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Tamoxifen and a bone density scan

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Dear all,

I'll be put on Tamoxifen in about 7 weeks and have been asked to get a bone density scan before starting this drug. I just got one a little over a year ago and don't want another one. I don't smoke, no heridity issues in my family for osteoporosis, I'm active, hike regularly, do yoga,  lift weights, and am closing the gap on finishing Taxol after DD AC tx.

My last bone density test was terrific--my doc said like a 25 year old--and I'm pre-menopausal at 53.

I'm a downwinder (exposed to above-ground nuclear fallout from above ground testing in the SW in 1962) exposed at age 4, which very well might have caused my BC, so I'm very sensitive to any unnecessary radiation.

Any thoughts? 

Claire

Comments

  • mawhinney
    mawhinney Member Posts: 14
    edited February 2012
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    Bone density scans use very low level xrays & are important in evaluating bone strength.Heredity, thin statue, low body fat, ethnicity, activity level etc all affect our bones. I eat right, exercise, do not smoke - do everything that is considered the right thing to do yet I developed osteoporsis. I have a yearly bone density test to see if there is any positive or negative change. The test helps to determine if I need bone strengthening medication.

  • elimar
    elimar Member Posts: 5,885
    edited February 2012
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    I am not sure if the two chemos you did would have had any impact on density; but, unless they do, I don't see why they cannot go by the scan you had done one year ago and use it as your baseline. That is what I would be asking the doctor.

  • claireinaz
    claireinaz Member Posts: 693
    edited February 2012
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    Even low level Xrays are unacceptable to me right now because of my exposure at age 4. I believe I've been radiated enough over my lifetime and much more than the normal person has. Susan Love says that those of us exposed to radioactive fallout before age 10 have a 20% higher risk for BC--I seem to be the example.   If it's just to evaluate because a doc is curious, I don't understand the need to have another one so soon.  The orders say "needed in order to begin hormonal therapy" but I also understood that tamoxifen actually has a bit of a positive influence on density anyway.

    Since I'm scheduled to have 6 weeks of radiation after chemo I don't want any unnecessary tests.

    So I'm still wondering if anyone else had to have a bone density test before they started tamoxifen.  If you did, was it because you had never had one before?  Or were you just due for a regular one anyway?

    Claire

  • claire_in_seattle
    claire_in_seattle Member Posts: 2,793
    edited February 2012
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    Hi Claire.....I would also question this one, especially since you were just fine prior to starting treatment.

    I think a high percentage of women do lose bone density during chemo, but that is from inactivity more than from treatment itself.  I am saying this based on the work of Anna Schwartz, where she showed a graph....~2% for women who exercised, ~8% among those who didn't.

    Another reason why I continued to lift weights and walk during chemo.

    However, I really don't think you need a bone density test at this point.  I had one last year, one year into AIs.  All my scores were normal.

    I would ask my oncologist for the rationale. Is there a protocol that requires this?? Perhaps some unique experience.

    Anyway, congrats on being almost done. I found the last weeks of Taxol were the worst. I had done the task in my head, so my mind was ahead of my body. They caught up a few weeks later.

    But the oddest experience. - The other Claire who is heading out for a ride in the Seattle sunshine

  • Golden01
    Golden01 Member Posts: 527
    edited February 2012
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    claireinaz: I had a bone density scan before starting Tamoxifen to help us decide between the Tamoxifen and an AI. Since my level had slipped into the osteopenia level, we went with Tamoxifen first and am working on my bones (Vit D, weight bearing exercise, etc.). Since you just had a scan a year ago and Tamoxifen doesn't have a negative impact on bones like the AI, I think your doctor should be amenable to using your results from your last scan. I had a little trouble tracking down the report from my last bone density scan, turns out it had been over 10 years ago so it was time for me to do one again and needed it to decide what drug might be best. I plan to do Tamoxifen for 2.5 years and then switch to an AI. My MO preferred the AI first but the bone density test decided it for me.

    I didn't grow up in Arizona but know a number of "downwinders". Your concerns are certainly valid. Any MO in AZ should "get it".

  • mom2twins34
    mom2twins34 Member Posts: 19
    edited February 2012
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    Hi Claire,

    I can understand why you wouldn't want to do this based on your history, especially after having had one last year... 

    I had my bone density scan just prior to starting tamoxifen, but I think it was just as much about seeing what the chemo had done to my bones as it was about doing it before beginning the tamoxifen.  But, it was also my first BD scan, so I think my MO was really looking to have a baseline scan.  

    My scan showed osteopenia, which was a bit disconcerting at 34.  That was almost a year ago and despite my less than stellar results, they haven't discussed plans to have a repeat scan at any point in the future.  And the scan hasn't really changed anything for me.  Other that putting me on a higher dose of Calcium + D, it hasn't impacted my meds or treatment AT ALL.  It has come into play during discussions about my upcoming hysterectomy/ooph, but only briefly since "we can't really do anything about it anyway since hrt isn't an option."  

