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Topic: Osteoporosis DX at age 32--red flag for bone mets?

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 8, 2013 09:53PM - edited Aug 8, 2013 11:01PM by Adelaide77

Adelaide77 wrote:

Hi. I was hoping someone might be able to chime in on whether or not I should be a squeaky wheel about a health issue that I feel isn't being explored by my medical team as thoroughly as it could. Background is that I was DX with stage one IDC + a large DCIS in September 2012. Had a BMX November 2012. Prior to starting to tamoxifen, my MO ordered a dexascan. Several years prior, I had a dexa that came back as osteopenia. This most recent one came back osteoporosis in 2 of the 3 areas checked and osteopenia in the 3rd area (hip, spine, & ??. Drawing a blank right now.). I was referred to an endocrinologist who ordered blood tests to check parathyroid, etc., to rule out underlying hormonal causes. Everything came back mostly normal (parathyroid slightly elevated but not enough to be of concern). So, summary: I'm 32, diagnosed with osteoporosis, and no one has an answer as to why. Should I be concerned about bone mets as a possible cause? Should I push for a bone scan? I feel I've become a little hypochondriacal since my cancer diagnosis, and lately I have a hard time telling if I'm just being diligent or paranoid. Thanks for any feedback. :-)

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Aug 9, 2013 08:17AM peggy_j wrote:

I've never heard of any correlation between bone density and bone mets. I'm glad your endocrinologist is looking at other issues. In my case, I had significant bone loss while on tamox, so that could account for your recent change. But it sounds like you had low bone density prior to starting tamox (or getting a BC Dx, I would assume). It's hard to know why. But we can't undo the past, so it's good you're getting the input of a endocrinologist.

Dx 2/2011, IDC, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Aug 9, 2013 08:30AM LtotheK wrote:

I, too, became a total hypocondriac.  As time passes, it will get better.

I was young at my diagnosis--39.  And whammo, the following year, I had osteoporosis in the spine. I'm currently on Fosamax, when I can remember taking it.  

Young women who go through cancer treatment have special needs, as the drugs hit them in different ways.  I dont' know if you did chemo, but a young woman going straight into menopause for any period of time can be a culprit.  Tamoxifen, widely understood to be a bone builder, can be a BONE LOSS drug in young women.  Your doctor needs to research that, you can find info about it online. What is good for the general population with this disease is simply not the case with young women.

The bone building drugs seem to have some effect on recurrence, though I don't think osteoporosis is a sign of mets.  What I can say is this, it is good for you to get your density up as high as you can.  Begin a regimen of 3x a week weightlifting, make sure your D is where it needs to be, cut bone robbing foods as much as you can, and analyze your Tamoxifen--you may need a bone building drug, too.  As Peggy said, you need a full workup with an endocrinologist. Fosamax has been just fine for me, don't let folks scare you.

There is a lot of chatter about the fact these drugs don't make the right kind of bone.  I sense this may be a separate issue with mets, as in, we just need more bone in there, it's not a fracture issue per se.  More research is needed.

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Aug 9, 2013 09:25AM Adelaide77 wrote:

Thanks, ladies. Yes, my osteoporosis dx came before starting tamoxifen, and I did not need chemo, so there doesn't seem to be a recent pharmacological cause (although I did take inhaled steroids as a child for asthma, so perhaps those medications put me on a path toward bone loss?). I guess my question centers more around whether my osteoporosis dx was accurate. Does bone mets typically result in low T-scores (or, in my case and in the case of other premenopausals, Z-scores)? My serum calcium & Vit D are both normal, so I guess I'm just mystified about the why behind my bone deterioration and trying to figure it out. Also, forgot to mention that I possibly have a compression fracture in my T12 vertabrae. Showed up on a CT scan for an unrelated issue, and my endo said it's probably nothing since this particular CT wouldn't provide a very accurate picture of the spine, but he ordered an Xray for me anyways, for peace of mind, which I'll be getting tomorrow.

