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Tamoxifen for gals who have not had chemo

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Comments

  • KAK
    KAK Member Posts: 297
    edited November 2008

    Nena, the info on selenium is interesting!

    Ladies, here's some info  from the National Cancer Institute.  It helps to keep things in perspective.  The percentages here are very low:  "2 in 1000"  is 1/5 of a percent, for example, which is the risk of getting endometrial cancer while on tamoxifen.  Your risk for getting breast cancer again is on average somewhere between 10 & 30%, or 1 in 10 to 3 in 10, if you don't do some kind of hormonal therapy.

    "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.

    Abnormal vaginal bleeding and lower abdominal (pelvic) pain are symptoms of cancers of the uterus. Women who are taking tamoxifen should talk with their doctor about having regular pelvic examinations and should be checked promptly if they have any abnormal vaginal bleeding or pelvic pain between scheduled exams."

    The link to the tamoxifen info page is:  http://community.breastcancer.org/forum/78/topic/721880?page=4#idx_120

    Kathi

  • shelteringtree
    shelteringtree Member Posts: 23
    edited November 2008

    NenaH-  I saw my onc today and asked him about any food, juices, herbals etc. that interfere with Tamox. He said there is really nothing in particular that would cause a problem including grapefruit and pom juice. He did say that they like to know of any herbal substances you are taking in case something weird down the line happens; but as far as he is concerned there is really nothing specific that would cause problems. I hope that helps you out.

    Christina

  • AccidentalTourist
    AccidentalTourist Member Posts: 72
    edited November 2008

    Christina, thank you.  It is very kind of you to take the time out of your consultation to ask about this.

  • shelteringtree
    shelteringtree Member Posts: 23
    edited November 2008

    NenaH- You are very welcome!

    Christina

  • inspiewriter
    inspiewriter Member Posts: 54
    edited November 2008

    Hi!  I posted a new thread about Tamoxifen and spotting and then saw this thread. I have been on Tamx for 3 years now, no chemo or rads. I think my body's thermostat is forever ruined, but other than that no real side effects except achy feet. Which could be from age. LOL

    Today I had some spotting and got worried and decided to come talk to you all.  

  • inspiewriter
    inspiewriter Member Posts: 54
    edited November 2008

    If you go to www.drugdigest.org and check "interactions," it tells you grapefruit will interact with many drugs including Tmx. My dh is on certain drugs that interact, also, so we both avoid grapefruit.

    I have heard great things about pomegranite but it's always in such sugary drinks.

    Not sure what that abstract is saying about Selenium--- I take that because it's supposed to help with Lymphedema!!! 

  • shelteringtree
    shelteringtree Member Posts: 23
    edited November 2008

    inspiewriter- I checked out drugdigest.org and typed in tamox and checked for interactions and it said there are no interactions for the drug you selected.

    Christina 

  • prayrv
    prayrv Member Posts: 362
    edited November 2008

    Although I went to that website and achieved the same result, no interactions, there have been studies that link grapefruit to breast cancer - here are the links where I found this:

    http://blog.healthtalk/zimney/breast-cancer-and-grapefruit-not-always-a-good-combination/

    http://caonliine.amcancersoc.org/cgi/content/full/57/6/321?etoc

    The first one is a blog that cites his information from a Cancer online journal for clinicians.

    Hope this helps.

     Gentle Hugs,

    Trish

     'OF COURSE NOW I CAN'T GET THE LINKS TO WORK FROM HERE - TRY TO CUT AND PASTE"

  • inspiewriter
    inspiewriter Member Posts: 54
    edited November 2008

    If you are still menstruating every month, then your risk of endometrial cancer is practically zero.

    This is from this site's Tamoxifen page.

  • MarieKelly
    MarieKelly Member Posts: 33
    edited November 2008

    So menstuation protects against tamoxifen induced endometrial cancer ??Surprised That would be nice if it were really true, but I don't think it is. Read on -

    J Natl Cancer Inst. 2005 Mar 2;97(5):375-84. Related Articles, Links

    Click here to read Click here to read
    Tamoxifen treatment for breast cancer and risk of endometrial cancer: a case-control study.

