Tamoxifin and uterine cancer

Options
roseann4
roseann4 Member Posts: 992 Member
edited March 2014 in Breast Cancer #1
I'm 59 and just had my one year anniversary of my diagnosis. A client of mine who is 38 was diagnosed in April 09. We both had Stage 1, node negative bc with radiation treatment followed by hormone theropy. I am on Arimidex because I am post menopausal. She is on tamoxifen because she is pre menopausal. She has been on tamoxifin for 7 - 8 months. She just received word from her doctor that she has uterine cancer and he wants to see her tomorrow. I have read that there can be an increased risk of uterine cancer with tamoxifen but after only 8 months? Anyone have experience or advise for her? Thanks.

Roseann

Comments

  • sunny_girl
    sunny_girl Member Posts: 33
    Options
    Tamoxifen -- NYT article
    Roseann,

    I truly hope your friend has a "normal" case of uterine cancer, which is highly treatable.

    Below is a copy of an article in the New York Times from December. It was written, apparently, to chastize women who are healthy, but at high risk of developing breast cancer, and who refuse to take Tamoxifen to prevent breast cancer. About half way down, it sumarize the risk to healthy women from taking Tamoxifen.

    It says that among a representative group of 1,000 healthy 52 year-old women, 19 could be expected to get breast cancer, but 9 will avoid it if they take the drug. Sounds good. BUT here is the fine print. In order to prevent 9 cases of breast cancer:

    "the drug would be expected to cause"
    - 21 additional cases of endometrial cancer (common endometrial cancer is normally survived by 90%+, but from other research I've read, up to 20% of endometrial cancer caused by Tamoxifen can be a VERY deadly form of the cancer.)
    - 21 would develop blood clots (beyond the normal number)
    - 31 would develop cataracts (beyond the normal numbner)
    - 12 would develop sexual problems (beyond the normal number)
    - And 120 will develop hot flashes, changes in vaginal discharge or irregular periods (beyond the women who would normally be expected to develop all of these symptoms during menopause).