I've been taking increased vit D & calcium at the recommendation of my endo (despite my good serum levels), have started taking magnesium, & have been adding lots of calcium-rich fruits & veggies to my diet. (I'm not convinced dairy is the best source  of calcium with regards to bioavailability.) I usually get a lot of load-bearing exercise but have been taking it easy the last few weeks following my exchange surgery. Hoping to get back in gear soon.

Thanks for the input, ladies.

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Aug 9, 2013 10:49AM LtotheK wrote:

I think you should speak to a second opinion about your question.  It is an important one, and though I don't think there is a correlation, an expert would have a lot more to say.

Tamoxifen may be the culprit at your young age, as could family history, and just plain old bad genetics.  My grandmother had three daughters, she died of osteoporosis (too many breaks at the end).  Two of her girls have bone density problems, one doesn't. The one who doesn't is drastically underweight, and that is often a problem.  Go figure.

I wouldn't be so concerned, because it is manageable.  For the more serious question, I would get an appointment right away.  Though again, I've never heard of a correlation.  It MAY be a risk factor.

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Aug 9, 2013 11:19AM peggy_j wrote:

Yes, steroid use has been linked to osteoporosis. The fact you took them as a kid may mean you didn't develop enough bone growing up. Have you discussed this with your endocrinologist? Seems like important info.

Are the DEXA scans accurate? That's a fair question. My endo said it's best to have repeat tests done on the exact same machine. But he also said they are a bit subjective and there can be some small margin of error. He said if you jump off the table and get back on again and re-do the test, the results could be slightly different. So it's possible they are off by a small amount. You probably know this, but these numbers and categories are somewhat arbitrary. It's kind of like body weight. A person doesn't suddenly go from being normal weight, to overweight to obese. It's a gradual thing and it's the overall trend that's important.

I don't know if the DEXA scan results have any correlation to bone mets. Your endo may have an opinion. Aside from this measurement, do you have any reason to believe you have bone mets? You said you were stage 1. That suggests that the lymph nodes were clear, so the risk of any mets is extremely small. (or as my BS said, there are no guarantees, but this is as close as we get). I sounds like  your MO isn't ordering a CT scan, so you can discuss that further.  There are trade-offs with any tests. Full body CT scans expose you to a fair amount of radiation, so they usually aren't done unless there's a concern.

In terms of managing your ongoing bone health, based on my personal experience (and some studies I've read), tamoxifen can lead to bone loss in pre-meno women.  Endos don't recommend SERMS for pre-meno women. So if you're continuing you have your periods, and are concerned about bone loss, you may want to see if there are other options. I believe some women take shots to shut down their ovaries. This may or may not be your choice, but just an FYI. At this point, none of us can change the past, but there may be options for what we can do going forward.

Dx 2/2011, IDC, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Aug 9, 2013 12:30PM Adelaide77 wrote:'ve given me lots of food for thought about tamoxifen, peggy_j. Going to do some more reading about tamoxifen & premenopausal women. Still having my periods on it, but I've already had loads of emotional side effects on it (mood swings, panic attacks, irritability, suicidal thoughts & urges) that I'd love another excuse to do what I deep down want to do...just stop the tamoxifen & hope that all the other lifestyle changes I've made/am making are enough to prevent a recurrence.

Re: reason to believe I have bone mets, I have no idea. You're right, I had no lymph node involvement, and my onco score was very low, so I really have a best-case scenario. I've had generalized aches and pains since around 2008, and I've just always attributed it to getting older and the stress of pregnancy on my body (gained 60 pounds with both of my children, which is more than half my body weight, so I think it definitely took its toll on my body). Several years ago I started having a strange grinding sound in my knee that my PCP had no idea what it was so she ordered me an xray and referred me to see an orthopedic specialist...neither of which I've done yet, but am planning to get the xray (finally) tomorrow when I get the spine xray. The grinding will go away for several months then return. Painless but just annoying. And during the past 3-4 months, I've noticed several spots--top of my foot, one of my toes, a spot above my ankle, and my wrists--that I will have increased intensity of pain, above and beyond the achiness, usually for a very short spell (day or two), sort of a stabbing pain. It will go away, but then return again a few weeks later. And my back & hips almost always hurt. I have no idea. Prior to my dx, I had just grown accustomed to the overall aches & pains and considered it the new normal, but now, post-dx, I can't shut off the "what ifs" and wondering if those aches & pains aren't normal after all. I feel like chicken little sometimes & wonder if I'm making something out of nothing, but I also don't want to ignore something that should be explored. I think I'm going to mention all this to my oncologist when I see her at the end of the month, and let her decide the best approach.

