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Topic: Bone health without Estrogen/Ovaries

Forum: Bone Health and Bone Loss —

Talk with others about bone density, osteopenia and osteoporosis, and ways to keep your bones strong

Posted on: Aug 23, 2013 07:39AM

jill47 wrote:

Hi Ladies, I'm at home recovering from my da vinci robotic assisted total hysterecomy, tubes, ovaries removed. 2 nights in the hospital with some minor complications but I'm fine now. My ob/gyn biggest concern for me going forward is osteoporosis. Have low body fat and no ovaries so walla no estrogen. I'm 48 yo & was menopausal going into surgery & now I guess technically post-menopause.  While I have a general idea of what to do from here like getting a bone density test for a base, resume running once I'm healed, add weight lifting, take Vitamin D, calcium, magnesium. What else should I do to help prevent osteoporosis?  No estrogen therapy as my bc was ER+ and not on tamox or AI's since I had a bmx.  Any advice would be helpful. Thank you.

5/2012 Grade 2 DCIS, 2+cm extensive comedo necrosis. 0/4 nodes. 98% ER+/99% PR+. LCIS/ALH presented after NSBMX 7/12. TH/BSO 8/13. Dx LE arm/truncal 10/2015. Convert to prepectoral 6/20/16
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Aug 23, 2013 07:59AM Moderators wrote:

Hi Jill,

We're sure some others will be by shortly with their experience and advice, but in the meantime, you may be interested in checking out the main Breastcancer.org site's section on Bone Health, specifically the Ways to Keep Your Bones Strong pages.

We hope this helps!

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Aug 23, 2013 10:09AM peggy_j wrote:

Glad you're healing well from surgery. 

I don't know the difference between being menopausal vs. peri-menopausal, but my understanding is that during the first 3-5 years after menopause women have a higher rate of bone loss, and then the rate of loss tapers off. So it's good to be investigating this now. Diet, exercise and supplements can help. Some women choose to take meds. SERMs, such as raloxifene and tamoxifen, can reduce the rate of bone loss in post-meno women. (and reduce the risk of BC recurrence too).

I'm concerned about bone health and asked for a referral to a bone doctor (endocrinologist) and I did my own research on docs. Turns out, most endocrinologists see many patients for other, non-bone issues. So if you choose to have a consultation on your bones, it's worth finding an endo with that expertise. Mine is the former head of the osteoporosis clinic at UCSF. He studied the detailed DEXA scan (not just the 1-2 page text description), and had an extensive intake form to understand my diet, exercise and other life factors. The good news is that you're young and that there are things you can do now to keep your bones strong. While doing this research I've learned that many patients don't think about bone health until they have breaks (when they are much older), so it's great to be ahead of the game.

Hope your healing from surgery continues to go well.

Dx 2/2011, IDC, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Aug 23, 2013 10:33AM jill47 wrote:

Thank you Peggy and Mods.  I read the bone health section here, very informative.  Peggy like you I want to be ahead of the game instead of waiting for a bone to break! I've already broke a clavicle, ankle & jaw from trauma way before bc and bone breaks are painful and now I won't heal like I use to.  I'll consult w/ my GP for a endocrinologist referral or at the minimum get my bone mineral density read by him.  My GP was the wonderful doctor who referred me to my new even more wonderful ob/gyn who performed my surgery, I trust him & his judgment.  My ob/gyn did mention possibly taking Evista but would only consider it if necessary. Like you I'm with a high quality health care system (Scripps La Jolla) & I'm sure they have the right osteo specialist for me.  I wish you the best with your bone, breast & overall health.  

5/2012 Grade 2 DCIS, 2+cm extensive comedo necrosis. 0/4 nodes. 98% ER+/99% PR+. LCIS/ALH presented after NSBMX 7/12. TH/BSO 8/13. Dx LE arm/truncal 10/2015. Convert to prepectoral 6/20/16
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Aug 23, 2013 11:18AM del4 wrote:

jill47, I'm much older than you are, did the Vitamin D3 o get my levels up to 50, cal1,500/mag600, and also 5 years on Arimidex.  All density tests were fine, and I LEARNED a great GREAT deal of that is GENETIC.  So, if your grandmother, mother had "good bones" that will make a major difference for you to.