    So, the scan was informative for me because it was my first--but had I just had one the year before & had I experienced the fallout exposure you had, I probably would have been opposed to doing it, too.  I would think that since you had a normal scan last year & because of your past radiation exposure it would be reasonable to not have another scan now just because you are starting tamoxifen.  I've also been told by one of my oncologists that the tamoxifen has a protective effect on the bones--it was my other MO who ordered the scan prior to starting the drug.  

    Best wishes...   

  • LtotheK
    LtotheK Member Posts: 487
    edited February 2012
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    I didn't have a baseline done before treatment (TC X 4), but I feel very sure the chemotherapy itself compounded with instant menopause pushed me into osteoporosis in the spine, osteopenia in the hip.  I was extremely active during treatment, walking about 4 miles a day.  I took three days off at each treatment, bcause I basically had what felt like low-grade flu.

    If I had it to do again, I'd have asked for a density test before treatment, and another right after treatment and used those as my baselines.  I understand the risks, and I, too, am trying my darndest to keep the tests to a minimum.  Right now, I'm going for another MRI contrast dye to diagnose what might be a hip infection.  I hate exposing myself to all these tests, and I hate being on drugs like Fosamax.  I really think after a while the compounded effect of all these things has to be carefully weighed with real risk.

    The scans told me one thing for sure:  I won't agree to an AI.

    Tamoxifen, by the way, only has a protective effect on the bones in post menopausal women.  In younger women, it can have the reverse effect.  Additionally, it appears it may have a withdrawl effect at the cessation of treatment, and so the bone loss outweighs the benefit maintained on the drug.

  • mom2twins34
    mom2twins34 Member Posts: 19
    edited February 2012
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    Yikes, thanks for the info on the reverse effect Tamoxifen can have on the bones, LtotheK!  I didn't know this...     :-( 
  • ALittleBitBritish
    ALittleBitBritish Member Posts: 415
    edited February 2012
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    I had osteopenia before the BC and have dexascans every year. Having one this week infact. I also asked for my vitamin D to be measured as my MO never suggested it. Got my results, I need more D and I am doubling my intake. I like to know what is going on in my body, as I maybe facing more surgery for tamoxifen SEs and need to decide upon SEs if having a hysterectomy or just an oopherectomy.

  • moderators
    moderators Posts: 8,285
    edited February 2012
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    ClaireinAZ, there are some interesting conversations about bone strength, testing, and medications in the Bone Health and Bone Loss forum here in the discussion boards. As well, the main Breastcancer.org site has information about bone density.

    Judith and the Mods

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 263
    edited February 2012
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    I would pass on the scan.  While I was taking tamoxifen a gynecologist suggested I do a bone density scan and I asked a friend at a major medical teaching facility if this was necessary.  She e-mailed around to the oncologists at her institution (some big names) who agreed with her that it was unnecessary.  Tanoxifen is not a major trigger for bone loss.

     AIs are something else entirely.  Now that I am on arimidex I do a bone density scan every year. 

  • claireinaz
    claireinaz Member Posts: 693
    edited February 2012
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    Thanks ladies for all the input.  In spite of my age I was premenopausal b/f tx and my onc. is forming my tx around that.  So tamoxifen it is.  My Vit D was tested in Nov and was fine and I'm still taking Vit D drops per naturopath/onc. directions. However,she said I'd probably go into meno because of chemo but there's no way to outwardly tell since I had a myomectomy in Dec '09 and the surgery damaged my endometrial lining enough so I don't bleed anymore. I was having regular periods till then.

    it was the nurse practioner that wrote the rx for the density scan, not my onc. who was out of town.  So I'll take this issue up with my doc, because I am going to pass on this.  Unnecessary testing and radiation is just that: unnecessary.  If the hippocratic oath is to do no harm, then asking a downwinder who was dx with breast cancer to get radiated (even a little counts, ladies, in my case) doesn't seem to be in keeping with that oath.

    Everyone in my family are downwinders (google  downwinders if you don't know who we are); my aunt just died of stomach cancer 2 months ago probably because of her exposure.  She got her compensation money paid by the govt; I filed my claim as well.  But even though the govt admitted they had put their citizens at risk, $50,000 didn't keep her alive. So you can see I'm very, very sensitive to any radiation at all.

    Thanks for the input!

    Claire

  • LtotheK
    LtotheK Member Posts: 487
    edited February 2012
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    Again, Tamoxifen absolutely can be a big trigger for bone loss in pre-menopausal women. 