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Aug 9, 2013 06:42PM peggy_j wrote:

Adelaide77 , both my endocrinologist and oncologist said I should make the tamoxifen decision based on my cancer risk, not due to bone health. There are options (and meds) to mitigate the impact on the bones.  I talked to my MO this week and even though I've taken tamox for two years she still wants me to continue at least for another year, and restart after I go through menopause.

Some of your SEs seems severe, like suicidal thoughts. Those shouldn't be treated lightly. I haven't heard of those as SEs from tamox. Have you talked to your doctors about the range of SEs and concerns?

I know I was on high alert when I started tamox. In my case, I waited six weeks after finishing rads before starting the drug. (I wanted time to do research plus I had a long trip planned). As luck would have it, during those six weeks, my knee started acting up again. If I had been on tamox I would have assumed there was a connection. So that was a good reminder for me, that just because symptoms appear (or come back) doesn't mean they are necessarily related to tamox. It's good to keep things in the perspective and look at the long road. 

Dx 2/2011, IDC, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Aug 9, 2013 07:24PM coraleliz wrote:

I've read that DEXAscans are less accurate with "petite" women. Not exactly sure how that is defined but I was pretty sure I qualified at 105lbs. "Petite" women show up osteoporitic when maybe they shouldn't? Or maybe they adjust for this, now.

Dx 2/28/2011, IDC, Right, 1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR+, HER2- Dx 3/15/2011, IDC, Left, 1cm, Stage IIA, Grade 1, 2/4 nodes, ER+/PR+, HER2- Surgery 4/15/2011 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right
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Aug 10, 2013 11:50AM Adelaide77 wrote:

A very small minority of women taking tamoxifen have mood disturbances. I've found at least one other person on this forum who has struggled this way (even to as severe a degree as me) and have found a few additional anecdotals in various other BC support forums. Definitely not a common side effect, but it does happen (my MO confirmed it when I spoke to her about it). I'm taking a compatible antidepressant (Celexa). I've always struggled with depression/anxiety, but being on tamoxifen has taken it to a whole new level (I have never been this bad, either on or off an antidepressant, as I've been since starting tamoxifen--so I'm quite certain the tamoxifen is behind it). I'm to the point where I am seriously considering stopping the tamoxifen. Today is a bad day, and I feel like I'm losing it. I don't think I can live with these ups and downs for 4+ more years. Going to hold out for a few more weeks till I see my MO and try to at least get some sort of blessing from her on stopping it. Stupid $%#@-ing cancer.

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Aug 12, 2013 08:23PM Adelaide77 wrote:

Well, xray came back as definite T12 compression fracture, demineralization, and (in the thoracic) mild degenerative disc disease and exaggerated upper thoracic kyphosis. Still waiting to talk to my oncologist and endo to see if any additional tests are needed. These things aren't supposed to happen to 30-somethings, right? What is wrong with my body? Very frustrated right now. :-(

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Aug 13, 2013 04:17AM Hindsfeet wrote:

Adelaide, I feel for you. I'm so sorry you are suffering with this kind of pain at such a young age. I don't know if this helps but taking vitamin K with vitamin D is suppose to help the assorption of D. I heard, debate over this, that calcium is supposely not good to take. Eating well, green foods and protein foods (raw milk) especially is good for bone health. Weight bearing exercise is also suppose to increase bone mass. Sugar bad and not so good for healing.