Also listened to ruthbru on "AI SE Thread" - and still eat my pitted prunes.

Don't understand your last sentence about noting being on AI or tamoxifen cuz of BLMX - doesn't seem to have anything to do with it, unless you had a very, very low Oncotype DX result. 

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Aug 23, 2013 12:44PM jill47 wrote:

Hi Sunflowers, good to hear that genetics play a role because no one on either side has had osteoporsis.  Mom is near 70 yrs old still smokes cigs and has good bones, no cancers go figure.  I mentioned that I'm not  on tamox because I read the section on bco / bone health that SERM's can help slow bone loss, so by being on it, it may help. I'll read the AI SE tread and do some more research, appears I have a lot to learn. Thank you for your reply! Smile

5/2012 Grade 2 DCIS, 2+cm extensive comedo necrosis. 0/4 nodes. 98% ER+/99% PR+. LCIS/ALH presented after NSBMX 7/12. TH/BSO 8/13. Dx LE arm/truncal 10/2015. Convert to prepectoral 6/20/16
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Aug 23, 2013 01:15PM del4 wrote:

Jill - serms are usually given to women who haven't had the surgery you've had.  You could take an AI now, best to talk all this over with your oncologist.  The SERMS are usually given to women who haven't yet gone thru menopause.

Remember, ALL this is something you need to be talking over with your medical team.  Good luck.

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Aug 23, 2013 07:26PM - edited Aug 23, 2013 07:28PM by peggy_j

You'll probably learn this in your research, but AIs work very differently than SERMs and one side effect of AIs is that they often cause bone loss. Pre-meno women can't take AIs (they have too much estrogen to suppress), so MOs recommend tamox. The endocrinologists say that SERMs, like Evista or tamox, work differently in pre- and post-meno women; though some MOs are reluctant to admit this, tamox can cause bone loss in pre-meno women, though it can preserve bone in post-meno women. 

So if your goal is to preserve bone after menopause, AIs are not the answer, but a SERM may be. (if you choose to take a medication at all). I agree--it's best to discuss with your medical team, getting second opinions, if appropriate.

Dx 2/2011, IDC, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Aug 23, 2013 08:02PM jill47 wrote:

Thank you Peggy,  I'm reluctant to take any long term use med unless I have to. Yes my goal is to reduce bone loss with the least SE's.  That is so wierd how tamox works differently for pre & post menopausal women.   

5/2012 Grade 2 DCIS, 2+cm extensive comedo necrosis. 0/4 nodes. 98% ER+/99% PR+. LCIS/ALH presented after NSBMX 7/12. TH/BSO 8/13. Dx LE arm/truncal 10/2015. Convert to prepectoral 6/20/16
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Aug 23, 2013 09:31PM del4 wrote:

I did 5 1/2 years of Arimidex with no bone loss.  Had bone density tests before starting, and every two years while taking it.  Slight INCREASE in bone density during the last year.  Not true that all people taking AI's experience loss of bone density.

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Aug 24, 2013 08:57PM - edited Aug 24, 2013 09:00PM by peggy_j

Sunflowers, wow, good for you. My understanding is that since AIs suppress estrogen they aren't able to help build or preserve bone, so maybe you saw the benefit of some of other things you were doing. Since I'm concerned about my own bone health, can I ask what other things you were doing? diet, exercise, etc? I want to know all the things that can work. thanks. (p.s. if you're posted this in another thread, feel free to just point me there. thanks!)



That is so wierd how tamox works differently for pre & post menopausal women.

jill, yeah, it is weird. My endocrinologist kept saying that tamox behaves differently in different "estrogen milieus."  FWIW, since my MO was pretty insistent that tamox is all-good, all-the-time, I did get help doing research and there are papers that back up the endocrinologist (including one he sent me.) Finally, my MO consented that maybe it was true but...she still thinks the cancer-fighting properties are worth it, even if it risks bone health. 

Dx 2/2011, IDC, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Aug 25, 2013 07:54AM del4 wrote:

the AI SE thread has everything - I followed the advice of that thread. 

ALSO - a great deal of bone health is GENETIC.