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 263
    edited February 2012
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    L to K, this is true but the possibility is fairly small.  This was an issue I grappled with when making my own decision about a bone density scan.  I was premenopausal.  And the answer I got from the oncology muckety-mucks was that the kind of bone density loss you can sometimes see with tamoxifen is small and they probably wouldn't treat it, so the test isn't worth it.  I had a bone density scan after my five years on tamoxifen and before starting arimidex and I was fine.  (though after a year on arimidex I did have some bone loss, so definitely something I have to monitor now).

     I think the fact that OP has previously had the scan and has other reasons not to expose herself to more radiation, strongly weighs in favor of skipping the test, that seems unnecessary to start with. 

  • peggy_j
    peggy_j Member Posts: 89
    edited February 2012
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    Re: bone loss on tamoxifen. I when I met with a bone endocrinologist he said that the hormone "milieu" is different for pre- and post-meno women on tamox.  He said any bone loss on tamox for pre-meno women would be "subtle." (his word). I've seen studies on PubMed where women doing chemo + tamox had bone loss, but some MOs attribute that to chemo or chemo SEs. Just an FYI that there are other opinions. AIs are known to cause more bone loss. I think we can agree on that.

    Unless you are monitoring for a known problem, my understanding is that 2 years if the usual frequency. (unless you have extenuating circumstance, bone loss happens slowly). Also, make sure you get tested on the *exact same* DEXA scan machine. (the serial number is on the test report, so if your office has more than one, be sure to request the right one)

    Claire, sorry to hear what you and your family are going through. That's awful. 

  • Kaara
    Kaara Member Posts: 2,101
    edited February 2012
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    I was told that tamoxifen did not effect the bones the way Al's did, which is one of the reasons I decided to start on tamox even though I am post meno.  I am a small boned person but have had no problems with bone density thus far, and I don't want to start now.  I'm taking lots of supplements to help with any SE's that might come as a result of taking this drug.

  • coraleliz
    coraleliz Member Posts: 158
    edited February 2012
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    Both my PCP & MO thought it was a good idea to get a "baseline" scan on me. I'm now on Tamox. But neither one persued it. I didn't press for it even though I have a strong family history of osteoporosis. I'm still pre-meno at 53. My younger sister, who is very petite, came back osteoporotic(sp). She has gyn issues where she never had a period not brought on by drugs & very low estrogen levels. She was placed on Actonel(after failing Fosamox), subsequent scan showed no improvement. She then went on Forteo for 2 years. She quit taking it. She found information stating that DEXA scans are not so accurate on small framed, thin individuals. I haven't researched this myself but here's an article  http://www.betterbones.com/blog/post/Bone-density-testing-biased-thin-small-women-take-note.aspx " bone and body size, height and weight make a difference in bone density testing, and current bone density testing underestimates the bone density of thin or small individuals."

    So I guess I'm not asking for this test because for me, being thin, small boned, etc......I'm not sure what to believe. I also read that biphosfates(sp) have been shown to increase bone density but not reduce fractures(hip fractures in women). The only reason I'd take a biphosphate it to reduce breast cancer reoccurence & it's believed by my MO that it won't be covered by insurance for that. I workout & have been phsically active my entire life.....so if exercise really helps, maybe a scan would provide good readings anyway.

  • claireinaz
    claireinaz Member Posts: 693
    edited February 2012
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    Ladies, thanks for all your input. I see my onc. today for my 7th taxol.  I am lean but certainly not thin, petite, or small-boned. I've been weightlifting for 9 years faithfully, have been hiking/running/rafting/biking/yoga-ing regularly for so long that I can't even remember. No woman in my family has osteoporosis. We have other issues, like arthritis (and now cancer).

    Since they've already got a baseline 13 months old, I don't see the need to have this test done simply to satisfy their curiosity.  I'm going to refuse. I doubt my oncologist will refuse to start me on tamoxifen because I won't get the test.

    Thank you all! I'll probably be back on this forum with more posts once I start Tamox.

    Claire

  • elimar
    elimar Member Posts: 5,885
    edited February 2012
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    When I looked into the amount of bone loss (pre-menopausal) or bone gain (post-menopausal) confered by Tamoxifen, I remember the figure was something like 4% either way.   Significant, yes, but in itself it is hardly enough to do a swiss cheese number on the bones.

    LtotheK wrote:  "Additionally, it appears it may have a withdrawl effect [to lower bone density] at the cessation of treatment, and so the bone loss outweighs the benefit maintained on the drug."

    I have heard this but it makes me wonder if the overall loss is really more than a woman might have that would naturally occur with menopause?  Whether the loss is actually the same, but that the decline curve for the bone loss is just sharper when you come off the Tamox.?

    LtotheK, do you have any links to a good study of this?  I would like to see what the percentages of bone loss would be either way.  Thanks, if you do.