    Swerdlow AJ, Jones ME; British Tamoxifen Second Cancer Study Group.

    Section of Epidemiology, Brookes Lawley Building, Institute of Cancer Research, Sutton, Surrey SM2 5NG, UK. anthony.swerdlow@icr.ac.uk

    BACKGROUND: Tamoxifen treatment of breast cancer is associated with an increased risk of endometrial cancer, but tamoxifen-related risks of endometrial cancer are unclear in premenopausal women, in long-term users of tamoxifen, and in women for whom several years have passed since ending treatment. We conducted a case-control study in Britain to investigate these risks. METHODS: We compared treatment information on 813 case patients who had endometrial cancer after their diagnosis for breast cancer and 1067 control patients who had breast cancer but not subsequent endometrial cancer. We assessed risk by conditional logistic regression analysis. All statistical tests were two-sided. RESULTS: Overall, tamoxifen treatment, compared with no treatment, was associated with an increased risk of endometrial cancer (odds ratio [OR] = 2.4; 95% confidence interval [CI] = 1.8 to 3.0). Risk increased statistically significantly (P(trend)<.001) with duration of treatment (for > or =5 years of treatment compared with no treatment, OR = 3.6, 95% CI = 2.6 to 4.8). As an indication of background levels of treatment, 16% of control patients received 5 years or more of treatment. Risk of endometrial cancer adjusted for treatment duration did not diminish in follow-up to at least 5 years after the last treatment ended.  Risk of endometrial cancer was not associated with the daily dose of tamoxifen and was comparable in pre- and postmenopausal women. Ever treatment with tamoxifen was associated with a much greater risk of Mullerian and mesodermal mixed endometrial tumors (OR = 13.5, 95% CI = 4.1 to 44.5) than of adenocarcinoma (OR = 2.1, 95% CI = 1.6 to 2.7) or clear cell and papillary serous tumors (OR = 3.1, 95% CI = 0.8 to 17.9). CONCLUSIONS: There is an increasing risk of endometrial cancer associated with longer tamoxifen treatment, extending well beyond 5 years. The increased risk of endometrial cancer associated with tamoxifen treatment should be considered clinically for both premenopausal and postmenopausal women during treatment and for at least 5 years after the last treatment.

    Publication Types: PMID: 15741574 [PubMed - indexed for MEDLINE]
  • inspiewriter
    inspiewriter Member Posts: 54
    edited November 2008

    I am not sure what that article is trying to say.

  • prayrv
    prayrv Member Posts: 362
    edited November 2008

    I was at first confused, but the conclusion says

    "CONCLUSIONS: There is an increasing risk of endometrial cancer associated with longer tamoxifen treatment, extending well beyond 5 years. The increased risk of endometrial cancer associated with tamoxifen treatment should be considered clinically for both premenopausal and postmenopausal women during treatment and for at least 5 years after the last treatment."

    That tells me there is an increased risk for endometrial cancer. 

    HOWEVER, I am monitored so closely because of taking tamox, I think my doctor will catch anything early.  IMHO

    Gentle Hugs,

    Trish

  • inspiewriter
    inspiewriter Member Posts: 54
    edited November 2008

    My onc told me I did not need to have the ultrasounds and other tests while on Tamx. From what I've read, I will know if I have any major problems kicking in. 

  • Kleenex
    Kleenex Member Posts: 310
    edited November 2008

    What have you heard or experienced about acne and Tamoxifen? One of the main reasons I was taking birth control pills for years was to keep my skin under control. In the four months I've been off of them, my skin has so far been fine, but I'm pretty sure I've got some residual hormone activity going on. I am to start Tamoxifen in the next week or so (when the mail order prescription arrives or after Thanksgiving, whichever comes last). Am I going to have acne with my hot flashes? Reducing the risk of breast cancer is obviously a higher priority than having clear skin, but who wants acne at 45?

  • prayrv
    prayrv Member Posts: 362
    edited November 2008

    Kleenex,

    Even though I took birth control pills for years, I still had acne, especially around my cycle.  Now that I'm tamox - hardly any!!!!!!!  I finally feel grown up!  I don't know if tamox is responsible or if it's because I'm no longer taking the birth control pill.  I am also 45 and in the DFW area.

