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"Tamoxifen Road" - Support and Encouragement

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  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Another night with with the puppies. Just too much activity for them. Also, too hot upstairs. Our attic is hotter than a sauna. Time to put a fan up there to pull the hot air out.

    What is every doing this week? Other than getting hot from the Tamoxifen, I am feeling fabulous

  • Why2015
    Why2015 Member Posts: 14
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    Make sure you go to GYN when on Tomoxifen. It can cause uterine hyperplasia. I marveled that none of the doctors, except for my GYN, filled me in on all the things that can happen on Tomoxifen. Also no one told me that I shouldn't have grapefruit. Also, worry about all the soy lethicin in foods. Good to see you have a low Onco type score. Best of luck to you

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    There are concerns with every medication, and you should work with your MO to stay current on health issues. Eating soy is not recommended for hormone positive patients. My diet is soy free, dairy free, and gluten free. Why2015, how long have you been on Tamoxifen

  • Spoonie77
    Spoonie77 Member Posts: 532
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    Will eating soy increase my risk of breast cancer? (Mayo Clinic 2018)

    "Studies show that a lifelong diet rich in soy foods reduces the risk of breast cancer in women. This protective effect is less dramatic for women who eat less soy or who start eating soy later in life. Soy contains protein, isoflavones and fiber, all of which provide health benefits.

    It was once thought that soy foods increase the risk of breast cancer. However, eating a moderate amount of soy foods does not increase risk of breast cancer — or other types of cancer. A moderate amount is one to two servings a day of whole-soy foods, such as tofu, soy milk and edamame.

    So where did the idea come from that soy increases breast cancer risk? Isoflavones, which are found in soy, are plant estrogens. High levels of estrogen have been linked to an increased risk of breast cancer. However, food sources of soy don't contain high enough levels of isoflavones to increase the risk of breast cancer.

    Soy or isoflavone supplements, on the other hand, generally contain higher levels of isoflavones. Some studies have suggested a link between soy or isoflavone supplements and an increased risk of breast cancer in women who have a family or personal history of breast cancer or thyroid problems.

    Talk with your doctor or dietitian before taking supplements."


    Is Soy Safe For Cancer Patients? (Dana Farber Cancer Institute 2018)

    "Eating soy foods like tofu, edamame and soy milk has been linked to reduced risk of certain cancers including breast cancer, prostate cancer and gastric cancer. Many patients worry, however, that eating soy might be harmful if they have estrogen-receptor positive breast cancer. Let's clear up confusion about the safety of eating soy foods as it relates to cancer risk.

    Soy contains something called phytoestrogens, which are the plant version of estrogen. Here are 3 important things to know:

    • Phytoestrogens are structurally different and significantly weaker than human estrogen.
    • Phytoestrogens do not turn into estrogen when you eat them.
    • Moderate intake of soy, in food form, does not increase cancer growth.

    The scientific research to date suggests:

    Prostate and breast cancer rates are lower in Asian countries where soy foods are a regular part of an overall healthy diet.

    Soy in natural food form such as tofu, edamame and soy milk is safe for consumption, even for people with a cancer diagnosis.

    Cancer patients do not need to eliminate all sources of soy food from their diet.

    For more detail on specific categories of soy products, please see this excerpt previously published in the Cancer Nutrition Consortium Newsletter."


    For Breast Cancer Survivors, Eating Soy Tied To A Longevity Boost

    March 7, 2017

    https://www.npr.org/sections/thesalt/2017/03/07/519030514/eating-soy-has-benefits-for-breast-cancer-survivors-study-finds



    The Top 5 Soy Myths (Marji McCullough, ScD, RD)

    "Myth #2. Eating soy increases breast cancer risk. Soybeans and soy products are the richest source of isoflavones in the human diet. Isoflavones are phytoestrogens, or plant chemicals capable of exerting estrogenlike effects.

    Most of the concerns surrounding soyfoods have to do with their impact on the many bodily systems influenced by estrogen. Breast cancer, especially estrogen receptor–positive breast cancer, is a primary concern.