I'm a lot older and declined tamoxifen due to side effects. Sometimes for early stage cancer, and you had a mx the risk is miminal for recurrence. I decided against it because I too have otheoporisis in my lower back. I can't afford bone loss, and I'm allergic to Folsomex.

With all that said, because I have lower back pain now for 2 months my oncologist order a bone scan that I'm having tomorrow morning. She doesn't want to take chances. I sized it up to be nothing more than otheoporisis or arthirtis pain. Hopefully it's nothing more. To insert, I did read somewhere that there can be a connection between orthorporsis and bone cancer. Not sure, not enough info on it to know one way or the other. I' know I'm high risk so I'm being pro-activie.

Hope you get the help you need. Pain is horrible.  (((hugs)))

Dx 6/13/2014, IDC, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2+
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Aug 13, 2013 05:57AM Adelaide77 wrote:

Hindsfeet, I so appreciate your response and the tips you gave for improving bone health. I've wondered about taking calcium supplemenation based on some things I've read, and I'm definitely going to be looking into this more as my endocrinologist has me taking a large daily dose of calcium. I've recently started eating somewhat paleo--lots of veggies and protein, no grains (although I sometimes eat a few grains). Sweets are definitely my downfall, so I'm going to really focus on reducing it.

Praying your bone scan tomorrow morning yields nothing more than osteoporosis and arthritis!

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Aug 13, 2013 07:18AM Adelaide77 wrote:

Hmm...been doing some reading this morning, and came across something that said high protein foods are BAD for bone health since it prevents calcium absorption. So much conflicting info out there! Who to listen to? It's amazing how complex the human body is and how much we just don't understand about it...

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Aug 13, 2013 07:32AM chrissyb wrote:

Adelaide I take Femara but am allergic to bisphosphinates ( bone building drugs). I also have some osteoporosis but to keep my bones as good as possible I take calcium, magnesium, zinc and Vit D. They all work together for bone health taking one without the others does not give you the optimum result.

Protein is good but not if you overdo. The normal serving per meal is fine with your veg. Most diets, no matter which one you follow, allows you to eat plenty of fresh veg for bulk to stop you feeling hungry. Normal serve for protein is 100 - 125grams per meal. Make sure you are not getting all from animal protein but also from other sources.

Love n hugs. Chrissy

I found my peace which gave me strength. 52 at dx. Dx 12/8/2003, IDC, 4cm, Stage IV, Grade 2, 0/12 nodes, mets, ER+/PR+, HER2-
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Aug 13, 2013 07:42AM Adelaide77 wrote:

Thank you, Chrissy. I have started drinking a half-dose of epsom salt water daily (so as not to get the laxative effect!) to get some magnesium, am already taking tons of calcium & vit d, and will look into adding zinc as well. Started doing green smoothies a few weeks ago...going to continue since it's a great way to work in those calcium-rich (but sometimes bitter tasting by themselves!) greens (collard greens, turnip greens, kale, etc.). From what I've read, calcium from these greens is much more bioavailable than from dairy. All the more reason to eat our greens, I guess!

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Aug 13, 2013 07:50AM chrissyb wrote:

Adelaide, keeping dairy to a minimum is way better and as you are doing upping the greens is much better for your calcium Intake as well as the added vitamins and minerals. Do you use things like Chia seeds? They are great in smoothies and are a great source of protein as well as other vital nutrients .........they are classified as one of the new super foods.........I find them very versatile and the don't need to be ground to be useful to your body.

I found my peace which gave me strength. 52 at dx. Dx 12/8/2003, IDC, 4cm, Stage IV, Grade 2, 0/12 nodes, mets, ER+/PR+, HER2-
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Aug 13, 2013 08:00AM Adelaide77 wrote:

Yes, I have been experimenting some with chia seeds and adding them to some of my smoothies (and even made some dairy-free coconut oil/cocoa/medjool date/chia seed truffles with the hubby a few weeks ago as a special treat). Love chia seeds. And what a boost of energy from them too! Will continue to incorporate them into my diet. Thanks, Chrissy!

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