    Hugs,

    Trish

  • Wndalina
    Wndalina Member Posts: 9
    edited November 2008

    OMG - I didn't even think about that part of it!  OY!  I just got Effexor prescribed now so when I start Tamox the end of the month I will have a head start - I think this whole BC diagnosis or age, or who knows what has had an effect on me and I hold high hopes that the 37.5 mg of this drug will calm and balance me.

     I finish rads on Friday - Happy thanksgiving to me!  Take care all - acne again? UGH!

  • bluegems
    bluegems Member Posts: 507
    edited November 2008

    Wendy,

    Congrats on finishing rads!

    Good call on getting the Effexor before Tamoxifen. It will also help with the slump that I and a few others went through a few weeks after finishing rads. I just got mine at my 4 week check on Tamoxifen. I'm hoping the low dose works as well, and kicks in much sooner than 4 weeks. I'm scheduled to get my face cut open to remove a basal cell mid-January and would like to be on as even a keel as possible before then! I've decided the old gal who could just buck up needed to be put down!

    I am thankful for my wonderful husband, beautiful children and granddaughter, supportive friends, and my health. For I know it could be much worse than this.

    Happy Thanksgiving!

  • awb
    awb Member Posts: 213
    edited November 2008

    I just finished my 5 years of tamox 6 weeks ago.  I was very fortunate to have tolerated it very well with relatively mild SEs (mild hot flashes, some insomnia and achiness--all annoying, but certainly manageable)---I wanted to do something proactive to try and prevent an invasive bc, and so far it has done it's job well.  I'll be going on Evista soon for further prevention of invasive bc--hopefully I will tolerate that as well as I have the tamox.  A side note: my mom took tamox many years ago for ILC and is now a survivor of 22 years without a recurrence!

    Anne

  • dmh2418
    dmh2418 Member Posts: 5
    edited November 2008

    I've been on tamo since the end of July.  I too just had a lump w rad.  I hate the tamo.  I'm tired all the time, gained weight even though I'm exercising, have joint pain, etc.  I'm seeing my oncologist next week and hope to quit.

  • ARsMommy
    ARsMommy Member Posts: 1
    edited November 2008

    I think I'm kinda middle of the road as far as Tamox side effects, so I'll share.  BTW, I'm 40 (nearly 41), definitely pre-meno, and single mast w/neither chemo or rads.  I've been on Tamoxifen since 7/1/08.  My SE's are:

    Somewhat irregular periods -- sometimes a week or so later than usual and lighter;

    I'm definitely warmer than usual...not exactly hot flashes, but my thermostat is higher and I get warm at night (not exactly "sweats" but it's noticeable and wakes me up sometimes);

    I don't think I'm quite as sharp mentally, but nothing horrible;

    Vaginal dryness...I recommend Replens for intimacy and KY Silk...which does interfere with my desire for sex, but since it's important to get back to as normal as possible with my DH, I'm giving it the old college try!

    Constipation.  However, if I take fiber powder regularly and make sure I drink enough water, it's manageable.

    Dry hair...my hair gal of 18 years even says it feels a little different texture-wise.  I find I need a little extra conditioner.

    Since none of these SE's are severe in my case, I'm sticking with the Tamox.  It took about 1.5 to 2 months before any of the symptoms kicked in.  I was so frightened of starting on it, but like so many have said, you can always stop if the SE's become unbearable.

    BTW, I've been taking melaton to help with sleep.

  • lynmas
    lynmas Member Posts: 1
    edited November 2008

    Hi everyone - First timer. I wanted to add my experience to your Tamoxifen discussion. I started Tamoxifen after radiation in September of 2005. Although I was only stage one and no chemo was indicated my cancer was mixed ductal and lobular. So the recommended course of action was surgery, radiation and Tamoxifen.  I was pre-menopausal so Tamoxifen was the only drug available. I took it until June of this year 2008.  The drug didn't affect my daily routine very much as I kept up my exercize and work schedule with little disruption. My problem was thickening uterine lining and ovarian cysts. I had multiple tests, biopsies, cat scans, ultrasounds and finally surgery. I had my ovaries removed in June along with a D&C. I now am in full menopause. As I hate taking any medications I was hoping to not have to take any other medication as my main estrogen producer has been removed but I my onc just started me on Aromasin.  Now I ache all over... If I didn't have the gyno problems I would gladly have stayed on the tamoxifen.   The daily side effects we much less.