    December 14, 2009
    When Lowering the Odds of Cancer Isn’t Enough
    By TARA PARKER-POPE
    If someone invented a pill to cut a cancer risk in half, would you take it?
    Who wouldn’t?
    Apparently the answer is millions of women — people like Cindy Birkhold of Sarasota, Fla.
    The pill is tamoxifen, and Ms. Birkhold, now 52, was considered an ideal candidate for it: she tested positive for a breast cancer gene, her mother had ovarian cancer, and her aunt had breast cancer. Yet rather than take tamoxifen, she opted for surgery to remove her breasts and ovaries.
    “I even went so far as to get the prescription” for tamoxifen, she said. “But then I started reading more and decided this isn’t the way I’m going to go. I don’t like to take drugs.”
    Such decisions have become a topic of growing concern among doctors and researchers, who are increasingly focused on treatments to prevent cancer in high-risk patients.
    While many kinds of cancer are resistant to such treatments, tamoxifen is well documented to prevent breast cancer in many women at high risk for it. Now another drug, raloxifene, has been shown to have a similar effect, and a class of drugs called aromatase inhibitors may also be useful. And for men, finasteride has been shown to lower the risk of prostate cancer.
    But none of these new chemoprevention drugs will do any good if patients do not use them. University of Michigan set out to learn why they don’t.
    A woman is considered to be at high risk for breast cancer if she is over 40 and has a mother, sister or daughter with the disease, or has a history of atypical cells on a breast biopsy. Tamoxifen lowers a woman’s risk for developing breast cancer by interfering with the activity of estrogen in the body.
    The researchers looked at 632 women whose five-year risk for breast cancer made them candidates for the drug. To find out whether the problem was one of information, the scientists created a detailed Internet-based decision tool tailored to each woman’s individual risk.
    For instance, a 52-year-old woman who had her first child after age 30, and whose own mother had breast cancer, has a five-year risk of 1.9 percent, according to the Gail risk score, a widely accepted statistical model. That means among 1,000 similar women, 19 would be expected to develop breast cancer over the next five years.
    If those women all took tamoxifen, however, 9 of those women would avoid breast cancer — and, as a bonus, 13 would avoid broken bones from osteoporosis.
    It is true that tamoxifen can have side effects, some of them serious. Among 1,000 similar 52-year-old women, the drug would be expected to cause 21 additional cases of endometrial cancer, a cancer of the uterine lining that is typically treatable when caught early. An additional 21 would develop blood clots, 31 would develop cataracts and 12 would develop sexual problems. And while more than half of the 1,000 women would naturally develop hormonal symptoms like hot flashes, changes in vaginal discharge or irregular periods, tamoxifen would cause those symptoms in about an additional 120 women.
    While these risks are not to be taken lightly, neither are the risks of failing to use tamoxifen; its benefits for breast and bone are substantial. Yet virtually every woman in the study said she would be unlikely to take the drug. Just 6 percent said they would consider it after talking to their doctors, and only 1 percent reported actually filling a prescription for it. Fully 80 percent cited worries about side effects.
    “When the numbers were laid out for them in a way they could clearly understand, they weren’t interested in taking tamoxifen,” said Angela Fagerlin, associate professor of internal medicine at the University of Michigan and the lead author of the study, published in the journal Breast Cancer Research and Treatment. “They didn’t think the benefits of tamoxifen outweighed the risks.”
    Dr. Fagerlin has also conducted a study of women and raloxifene, which has been shown to significantly reduce breast cancer risk but with fewer side effects. Although the data has not yet been published, she said the findings appeared to be similar.
    Some women say they simply do not want to take a pill every day. In fact, though, most consumers are willing to take pills for prevention if they are convinced of the benefits. Millions of women take daily birth control pills, for example, and few people seem reluctant to take multivitamins — or aspirin to prevent heart attacks.
    But in the case of anticancer drugs, a phenomenon known as omission bias appears to be at work. People tend to worry more about a low risk of harm from something they do (like taking a pill or a vaccine) than about a higher risk of harm from doing nothing.
    In a seminal 1994 study of vaccination trends for whooping cough, researchers from the University of Pennsylvania found that parents gave far more credence to hypothetical concerns about side effects than about the very real danger of an unvaccinated child’s becoming severely ill with the disease.
    “I think this involves complex human psychology,” said Dr. Larry Norton, deputy physician in chief for breast cancer programs at Memorial Sloan-Kettering Cancer Center in New York. “A number of studies have shown that people are more concerned about losing something than they are about gaining something.”
    Dr. Norton said he was optimistic that new research into aromatase inhibitors, which lower the amount of estrogen in the body, would lead to new prevention options with less bothersome side effects. Meanwhile, he said, it was unlikely that large numbers of healthy women would ever be persuaded to take tamoxifen as a breast cancer prevention drug.
    “It’s not a matter of being right or wrong; it’s about what’s happening now,” he said. “The drug has been available for a long period of time, and the public is as educated as it can be, and we still haven’t seen a great use of the drug.”
    Tamoxifen was discovered by ICI Pharmaceuticals[2] (now AstraZeneca) and is sold under the trade names Nolvadex, Istubal, and Valodex. However, the drug, even before its patent expiration, was and still is widely referred to by its generic name "tamoxifen
  • New Flower
    New Flower Member Posts: 4,294
    Options
    Sorry for your friend
    She can visit uterine board at CSN. We have discussed this issue earlier so she can search on Tamoxifen and will find old posts.She can check this out:http://csn.cancer.org/node/181214. I have been on Tamoxifen myself for 11 months. I have discussed this issue with my gynecologist, he believes it is very rare event (1%), especially if patient stays on Tamoxifen for less than 5 years.Did they do endometrial biopsy for her? Sorry
    New Flower
  • New Flower
    New Flower Member Posts: 4,294
    Options

    Tamoxifen -- NYT article
    Roseann,

    I truly hope your friend has a "normal" case of uterine cancer, which is highly treatable.

    Below is a copy of an article in the New York Times from December. It was written, apparently, to chastize women who are healthy, but at high risk of developing breast cancer, and who refuse to take Tamoxifen to prevent breast cancer. About half way down, it sumarize the risk to healthy women from taking Tamoxifen.