    According to Marji McCullough, ScD, RD, strategic director of nutritional epidemiology for the American Cancer Society, epidemiologic studies that followed large populations of healthy women for many years either have shown no association between soy and breast cancer or a protective association from eating soy. Even breast cancer survivors may not need to worry. Three studies looking at women's eating habits and other lifestyle factors after breast cancer found that, in the combined total of 9,000 breast cancer survivors studied, eating soy actually lowered the risk of breast cancer recurrence, even in women with estrogen receptor–positive tumors (although less so), and regardless of whether they were taking tamoxifen.4

    "I want to make sure women, including those with a history of breast cancer, know it's OK to eat these foods," McCullough says. "However, to find out for sure whether we should specifically recommend soyfoods to breast cancer survivors, researchers would need to replicate these findings, ideally through a controlled study. At the very least, the evidence from the studies in women reassures us that moderate consumption of soyfoods is likely to be safe." However, information on the safety of soy supplements is inconclusive, and they shouldn't be recommended at this time.4

    McCullough offers an explanation why soy's phytoestrogens may not be the powerful cancer causers they were once thought to be. "While isoflavones may act like estrogen, they also have antiestrogen properties," she explains. "That is, they can block the more potent natural estrogens from binding to the estrogen receptor. In addition, they stop the formation of estrogens in fat tissue and stimulate production of a protein that binds estrogen in the blood, making it less able to bind to the receptor. They also have antioxidant and anti-inflammatory properties and may work in other ways to reduce cancer growth.'"


    Straight Talk ABout Soy (Harvard 2018)

    "The Takeaway: Soy is a unique food that is widely studied for its estrogenic and anti-estrogenic effects on the body. Studies may seem to present conflicting conclusions about soy, but this is largely due to the wide variation in how soy is studied. Results of recent population studies suggest that soy has either a beneficial or neutral effect on various health conditions. Soy is a nutrient-dense source of protein that can safely be consumed several times a week, and is likely to provide health benefits—especially when eaten as an alternative to red and processed meat.

    "Part of the uncertainty is due to the intricacy of soy's effects on the body. Soy is unique in that it contains a high concentration of isoflavones, a type of plant estrogen (phytoestrogen) that is similar in function to human estrogen but with much weaker effects. Soy isoflavones can bind to estrogen receptors in the body and cause either weak estrogenic or anti-estrogenic activity. The two major soy isoflavones are called genistein and daidzein. Soy isoflavones and soy protein appear to have different actions in the body based on the following factors:

    • Type of study. Is it being examined in a study with animals or humans? Soy may be metabolized differently in animals, so the outcomes of animal studies may not be applicable to humans.
    • Ethnicity. Soy may be broken down and used by the body differently in different ethnic groups, which is why individuals from some countries who eat a lot of soy appear to benefit from the food.
    • Hormone levels. Because soy can have estrogenic properties, its effects can vary depending on the existing level of hormones in the body. Premenopausal women have much higher circulating levels of estradiol—the major form of estrogen in the human body—than postmenopausal women. In this context soy may act like an anti-estrogen, but among postmenopausal women soy may act more like an estrogen. Also, women with breast cancer are classified into hormone type—either hormone positive (ER+/PR+) or hormone negative (ER-/PR-) breast cancer—and these tumors respond differently to estrogens
    • Type of soy. What type of soy is being studied: Whole soy foods such as tofu and soybeans, processed versions like soy protein powders, or soy-based veggie burgers? Fermented or unfermented soy foods? If supplements are used, do they contain isoflavones or soy protein?

    Thus, there are many factors that make it difficult to construct blanket statements about the health effects of soy. "


    SOY (Susan G. Koman)

    Breast cancer: The effects of soy in people with breast cancer are unclear. Some research finds that soy might "feed" certain breast cancers because it can act like estrogen. Other studies have found that soy seems to protect against breast cancer. The difference in effects might have something to do with the amount taken. Because there isn't enough reliable information about the effects of soy in women with breast cancer, a history of breast cancer, or a family history of breast cancer, it's best to avoid using soy supplements until more is known.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    I do not recommend soy. But, always check with your MO.

    It is hot hot hot today. What is the temp where you are at?

  • 41619Courage
    41619Courage Member Posts: 12
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    Michelle - We added a return near the ceiling in our attic and we're able to regulate the temp. It is hot, hot, hot here in MI as well.

    I keep my air 77 when the husband is out of town.

