bones bones bones: osteoporosis and related concerns

peggy_j

Several threads have veered onto the topic of osteoporosis, so I thought I'd start a new thread here. What are your concerns? What are the known risks and how do you reduce them? Any questions or issues with hormone therapy and it's impact on bones? 

Kathy044

Let's not forget about concerns about bones after chemotherapy mentioned on the other thread.

I was thinking about this this morning during an OsteoFit class.  Not only did I come out of chemo and rads a year ago with a dx of osteoporosis (in the spine only) but poor muscle strength and balance, also mild neuropathy in fingers and toes.  I noticed this morning my balance has improved remarkably, I can catch a ball too.

Falling is the main cause of fractures, not low bone density.

Kathy ( now on Armidex, calcium, Vit D and Etidronate, a bisphosphate)

dogsandjogs

I was diagnosed with osteoporosis about 3 years ago. In 2009 I broke my hip while running in a race. I did NOT fall; just had to stop because of bad pain in the groin area. Thinking it was just a pull, I waited 9 days to see the ortho who told me I had a femoral fracture.  A few months later I had another bone density test and due to Fosamax I was now osteopenic and only had osteoporosis in the other hip! Good sign I guess although it did say on the report: Left hip in danger of fracture. Last fall I had a terrible back pain - turns out I had 3 fracture vertebrae.  Then came the cancer diagnosis and now I'm on Aromasin. I am not happy about it, due to the state of my bones, but am going to try it. I'm assuming I will have periodic bone density tests to see how my bones are doing.

PS  I was told that you break your hip first and then you fall. Not the other way around. But in my case I did not fall, which was very, very lucky as they were able to fix my hip with 3 pins and I was back to running within 4 months.

hymil

>>I was told that you break your hip first and then you fall. Not the other way around.

That's what i heard too. Although if you are already having falls for other reasons eg Parkinson's, who can tell which comes first.

I would be wary of high impact activity while relying on the strength of those three pins, they are not infallible and can accelerate bone loss because of offloading the stress, and providing focusses of extra strong stress points. Check with your orthopod what activity level is safe.  Very glad to hear the extra length of active life you have got though.

I'm concerned about this topic as I have strong family history of osteoporosis and had expected to start HRT soon, then BC chnged the rules and put a stop to all that. I run now and don't know if i should quit dairy or not 

>>Falling is the main cause of fractures, not low bone density. 

I guess you could put falling or similar trauma as the precipitating mechanism, and low bone density as the underlying cause? Or in your case, chemo as the cause of the low bone density...  and therefore BC as the root cause?  Kathy i'm glad to hear the exercise class has been so helpful. I seem to spend a lot of time at the gym and some days i wonder if it makes any difference, it's good to be reminded that it does. Im turning into an endorphin junkie!

luv_gardening

srbcsurvivor, I was taken off Arimidex and put onto Tamoxifen after my scan showed I had osteoporosis in the hips.  Tam tends to build the bones up a little.  My main concern is that not everyone responds to Tam, especially with ILC, so I may be taking a useless drug and at increased risk of recurrence.

I'll come back later and post my links and explanations why I use Vitamin K2 and strontium citrate as well as exercise to strengthen my bones as I have things to do now.

-Sheila- 

dogsandjogs

Joylieswithin: Can't remember why the onc didn't recommend Tamoxafin. Maybe because I'm post-menopausal?  He said Aromasin has the least effect on the bones of all the AIs. 

dogsandjogs

Hymil: Well, the ortho said he usually didn't recommend jogging/running after hip-pinning surgery, but he knew how much I loved it so just told me to be very careful.  I wasn't allowed to begin until the bones had completely healed and actually the pins could come out now, but since they are not bothering me we are leaving them in. 

ILMBeaches

I've been on arimidex almost 4 years, 3 bone density tests.  No change.  Osteo does not run in my family.  So far so good.

luv_gardening

Hope and srbcsurvivor, . Someone with osteoporosis can only be given an AI if they are also on a bisphosphonate. I refused the bisphosphonate so I had to go on Tamoxifen.  My oncologist assured me my bones would be strengthened by Tam so I looked for the studies and could only find small ones for menopausal women, but they did confirm what my onc said.

http://www.cancer.gov/clinicaltrials/results/summary/2008/atac-bone0308
 

Of the 9,366 postmenopausal women enrolled in the original ATAC study, 108 completed the substudy reported here. Fifty-seven had been randomly assigned to the anastrozole-only group and 51 to the tamoxifen-only group. The substudy's goal was to see how anastrozole and tamoxifen affected bone mineral density in the hip and the lumbar spine (lower back). Measurements were taken when the study began, and again at one, two, and five years.
Results

At the five-year mark, women in the substudy's tamoxifen group had actually gained bone mineral density: 2.77 percent to their lumbar spine and 0.74 percent to their hip. All gains occurred in the first two years and did not increase over the next three.

Women in the substudy receiving anastrozole for five years lost a median of 6.08 percent of bone mineral density from the lumbar spine and 7.24 percent from the hip. The spinal bone loss was faster during the first two years, whereas loss from the hip occurred at a steady rate.