    It says that among a representative group of 1,000 healthy 52 year-old women, 19 could be expected to get breast cancer, but 9 will avoid it if they take the drug. Sounds good. BUT here is the fine print. In order to prevent 9 cases of breast cancer:

    "the drug would be expected to cause"
    - 21 additional cases of endometrial cancer (common endometrial cancer is normally survived by 90%+, but from other research I've read, up to 20% of endometrial cancer caused by Tamoxifen can be a VERY deadly form of the cancer.)
    - 21 would develop blood clots (beyond the normal number)
    - 31 would develop cataracts (beyond the normal numbner)
    - 12 would develop sexual problems (beyond the normal number)
    - And 120 will develop hot flashes, changes in vaginal discharge or irregular periods (beyond the women who would normally be expected to develop all of these symptoms during menopause).


    December 14, 2009
    When Lowering the Odds of Cancer Isn’t Enough
    By TARA PARKER-POPE
    If someone invented a pill to cut a cancer risk in half, would you take it?
    Who wouldn’t?
    Apparently the answer is millions of women — people like Cindy Birkhold of Sarasota, Fla.
    The pill is tamoxifen, and Ms. Birkhold, now 52, was considered an ideal candidate for it: she tested positive for a breast cancer gene, her mother had ovarian cancer, and her aunt had breast cancer. Yet rather than take tamoxifen, she opted for surgery to remove her breasts and ovaries.
    “I even went so far as to get the prescription” for tamoxifen, she said. “But then I started reading more and decided this isn’t the way I’m going to go. I don’t like to take drugs.”
    Such decisions have become a topic of growing concern among doctors and researchers, who are increasingly focused on treatments to prevent cancer in high-risk patients.
    While many kinds of cancer are resistant to such treatments, tamoxifen is well documented to prevent breast cancer in many women at high risk for it. Now another drug, raloxifene, has been shown to have a similar effect, and a class of drugs called aromatase inhibitors may also be useful. And for men, finasteride has been shown to lower the risk of prostate cancer.
    But none of these new chemoprevention drugs will do any good if patients do not use them. University of Michigan set out to learn why they don’t.
    A woman is considered to be at high risk for breast cancer if she is over 40 and has a mother, sister or daughter with the disease, or has a history of atypical cells on a breast biopsy. Tamoxifen lowers a woman’s risk for developing breast cancer by interfering with the activity of estrogen in the body.
    The researchers looked at 632 women whose five-year risk for breast cancer made them candidates for the drug. To find out whether the problem was one of information, the scientists created a detailed Internet-based decision tool tailored to each woman’s individual risk.
    For instance, a 52-year-old woman who had her first child after age 30, and whose own mother had breast cancer, has a five-year risk of 1.9 percent, according to the Gail risk score, a widely accepted statistical model. That means among 1,000 similar women, 19 would be expected to develop breast cancer over the next five years.
    If those women all took tamoxifen, however, 9 of those women would avoid breast cancer — and, as a bonus, 13 would avoid broken bones from osteoporosis.
    It is true that tamoxifen can have side effects, some of them serious. Among 1,000 similar 52-year-old women, the drug would be expected to cause 21 additional cases of endometrial cancer, a cancer of the uterine lining that is typically treatable when caught early. An additional 21 would develop blood clots, 31 would develop cataracts and 12 would develop sexual problems. And while more than half of the 1,000 women would naturally develop hormonal symptoms like hot flashes, changes in vaginal discharge or irregular periods, tamoxifen would cause those symptoms in about an additional 120 women.
    While these risks are not to be taken lightly, neither are the risks of failing to use tamoxifen; its benefits for breast and bone are substantial. Yet virtually every woman in the study said she would be unlikely to take the drug. Just 6 percent said they would consider it after talking to their doctors, and only 1 percent reported actually filling a prescription for it. Fully 80 percent cited worries about side effects.
    “When the numbers were laid out for them in a way they could clearly understand, they weren’t interested in taking tamoxifen,” said Angela Fagerlin, associate professor of internal medicine at the University of Michigan and the lead author of the study, published in the journal Breast Cancer Research and Treatment. “They didn’t think the benefits of tamoxifen outweighed the risks.”
    Dr. Fagerlin has also conducted a study of women and raloxifene, which has been shown to significantly reduce breast cancer risk but with fewer side effects. Although the data has not yet been published, she said the findings appeared to be similar.
    Some women say they simply do not want to take a pill every day. In fact, though, most consumers are willing to take pills for prevention if they are convinced of the benefits. Millions of women take daily birth control pills, for example, and few people seem reluctant to take multivitamins — or aspirin to prevent heart attacks.
    But in the case of anticancer drugs, a phenomenon known as omission bias appears to be at work. People tend to worry more about a low risk of harm from something they do (like taking a pill or a vaccine) than about a higher risk of harm from doing nothing.
    In a seminal 1994 study of vaccination trends for whooping cough, researchers from the University of Pennsylvania found that parents gave far more credence to hypothetical concerns about side effects than about the very real danger of an unvaccinated child’s becoming severely ill with the disease.
    “I think this involves complex human psychology,” said Dr. Larry Norton, deputy physician in chief for breast cancer programs at Memorial Sloan-Kettering Cancer Center in New York. “A number of studies have shown that people are more concerned about losing something than they are about gaining something.”
    Dr. Norton said he was optimistic that new research into aromatase inhibitors, which lower the amount of estrogen in the body, would lead to new prevention options with less bothersome side effects. Meanwhile, he said, it was unlikely that large numbers of healthy women would ever be persuaded to take tamoxifen as a breast cancer prevention drug.
    “It’s not a matter of being right or wrong; it’s about what’s happening now,” he said. “The drug has been available for a long period of time, and the public is as educated as it can be, and we still haven’t seen a great use of the drug.”
    Tamoxifen was discovered by ICI Pharmaceuticals[2] (now AstraZeneca) and is sold under the trade names Nolvadex, Istubal, and Valodex. However, the drug, even before its patent expiration, was and still is widely referred to by its generic name "tamoxifen

