After 15 months of Tamoxifen I'm thinking about quitting

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cjafarm
cjafarm Member Posts: 44

Last week I had terrible pains in the area of the gallbladder. But five years ago, I had my gallbladder removed. Turned out it was a gall stone blocking a common duct from the liver.

From the CT scan for the stone, they found a cyst on my left ovary (I'm post-menopausal).

The gallstone and the cyst can be side effects of the Tamoxifen.

Are these reason enough request stopping the Tamoxifen?

Comments

  • Annette47
    Annette47 Member Posts: 957
    edited March 2017

    You don’t necessarily need to request to stop it. It’s your body, your treatment, you make the decisions, and can always stop it against medical advice if you wish. That said, I would have a conversation with the oncologist to make sure you understand your risks with and without it, and then only you can determine what will be right for you.

  • 4happygirl
    4happygirl Member Posts: 39
    edited April 2017

    Based on your diagnosis, your risk of recurrence is probably not that high. You have no risk of contra lateral BC and you had no lymph node involvement. You can access the tool oncologists use to assess risk of recurrence online. Then I would have a frank talk with your MO to get a feeling for what your prognosis is for disease free survival. Be aware that there is a lot of confusion about how to express these numbers, so make sure you have done homework before you talk to your MO so you can ask informed questions. Example: my risk of dying of breast cancer is 12%. If I take hormone therapy for 5 years, it falls to 10%. My MO would express that as a 17% improvement. (2% divided by 12%) When you put it that way it sounds pretty good, but it's still only 2%. Then you can make your call based on that. I would also take into consideration your Oncotype DX score. The Oncotype website is super helpful in telling you what the score really means in terms of recurrence. The purpose of the Oncotype is to weigh the risks of chemo against the risk of recurrence.

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

    A little confused. Aren't survival rates and recurrence rates 2 different things?

  • rianne2580
    rianne2580 Member Posts: 191
    edited April 2017

    Hi all,

    I completed the 5 year tamoxifen plan. When I stopped, wonderful changes occurred. On TX I had bloody discharge, very dry and painful in the whole area and painful sex. Somehow I developed 3rd stage CKD but probably not from TX. I had my ovaries removed in 1997, so I had almost no estrogen left in me. I'm not overweight, but I happily lost 15 lb. after quitting TX. I feel better, my joints don't hurt, I sleep better and overall my attitude is positive. TX has been around for so long and tested and tested. That's why I chose it, but I will not do the 10 year stint. My oncologist left the decision up to me to quit.

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

    rianne, it is hard to reply to you, since you didn't fill out your diagnosis. Best wishes, regardless.

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