Tamoxifen after 5 yrs-to continue or not

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Icgsusnu1
Icgsusnu1 Member Posts: 5
edited December 2016 in Hormonal Therapy - Before, During, and After

Im 56 and was diagnosed with stage iia T2no, mo, triple positive, HER+ IDS November 2, 2011. I underwent chemo with HTC then bilateral mastectomy and all nodes were clean and Herceptin for a year. May 2013 I had a total hysterectomy. I have been on tamoxifen for 4.5 yrs now and take Venlaflaxin to help deal with it. Side affects-weight gain, hot flashes, insomnia, and now myofascial muscle pain in my legs-so bad in left leg I could hardly walk until I started having myofascial release massage therapy. Additionally, I am undergoing lymphatic therapy that has also helped tremendously. I am really trying to conquer this with natural therapy and life style but the only exercise I can do that is not painful is cycling.

The pain in my legs has altered my life dramatically and now I'm wondering if it's worth staying on it another 5 yrs. The reoccurrence scares me to death; but, life with chronic pain is taking its toll on me. The myofascial message therapy and lymphatic therapy along with healthy living is helping a lot and I'm hoping this will eventually get me back to a pain free life.

I have read that my body still secretes hormones despite the total hysterectomy. But how much and what are the risks?

Totally torn to stay on or get off??? Any insights would be so appreciated.

Thank you so much 😄


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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited October 2016

    I have been on Tam for 2.5 yrs. Few SE's so far. Weight gain, leg cramps, but not often. I feel like my memory is shot, but who knows? Has your DR suggested an Al? I have osteoporosis and osteopenia, so elected for Tam. I don't know how many studies have been done to measure a benefit from 10 yrs of Tam. I had a hysterectomy/oopherectomy also, 9 yrs prior to my DX. Your Adrenal gland produces Estrogen also, as does excess fat. Maybe you could try it for a few more months before you decide. It doesn't have to be 10 yrs, cut it to 6-7, if you aren't good with 10. You have done well to stay on it for 5. I think a lot of people don't even make it that far. You could always seek another opinion. Do what's right for you. Best wishes.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited October 2016

    Have you heard about the BCI test? Here is a link to another thread about it. https://community.breastcancer.org/forum/78/topics...

    I asked my onc about it but she had not heard of it. I'm going to reintroduce the topic at my next appointment. Might be worth seeing if insurance will cover it.

    I'm having leg aches too. Can't figure out if it is Arthur Itis, or the little white pill. Either way, it sucks.

    Take care. I agree with keepthefaith, you've done great.

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  • 123abc1611
    123abc1611 Member Posts: 29
    edited October 2016

    I was given choice ar 5 years whether to keep taking Tamoxifen or not. i really don't think it should have been up to me. At 7 years, I was diagnosed with uterine cancer which they said was probably linked to long-term use of Tamoxifen. After hysterectomy, I was taken off the Tamoxifen and put on Femera. Maybe your doctor could take you off of Tamoxifen and put you on something else so you won't feel defenseless.


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  • Icgsusnu1
    Icgsusnu1 Member Posts: 5
    edited October 2016

    thanks Keepthefaith. I really appreciate your encouragement. My MO said any alternative has worse SE on muscles and bones so he would not recommend it for me due to my struggles with tam.

    I just read an article today that talked about the brain producing estrogen...another factor to stay on it.


    Again, hank you so much

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  • Icgsusnu1
    Icgsusnu1 Member Posts: 5
    edited October 2016

    I never heard of Femera. I'll have to research and ask. Thank you so much.

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  • Icgsusnu1
    Icgsusnu1 Member Posts: 5
    edited October 2016

    Btw does your MO let you take anything to help with the insomnia? If so, what is it and how's its working for you?So far mine has only allowed melatonin...in researching the myofascial pain I found out lack of deep sleep to reset muscles and hormone imbalance are big causes! Thinking if I could change the sleep issue it may help the leg pain. And I could endure the tam longer...

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  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited October 2016

    After 5 years of Tamox my onco put me on Femara because of a study that came out that showed I would do better to switch to that for 5 years. My son-in-law's grandma refused to go off tamox because she was so afraid of getting cancer again even though her onco said she could stop it and stayed on it for about 15 years before she passed away from something else.

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  • wallycat
    wallycat Member Posts: 3,227
    edited October 2016

    If you have ILC, the thinking is it is not as beneficial as aromatase inhibitors.


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  • Icgsusnu1
    Icgsusnu1 Member Posts: 5
    edited October 2016

    I had IDC triple +...thanks.

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  • whitedove
    whitedove Member Posts: 292
    edited December 2016

    https://community.breastcancer.org/forum/78/topics...


    Hi,

    Just stopped Tamoxifen after 6 years. Feeling a little unsure if I will restart. Depending on future biopsies and ultrasound and ONC's suggestion...

    Posted this in Tamoxifen forum...

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited December 2016

    I just stopped Tamoxifen at the 5 year mark. All my SEs went away except my aching joints. No more dizziness, leg cramps, incontinence(mixed) & my brain seems to be working a little better. I developed uterine thickening & polyps. I have a new polyp that needs to be removed, but should be done with those after that.

    For me, my doctors(BS,MO,even my urologist?), tell me it will be only a small benefit for me to continue on endocrine therapy & not worth the potential SEs. None of them want to see me on an AI. "you need your bones"...... they tell me.........

    I'm sure I could continue on either an AI or Tamoxifen if I wanted to. But I'm done, done, done

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  • gracie22
    gracie22 Member Posts: 229
    edited December 2016

    I have HER2+++ cancer also, but only 20%ER+ and PR- so did not use any hormonal therapy. How ER + are you? I ask because if you are only slightly ER positive, the value of anti-hormonals (AI or tamox) for HER positive patients is questionable, and some oncs will leave it up to patients to decide if they want to continue on Tamox with difficult side effects since the benefit for HER2+ patients is hard to determine.

    There is also the issue of "crosstalk" with tamox in HER2 cancer. The non-scientific explanation is that HER2 positive cancer often (50% of the time or more) makes patients tamox-resistant. A link is included below, and if you google "HER+ cancer and crosstalk with taxomifen" you can read more about it. I don't know if the same applies to AIs. The second link below includes some AI info, but I am not clear if the same issue exists with AIs.

    https://www.ncbi.nlm.nih.gov/pubmed/22964581

    http://www.medscape.com/viewarticle/580741_2


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