When the substudy began, just under half of the women in each group had osteopenia (bone loss less severe than osteoporosis). Of these women, four from the anastrozole group progressed to osteoporosis during the five-year study period, compared to one woman from the tamoxifen group. Among women with normal bone density before the study began, 14 from the anastrozole group developed osteopenia, compared to three from the tamoxifen group.

dogsandjogs

Joylieswithin: Thanks so much for posting this. Food for thought!!

peggy_j

JoyLiesWithin, that's for posting that info, esp. that tamox's bone benefits happen in the first 2 yrs. My doc had previously suggested another DEXA scan in 2-3 years, so it would be nice to see some measurable progress. FWIW, someone here on BC.org found some studies where, in certain cases, some pre-menopausal women do not get the bone-building benefit. The studies were pretty specific cases (pre-meno women who went through chemo and were throw into menopause?) Not sure if that study has been reproduced, but it was definitely not my situation. Thanks for the info about AI + bisphosphonates. Bis's are definitely not in my future. BTW, does anyone talk about raloxifen in this convo? Maybe not relevant if you're post-meno? My MO said raloxifen is not used as a hormone therapy for BC (though they've seen some benefit to prevent BC while strenghtening bones? Maybe I should have taken that the previous 5 years. ha!)

dogsandjogs

Luckily I don't have any SEs with Fosamax.

katsOK

I had osteopenia before I had chemo and arimidex due to a parathyroid problem.  I had regained some bone before I came down with breast cancer.  I changed where I had my bone density test done after the bc diagnosis but the new place said I had not progressed on the arimidex.  That being said, I fell recently and fractured my t-12 and they are considering surgery to put in a rod.   I go to a new doctor this next month to see if they are going to put me on a bone building drug I dread that as I have been on them in the past and it caused stomach pain.  My GP has research the subject as she also has problems with osteoporosis and she thinks Vit D is the biggest help.  I am anxious to hear what the new doctor has to say about it.  My oncologist does not put her patients on the drug you have to go elsewhere for it.

SoCalLisa

If you are on an aromatase inhibitor keep getting the DEXA scans..I was above average when I started and went along just fine, then BOOM, my bone density submarined..

katsOK

SoCalLisa   Do you get the DEXA every year or every other year?  When I called to make the appointment with the new doctor they said they could not have another one done since it has not been two years... since I have had breast cancer, am on Arimidex and have a collapsed vertebrae I would think I would get another one no matter what.  I may call them again about it.  

otter

My insurance will only pay for a DEXA scan every other year.  My doc ordered one at the 1-year point, just to see what they would say, but they denied coverage.  They sent her (and copied to me) an 8-page explanation of why annual DEXA scans are not medically justified in someone my age (58 at the time) who does not have osteoporosis or major risk factors.  Apparently, they didn't consider Arimidex or mild osteopenia to be major risk factors.  The denial document cited clinical trials and other evidence published in medical journals.  It seemed convincing.

I'm okay with waiting 2 years between DEXA scans.  My doc said the results of DEXA scans are so subjective that it's hard to see changes in less than 2 years anyway.

This is a good topic.  Last year I was thinking about asking the Moderators if we could have a new forum on osteoporosis and bone health.  These same issues -- osteoporosis, osteopenia, DEXA scans, FRAX estimates, hormonal therapy, calcium supplements, Vitamin D, bisphosphonates, etc. -- come up in all sorts of places on the Boards.  I never asked about a new forum, though, because some BCO members have been saying there are already too many forums.  And, I couldn't figure out what section it should be in if there was a forum on bone health.

otter

mawhinney

I think a separate forum for osteoporosis or bone issues is a fabulous idea.  I have many concerns and questions.  Due to  Femara I have had a 3% decline in bone density in the past 2 years and am classified as high risk for a hip fracture! I am now trying Tamoxifen as it is susposedly is not as damaging to the bones.

 Insurance & Dexa test - Medicare, my primary insurance, covers Dexa Scans every 2 years but my secondary insurer covers the test every year.

ICanDoThis

Wanted to add this from the discussion on the Dec 2010 San Antonio Breast Cancer Symposium

 Hawaiian: Are there any new "inhibitors" or treatments like tamoxifen that are easy on the bones and offer better protection against recurrence? I'm on tamoxifen and may switch to an aromatase inhibitor. I'm 53 and have bad osteoporosis. I take Boniva, calcium, and D supplements.
Answer -Eric Winer, M.D.: Tamoxifen is easy on the bones in a postmenopausal woman and the decision to switch if you already have osteoporosis and are on a bisphosphonate needs to be considered carefully. At the present, there are no drugs that will be available in the next 2-3 years for women with hormone-receptor-positive cancer looking to prevent a recurrence.