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Aug 28, 2013 09:22AM cp418 wrote:

http://www.sciencecodex.com/calcium_supplements_may_not_prevent_bone_loss_in_women_with_breast_cancer-118183

Calcium supplements may not prevent bone loss in women with breast cancer

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Aug 28, 2013 11:10AM BayouBabe wrote:

cp418 - I saw this too. It is so discouraging. Even with following all our doctors advice, it is all for naught! Ugh.

BRCA1+, IDC
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Aug 28, 2013 11:22AM SpecialK wrote:

The study cited used 500-1500mg of calcium, and 200-1000IU of Vitamin D, which are lower levels of supplementation such as what you might find in a multi-vitamin.  I think many of us take these supplements at higher doses, particularly the Vitamin D, so I wouldn't throw in the towel on whether or not supplementation is a failure.

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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Aug 28, 2013 11:32AM gardengumby wrote:

Jill, like Sunflowers, I question why a BMX would preclude taking an AI or SERM.  Since you had an oopherectomy, I would assume an AI would be recommended rather than a SERM.  You said you were ER+.  Do you know at what rate?

BRCA1 & 2 negative - 3 family members. Oncotype 14. DCIS 7.5 cm, intermediate Dx 10/28/2010, DCIS/IDC, Left, 1cm, Stage IIA, Grade 2, 2/19 nodes, ER+/PR+, HER2- Surgery 12/20/2010 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (right): Tissue expander placement
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Aug 28, 2013 11:45AM - edited Aug 28, 2013 12:52PM by SpecialK

For women diagnosed with pure DCIS, and no invasive cancer, bi-lateral mastectomy provides a recurrence risk of 1-2% over 10 years.  Tamoxifen is the only approved hormonal therapy for pure DCIS, and may reduce that risk by 50%, so a net benefit of only 1% at best, possibly being offset by potential side effects.

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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Aug 28, 2013 12:47PM jill47 wrote:

Gardengumby: quite high...98% ER+ and 99% PR+.  Last year before the gynological benign tumors came upon me this year, MO said no to tamox because as SpecialK says rate of recurrance so low for DCIS treated by bmx.  Way I figure (I know, I know completely unscientific) now that my estrogen & progesterone gone with hyster/ooph, note my body fat is low (I run a lot) so gyno says I don't have enough body fat to produce estrogen, my risk for any hormone + is even lower if none at all.  BS follow up appt next week should be interesting, he nor my MO know about the hyster/ooph. or at least they didn't follow up w/ my gyno on the 2 page report he copied them on before my surgery. I'll be asking him about my bc risk now that my ovaries are gone & get his opinion on bone health.

5/2012 Grade 2 DCIS, 2+cm extensive comedo necrosis. 0/4 nodes. 98% ER+/99% PR+. LCIS/ALH presented after NSBMX 7/12. TH/BSO 8/13. Dx LE arm/truncal 10/2015. Convert to prepectoral 6/20/16
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Aug 29, 2013 12:01PM peggy_j wrote:

cp418, thanks for the link to that article. Sometimes these summarized versions create more questions for me, so I found the original article and posted it in a separate thread (in case members here missed it in this thread)

Dx 2/2011, IDC, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Oct 1, 2013 11:02AM - edited Oct 6, 2013 11:54AM by Annabella58

This Post was deleted by Annabella58.
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Oct 6, 2013 12:01PM Annabella58 wrote:

Ladies, do not "get" the T score thing. What are the parameters for needing a bone drug?

They just say your T score is low. What is low? MUST we take bone drugs? My onc wants to do them as he said they lower risk of recurrence. I happen to know that this is now a flawed study. It's been published by Memorial Sloan that they do NOT statistically lower our risk of bc recurrences. When I asked him he did not know of it.

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Oct 11, 2013 09:19AM Annabella58 wrote:

bump

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Oct 12, 2013 07:09AM jill47 wrote:

Bump for Anniealso. Anyone?

5/2012 Grade 2 DCIS, 2+cm extensive comedo necrosis. 0/4 nodes. 98% ER+/99% PR+. LCIS/ALH presented after NSBMX 7/12. TH/BSO 8/13. Dx LE arm/truncal 10/2015. Convert to prepectoral 6/20/16
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Oct 12, 2013 01:26PM Annabella58 wrote:

Thanks, Jill...I am beginning to realize no one has this answer, not the oncs, drs. us.

Some drs. still believe bone drugs help recurrence neg status.

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