and nothing helped, I went to the Oncologist... They were all baffled!

    My Husband said "It has to be something you are taking!" And all I was taking was Tamoxifen... for 1 1/2 years... So I quit the Tamoxifen... Finally went to an Otolaryngologist for a hearing test... After all that, they just said I had "profound hearing loss".... Left ear was worse.

    So I had to get hearing aids... A friend told me about Costco... I did buy them there... much cheaper than from a hearing specialist. I still have them, and love that I can hear...

    The point is, Tamoxifen is an ototoxic drug... just like chemo.... and with SOME women, with a certain gene, a "small infarct".... which is a stroke, can happen near the 8th cranial nerve, and it affects your hearing...

    But most Doctors do not really recognize this possibility! So I found all this out on my own, by researching everywhere..

    Also Cataracts... The warning labels do tell us this... but we think it can't happen... but with me it did... I have talked to a lot of women on THIS site, who have had the same thing happen.

    No, my hearing loss is permanent... the little "hairs" in your inner ear get damaged... just like your hair on your head, from chemo... but this won't come back...

    Maybe try a different type, like Femara? I was just too afraid to try anything else... also I am much older than you I see.... I'm much older than ANYbody...Ha! Take good care.... You can always PM me also, if you want to.... Happy Thanksgiving!

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  • Farmlovergrl
    Farmlovergrl Member Posts: 46
    edited December 2015

    Thanks for info Chevyboy.

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  • Farmlovergrl
    Farmlovergrl Member Posts: 46
    edited December 2015

    Thanks for info Chevyboy.

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  • Farmlovergrl
    Farmlovergrl Member Posts: 46
    edited December 2015

    So Bren-2007, did you take any natural products ts to lower your estrogen?

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  • bluepearl
    bluepearl Member Posts: 961
    edited January 2016

    My girlfriend had an IDC 2.5 cm grade 3 breast cancer , one node + and had surgery (lumpectomy)...that was that. She is in her 10th year and no recurrence. I wouldn't recommend that, though. My first b.c. I didn't take Tamoxifen and two years later, another primary in other breast.....tamoxifen may have killed that second primary. I FAITHFULLY take my tamoxifen now...I tried A.I.s but too much pain.

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  • Dayzeroze
    Dayzeroze Member Posts: 36
    edited January 2017

    this is what I did. 6 years laster I have mets.

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  • mittmott
    mittmott Member Posts: 409
    edited January 2017

    I had a lump in 1998 age 42, lcis took tamoxifen. was getting the runs. Stopped taking it. Following year another lump, which turned out to be nothing, but I got scared and went on my tamoxifen, then I had stage 1 in 2000, lump/radiation..Dr. took me of tamoxifen, said the cancer should have never broken through.and said I was too young for the other meds.. I was nervous, but she said it wouldn't work for me. I had a second cancer same breast in 2007. I had to have a mast. I opted for a double, wasn't going to do this again if I didn't have to. I am now cancer free 10 years, no tamoxifen. Always nervous, but somehow still doing ok


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