    See pic of Charlie Girl - I think she's trying to tell me something. hahaha!

    Not purposely eating soy but will watch out for it going forward.

    image

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    @416 Tomorrow it is going to be 95 degrees in Illinois. Your cat said it is hot.

  • gb2115
    gb2115 Member Posts: 553
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    I wouldn't worry about soy lecithin, it only has trace amounts of soy in it. You will drive yourself crazy obsessing over ingredient labels unnecessarily. I am an obsessive worrier and would definitely not worry about this one.




  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Gb, I know soy is now in everything. Soy protein is probably the worst offender. I had a dietitian screaming in my face, about soy. I was already aware of the estrogenic effects, but I don’t have any ovaries.

    Shocked

  • Spoonie77
    Spoonie77 Member Posts: 532
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    For all concerned about Soy, please see this BCO article and those from Oncology Nutrition and The American Cancer Institute. The main issue concerns SOY SUPPLEMENTS vs SOY FOOD. Again, we are all different and if concerned, please ask your Doctor or an up to date Dietitian. :)


    "[M]any doctors recommend that women who take hormonal therapy or who have estrogen-receptor-positive breast cancer avoid soy supplements because they contain high concentrations of isoflavones. But in general, it's fine to eat moderate amounts of soy foods as part of a balanced diet. One to 3 servings of soy a day (a serving is about a half cup) is similar to an average Japanese woman's daily soy intake. If you are taking hormonal therapy to fight off a hormone-receptor-positive breast cancer, and you are concerned about any phytoestrogen effects, ask your doctor or registered dietitian about how much soy you can eat."

    https://www.breastcancer.org/tips/nutrition/reduce_risk/foods/so


    What about cancer survivors? by American Institute For Cancer Research


    "Breast Cancer Survivors: Overall, the seven recent epidemiologic studies examining soy consumption among breast cancer survivors – in six population studies and one combined analyis – show that consuming moderate amounts of soy foods does not increase a woman's risk for poorer outcomes. The amounts classified as moderate are comparable to what Asian women consume. Some of the studies point to a potential benefit among women receiving certain treatments or with certain tumor characteristics.

    Among Asians, postmenopausal women who ate the most soy foods – about two to three servings a day –had the lowest risk of recurrence or death compared to women who ate the least, less than a few serving a week. These findings were also seen in studies among predominantly Caucasian women who consumed soy at levels comparable to the average Asian.

    In the largest study to date, a pooled analysis of studies that included almost 10,000 breast cancer patients, consuming at least 10 milligrams isoflavones (mg) daily linked to a 25 percent decrease in breast cancer recurrence. This effect was seen among both women from the United States and Asia, and was most evident in survivors of ER-negative cancer and those with ER-positive cancer taking tamoxifen."


    Soy and Breast Cancer by the Academy of Nutrition and Dietetics: Oncology Nutrition


    "Question:

    Are soy foods safe for breast cancer survivors, including women who were treated for estrogen receptor positive breast cancer?

    Answer:

    Summary: The current consensus among health experts who study soy is that breast cancer survivors can safely eat these foods. Emerging research suggests that soy foods may decrease the likelihood of breast cancer recurrence in women with a history of the disease.

    Most health experts agree that the evidence is not strong enough to recommend that all women with a history of breast cancer eat more soy. However, soy foods do appear to be safe, and possibly beneficial for female breast cancer survivors.

    Soy Confusion

    Confusion about soy arises from the term "phytoestrogens." Some soy nutrients—the isoflavones—have chemical structures that look a bit like the estrogen found in a woman's body. This is where the term phytoestrogen originated. However, phytoestrogens are not the same thing as female estrogens. Soy foods do not contain estrogen.

    Recent Evidence

    Several large, human studies—in which thousands of women have been followed for many years—consistently show that compared with women who do not eat soy, women who regularly eat soy have lower breast cancer risk. Some of these studies also suggest that breast cancer survivors who consume soy foods have a lower risk of breast cancer recurrence compared with survivors who avoid soy.

    These studies have been conducted in both Asian and US populations. This is important because soy has long been a part of many Asian cuisines, but it is a relatively new introduction to the American diet.

    These studies are observational. This means researchers collect diet information from women, then follow them for many years to see who gets breast cancer. In an observational study, it is always possible that the true connection with better breast health is not soy, but something else that is related to eating soy.