    Hi Sunny girl
    I read this article in December. I think The journalist, TARA PARKER-POPE is very irresponsible person who has misinterpreted actual scientific facts and statistics.Patients should not make their decisions based on the article from New York Times.
  • sunny_girl
    sunny_girl Member Posts: 33
    Options

    Hi Sunny girl
    I read this article in December. I think The journalist, TARA PARKER-POPE is very irresponsible person who has misinterpreted actual scientific facts and statistics.Patients should not make their decisions based on the article from New York Times.

    National Institute of Cancer
    I couldn't agree more that the article seems irresponsible. However, I think it does lay out the expected risks of taking Tamoxifen in very easy to understand language. Below is what the National Cancer Institute says about Tamoxifen and uterine cancer. The numbers appear to be the same as the NYT article, but it is harder to parse the total number of expected cases because it says "cases per year," but not how many years. Uterine sarcoma is the much more deadly form of endometrial cancer, and the NCI points out that cases are increased in women taking Tamoxifen.

    From the National Cancer Institute: http://www.cancer.gov/cancertopics/factsheet/Therapy/tamoxifen

    6. Does tamoxifen cause cancers of the uterus?
    Tamoxifen increases the risk of two types of cancer that can develop in the uterus: endometrial cancer, which arises in the lining of the uterus, and uterine sarcoma, which arises in the muscular wall of the uterus. Like all cancers, endometrial cancer and uterine sarcoma are potentially life-threatening. Women who have had a hysterectomy (surgery to remove the uterus) and are taking tamoxifen are not at increased risk for these cancers.

    Endometrial Cancer
    Studies have found the risk of developing endometrial cancer to be about 2 cases per 1,000 women taking tamoxifen each year compared with 1 case per 1,000 women taking placebo (1, 2). Most of the endometrial cancers that have occurred in women taking tamoxifen have been found in the early stages, and treatment has usually been effective. However, for some breast cancer patients who developed endometrial cancer while taking tamoxifen, the disease was life-threatening.