  • awb
    awb Member Posts: 213
    edited November 2008

    lynmas-----I had a TAH/BSO (everything out) after large ruptured ovarian cysts 3.5 years ago, continued on tamoxifen, and just finished my 5 years about 6 weeks ago. My SEs from tamox were very mild before surgery; all SEs increased significantly after the surgery.  Onc felt that the SEs were more attributable to the loss of estrogen from losing the ovaries, not the tamox.

    Anne

  • KAK
    KAK Member Posts: 297
    edited December 2008

    Good for us who've just started tamoxifen to hear about you veterans!

  • AccidentalTourist
    AccidentalTourist Member Posts: 72
    edited December 2008

    I have just had my first CA15.3 blood test (had to do it abroad as not offered on NHS - British National Health System).  As far as I can tell I got good results back (9.43U/ml - normal range is between 0-25).  I am relieved but don't really know much about it.  Any information would be much appreciated.

    I don't seem to be able to search this site as any time I tried searching for a key word it came back negative although I remember reading up on it in the past.  Please advise.

    Best Nena

  • KAK
    KAK Member Posts: 297
    edited December 2008

    Nena, here's a link to some info on this site about blood tests:

    http://www.breastcancer.org/symptoms/testing/blood.jsp

    It seems that the reliability of these tests to predict cancer accurately or meaningfully is ambiguous, according to this page.  Having a low value doesn't necessarily mean you're out of the woods & having a high value doesn't mean you have a tumor or mets, so they say.

  • shelteringtree
    shelteringtree Member Posts: 23
    edited December 2008

    NenaH- I'm not sure why the search function isn't working for you. I typed in CA15.3 blood test and it came up with 43 results, maybe try again? I also typed the same thing into a web search and it came up with links to this site as well as other information. From what I read (and I'm no expert on blood tests) the test is only accurate about 75% of the time and is typically not indicated for women with early stage breast cancer who do not have a high risk of recurrance. HTH

    Christina

  • lisaalissa
    lisaalissa Member Posts: 34
    edited December 2008

    Nena, there are two different search engines on this website.  I wonder if you're just using the wrong one?  

    The first one is for the site, but not the forum (labeled "search BreastCancer.org site", you'll find this one at the very top of your screen in pale blue letters on a navy background).

    The second is for the forum, but not the rest of the site (you'll see this one only when you're on the forum, labeled "Search" in white letters on a raspberry-colored background and just above the "Go" button near the top of the page on the right).

    I tried a search using  "CA15.3" in both.  The first one, the site search, returned no results.  The second one, the forum search had over a hundred results ID'd.  Which is why I'm speculating that you simply need to try the forum search function (instead of the site search function).Smile

    HTH,

    LisaAlissa

    and one for the forum on that site. 

  • AccidentalTourist
    AccidentalTourist Member Posts: 72
    edited December 2008

    Thank you all.  LisaAlissa I typed CA15.3 in the second search engine you mention and the only posting that came up was my own.  Not sure why.  I wish that blood tests were more reliable so that we could do them all the time and catch any potential recurrence before it spreads.

    Tonight I read a thread on anger by a woman who have mets.  Several postings there were by women who started with early BC with no node involvment who have subsequently had recurrences. I feel for them and what they have to go through, I worry that it will happen to me, I am cross with myself for questioning agressive medical treatments but am at the same time scared of what they are doing to me.  I am so grateful to you all for being there.

  • KAK
    KAK Member Posts: 297
    edited December 2008

    Nena, recurrence risk is the stalker we all live with forever.  Hugs to you.  How's London these days?  Hate this bloody financial crisis business, eh??