    For example, women who eat soy foods also may eat less fried food and more vegetables. They may exercise more and maintain a healthier body weight. Any one of these other things could be the reason why soy-eating women have lower breast cancer risk.

    This means observational studies can't conclusively prove that soy protects against breast cancer. However, these studies are reassuring in affirming that soy foods do not increase breast cancer risk. They point toward a protective effect of soy on breast health, regardless of other lifestyle and diet choices.

    Food First

    Soy foods are a healthy option, while soy dietary supplements may not be. The research on soy and breast health has looked at soy foods, not dietary supplements. If you require extra calories during cancer treatment from a medical food supplement, the soy protein in this type of product is not a problem. However, soy pills and isoflavone-enriched powders should be avoided.

    If you're a woman concerned about breast health and you like soy, stick to healthy, whole soy foods, such as tofu, tempeh, soymilk, and edamame. The occasional soy protein bar or snack food is fine, but as with all plant foods, less processed is better.

    Stop Soy Fear

    In the end, feel confident in whatever choice you make about soy foods. Eat these foods if you enjoy them, or skip them altogether if soy isn't to your liking.

    The original question and answer were generously donated by Diana Dyer, MS, RD a cancer survivor, registered dietitian, organic garlic farmer, and the author of "A Dietitian's Cancer Story: Information & Inspiration for Recovery & Healing from a 3-time Cancer Survivor.

    Question and Answer updated by Suzanne Dixon, MPH, MS, RD on behalf of the ON DPG

    References

    1. Caan BJ, Natarajan L, Parker B, Gold EB, Thomson C, Newman V, Rock CL, Pu M, Al-Delaimy W, Pierce JP. Soy food consumption and breast cancer prognosis. Cancer Epidemiol Biomarkers Prev. 2011;20:854-58.
    2. Guha N, Kwan ML, Quesenberry CP Jr, Weltzien EK, Castillo AL, Caan BJ. Soy isoflavones and risk of cancer recurrence in a cohort of breast cancer survivors: the Life After Cancer Epidemiology study. Breast Cancer Res Treat. 2009;118:395-405.
    3. Kang X, Zhang Q, Wang S, Huang X, Jin S. Effect of soy isoflavones on breast cancer recurrence and death for patients receiving adjuvant endocrine therapy. CMAJ. 2010;182:1857-62.
    4. Dong JY, Qin LQ. Soy isoflavones consumption and risk of breast cancer incidence or recurrence: a meta-analysis of prospective studies. Breast Cancer Res Treat. 2011;125:315-23.
    5. ACS Guidelines on Nutrition and Physical Activity for Cancer Prevention.
    6. American Institute for Cancer Research, Soy Update."
  • vargadoll
    vargadoll Member Posts: 1,942
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    Spoonie77- I couldn't agree with you more! That article is very informative and has current up to date data. It's so important to consider your sources when gathering information! Thanks you for sharing the fact base information!

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Again, work with your own MO regarding soy intake. There are a lot of opinions, about a lot of things, so don’t take anybody’s word for anything. Always work with your own Medical Oncologist, as they know you the best.

    Love to my girls!!!!

  • gb2115
    gb2115 Member Posts: 553
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    It's true there multiple opinions...my surgeon said avoid soy and MO said not to worry about it. In general my MO seems to be more up to date, so I tend to take what the surgeon says with a grain of salt. I eat it if I feel like it, part of normal eating.


  • cassiecanada
    cassiecanada Member Posts: 101
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    ame

  • vargadoll
    vargadoll Member Posts: 1,942
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    I agree 100% not to take "just anyone's " information or opinion. That's why it's so nice to have members like Spoonie who share the link and keep us connected to update information on BCO.😆

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Your MO is the most up to date on medical issues involving cancer. It is best to refer to them.

    @Spoonie, how are you doing on Tamoxifen? It is great that you could still take it. What dosage are you on?

    Per the MODERATORS: Remember, this is a forum for those actually taking Tamoxifen.

  • Spoonie77
    Spoonie77 Member Posts: 532
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    As I have previously shared, I completed my treatment with Tamoxifen. It was not a viable option for me.