    Uterine Sarcoma
    Studies have found the risk of developing uterine sarcoma to be slightly higher in women taking tamoxifen compared with women taking placebo. However, it was less than 1 case per 1,000 women per year in both groups (1, 2). Research to date indicates that uterine sarcoma is more likely to be diagnosed at later stages than endometrial cancer, and may therefore be harder to control and more life-threatening than endometrial cancer.

    References:
    1. Fisher B, Costantino JP, Wickerham DL, et al. Tamoxifen for prevention of breast cancer: Report of the National Surgical Adjuvant Breast and Bowel Project P-1 Study. Journal of the National Cancer Institute 1998; 90(18):1371–1388.

    2. Fisher B, Costantino JP, Wickerham DL, et al. Tamoxifen for the prevention of breast cancer: Current status of the National Surgical Adjuvant Breast and Bowel Project P-1 Study. Journal of the National Cancer Institute 2005; 97(22):1652–1662.
  • jnl
    jnl Member Posts: 3,869 Member
    Options

    Sorry for your friend
    She can visit uterine board at CSN. We have discussed this issue earlier so she can search on Tamoxifen and will find old posts.She can check this out:http://csn.cancer.org/node/181214. I have been on Tamoxifen myself for 11 months. I have discussed this issue with my gynecologist, he believes it is very rare event (1%), especially if patient stays on Tamoxifen for less than 5 years.Did they do endometrial biopsy for her? Sorry
    New Flower

    Uterine cancer is one of the
    Uterine cancer is one of the side effects of tamoxifen. However, they say it isn't common. I am so sorry that your friend has this. Wishing her good luck!

    Hugs, Leeza
  • mimivac
    mimivac Member Posts: 2,143 Member
    Options
    I'm sorry for your friend
    It happens, but is not common. Thankfully, uterine cancer is very often readily treatable and I hope they can take care of this as quickly as possible.

    Mimi
  • crselby
    crselby Member Posts: 441 Member
    Options
    treatable how?
    My onc also said a side effect of Tamoxifen can be uterine cancer in a small number of women. But, he said, it is also easily treatable. Ok, ladies, how is uterine cancer treatable? By removing my uterus from my body?
    ~~Connie~~
  • Marcia527
    Marcia527 Member Posts: 2,729
    Options
    crselby said:

    treatable how?
    My onc also said a side effect of Tamoxifen can be uterine cancer in a small number of women. But, he said, it is also easily treatable. Ok, ladies, how is uterine cancer treatable? By removing my uterus from my body?
    ~~Connie~~

    Yes. My sister had uterine
    Yes. My sister had uterine cancer. It had not spread to the nodes.
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    Options
    Marcia527 said:

    Yes. My sister had uterine
    Yes. My sister had uterine cancer. It had not spread to the nodes.

    There are always risks...
    ... with everything. Even aspirin. Each of us makes our own individual decisions, every step of the way.

    For me - I've always weighed the risks, one against the other.
  • roseann4
    roseann4 Member Posts: 992 Member
    Options

    There are always risks...
    ... with everything. Even aspirin. Each of us makes our own individual decisions, every step of the way.

    For me - I've always weighed the risks, one against the other.

    Thanks!
    Thanks for all your responses. Her doc wanted to see her immediately which may indicate a concern that it is related to the tamoxifen. If so, it sounds like it could be very aggressive.

    Roseann
  • jnl
    jnl Member Posts: 3,869 Member
    Options
    roseann4 said:

    Thanks!
    Thanks for all your responses. Her doc wanted to see her immediately which may indicate a concern that it is related to the tamoxifen. If so, it sounds like it could be very aggressive.

    Roseann

    Keep us updated on her
    Keep us updated on her Roseann. Praying for her!

    Leeza
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    Options
    mimivac said:

    I'm sorry for your friend
    It happens, but is not common. Thankfully, uterine cancer is very often readily treatable and I hope they can take care of this as quickly as possible.

    Mimi

    Sending prayers for your
    Sending prayers for your friend and you!