    It's a viable and wonderful option for many. :)

    My posts are not debating or discussing anything about Tamoxifen just supporting others on their own journeys and offering current studies on Soy since it was brought up and this was part of my journey while I was on Tamoxifen.


    Per OP: "For those that are taking Tamoxifen, considering taking Tamoxifen and need support, and for those that have completed Tamoxifen therapy.....Please share your ideas, questions, and personal journey on the Tamoxifen Raod. We can help each other succeed."

    image



    Per Moderators: "It appears to us that the intent of this topic was to provide a supportive environment for those who have decided to take Tamoxifen, and are on it, not to debate whether or not to take Tamoxifen." Agreed. :)

    image

  • salamandra
    salamandra Member Posts: 745
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    Thank you for all the great links Spoonie.

    My MO did not speak to me one way or the other about soy. I think this is because she's not concerned one way or the other, because there isn't evidence that would rise to the level of impacting care about its harmfulness or benefits. My MO is on the conservative side - encouraged me to take out my hormonal IUD, even though risk is not fully established, so I trust she would have brought up any common foods known to be problematic.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    If you are hormone positive, take advice from your own Oncologist. Information that your rely upon to make medical decisions, should come from your own doctor.

  • runor
    runor Member Posts: 1,613
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    I agree with Salamandra. I think Spoonie is providing very helpful and current information. I appreciate reading it. Thank you Spoonie for the info. At whom is this veiled snub aimed?

  • cassiecanada
    cassiecanada Member Posts: 101
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    Thanks Spoonie for your input- your
    experience with tamoxifen has
    been so helpful to so many




  • vargadoll
    vargadoll Member Posts: 1,942
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    Spoonie- I do appreciate your support! I don't care were you are on your Tamoxifen journey! After all the title is "Tamoxifen Road" every road ends somewhere right? You have only posted facted based information (mainly from BCO). I am so glad I found you here!

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    To all Tamoxifen users, get your information from you own Oncologist. This is a daily living thread for current Tamoxifen users to enjoy and have companionship on their journey.

    How are all my dog lovers today? The guilt face at night night time really tugs at my heart strings!!!

    image

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  • 41619Courage
    41619Courage Member Posts: 12
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    @Michelle - Gearing up for the humidity that has arrived much too early. I once read that it's best to sleep on white sheets in the warmer months; you'll stay cooler. Tested the theory a few years ago when I did not have air conditioning and found it to be true. May help those with night sweats as well.

    That face! I get the "isn't your job to play with us all day" face(s) whenever I leave the house. After having many aloof felines, I'd always wanted a "playful cat". Be careful what you wish for, you may get it five fold. hahaha!

    Have a wonderful and SAFE 4th to everyone in the U.S!

  • ucfknights
    ucfknights Member Posts: 91
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    hi! My mom finishes taxol July 23rd then mastectomy sometime in August. When does hormonatherapy begin after chemo?

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    ucfknights, It really depends on whether or not she is having radiation. It could take several months to start hormone therapy, depending on your mother's overall health. Her oncologist can provide a better timeline. Is she scheduled for radiation?

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Happy 4th of July!!!!! Son’s birthday today and then my niece has a concert. By fireworks, I will be home with my puppies

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    image

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    On what planet does a husband do this with a hedge trimmer? My Tamoxifen is making me want to retaliate. It took me 7 years to prune and shape my burning bush


  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Well, I took my pruning shears to my burning bush and cut a couple of feet off of it. Still not done. Need to cut more "woody" stems at the very top. Now that I am in the cutting mood, I am going to trim back my Chicago boxwoods and give them a good drenching. Then, I will bring in some mulch. Last night, spent some time on our skiing // fishing boat. Went back tonight for further wave therapy!!! Love being on the water. My puppies are trying to swat lightning bugs and eat them, and are amused by the locust sounds coming from our trees. When I was a child, the locust generally came in August. It seems we are a month early. My magnolia tree is also blooming again for the second time this season. Just crazy weather in Illinois.

    image

  • kdisbrow
    kdisbrow Member Posts: 1
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    Hey All! I am 37 and have been taking tamoxifen for about 2 years. I am wondering if anyone else has trouble losing weight? I have been consistent with eating good and exercising about 5 days a week with little results. Also, the vaginal dryness is terrible for me!!