 This is also what I was told when I was diagnosed, and had osteoporosis. After 2 yrs of tamox, I have stepped back over the line to osteopenic, and I think that good management of D, Magnesium, K2, and a little calcium, along with the Tamox and regular exercise have done the trick.

peggy_j

This is a great discussion. Thanks everyone for sharing your knowledge (like the insurance coverage). FWIW, I've heard that it's better to get your DEXA scan at the same place every time to ensure they are monitoring your incremental change. (that didn't comfort me, that the readings could be different depending on which machine they use. sheesh) Anyway...

JoyLiesWithin, in another thread you mentioned a couple interesting points: a) that it's possible to take too much Calcium (via supplements) which could result in problems, like calcification of the arteries and b) Vit K can help  bones. I was emailing the nutritionist at my MO's office about something else and snuck in a few of my bone questions. She said you're right--that too much calcium can be bad (lead to heart attacks?) and also that Vit K helps build bones. She also said that too much Vit K can have an increased risk of blood clots (something I'm already concerned about) so her advice is to get it from diet. She had a much more involved answer. I want to paste it here but I'm having javascript problems. I probably won't be able to fix my computer issues for a couple of days, but when I do, I share her info. Thanks for the heads up. 

dogsandjogs

Another catch 22 situation. Vitamin K strenghten your bones (which I need having osteoporosis and osteopenia) but I have to watch my intake of vit K due to being on Coumadin (for atril fib)

luv_gardening

Peggy and Srbcsurvivor, yes, vitamin K2 can thicken the blood and shouldn't be taken with certain blood thinners.  I am at increased risk of thrombosis with Tamoxifen but don't believe the small amount of K2 will be sufficient to harm.  Also I take plenty of fish oil which is a blood thinner.

Tamoxifen is a double edged sword when it comes to strengthening the bones as there is a rebound effect when we stop taking it.  Withdrawal of estrogen when we go through menopause, stop HRT or tamoxifen all has the same effect of causing accelerated loss of bone for a few years after the event.  I remember reading about this when a close relative went on HRT for the second time.  Each time we stop the estrogen source we end up worse than when we started.  I don't think they take this into account when prescribing HRT or Tamox.  I think, in the back of their mind they just think, we'll put them on a bisphosphonate to overcome the eventual bone loss, without taking into account that some of us object to the drug and won't take it. 

http://www.medscape.com/viewarticle/573782

I've been researching this during the week and found that just having breast cancer without any treatment causes bone loss. (I'll find the study later as I'm in a hurry) Chemo causes bone loss.  AI's cause bone loss.  Tamox eventually causes bone loss after we stop taking it.  Our bones are in strife from all directions.

I think this hormone forum is the right one for osteoporosis as the hormonals are the chief cause and it's a side effect.  But having bone health or osteoporosis added to the description would direct people here.  With all the different treatments and dire side effects a separate forum would be very welcome though. 

ICanDoThis

One thing I can say, even if we add a Bones forum (which is a good idea, given our treatments and the age of the ladies on this board), we will continue to post about osteo-issues whereever they are.

But this isn't a bad idea. I had a terrible fight with the resident to my first onc, because she was bound and determined to insist that I needed to be on an arimidex, and had no answers to my questions about osteoporosis. She felt that I was lucky to have this additional 1% advantage over tamoxifen, and had no idea about quality of life at all. 

I know that I am lucky, to have had this choice, and to have done the research to know enough to ask the question.But, early stage women who are post-menopausal but still have a good 20 or 30 years ahead of them need to have a place to go where the information is.

sam52

I do not know what my bone density was pre- bc, since I did not have a DEXA scan at that point, but after 2.5 years on tamoxifen, I was switched to aromasin, and asked for a scan. I was identified as having osteopenia, which was attributed to chemopause.

I took a bisphoshonate (Fosamax) for about 2 years and then a further DEXA scan revealed that far from helping, I now had osteoporosis.THis was now attributed to the aromatase inhibitor.

However, on consulting an endocrinologist,it was discovered after several tests, that I had hyperparathyroidism; high levels of parathyroid hormone will affect the calcium 'thermostat' in the body and leach calcium from the bones. The cause is a (benign) tumor in one of the parathyroid glands, and the commonest symptom is osteoporosis. Unless the tumor is surgically removed, no bisphosphonate treatment will help, and supplemental calcium can actually be dangerous, since it is then deposited in other parts of the body.

I had a minimally invasive procedure to remove the offending parathyroid galnd, amd am assured that the remaining 3 will now function normally, and that my bone density should recover somewhat.

However - my endocrinologist ,using the FRAX test, has decided NOT to actively treat the osteoporosis, since I apparently fall in the range where treatment could be detrimental; there are risks in supplementing calcium in a post-menopausal woman, and the bisphosphonates have potentially serious side effects.

I am taking Vit D, magnesium, K2 and fish oil.Hopefully this and exercise will help build bone again.

It may be worthwhile, given that there appear to be quite a few of us here with both bc and parathyroid disease, to consider having a blood test for possible  hyperparathyroidism if you have osteoporosis.Many endocrinologists consider this to be a very under-diagnosed condition.

lago

joycek I hear you. I am slightly osteopenic (tested at age 49.5, now 50). My mom had osteoporosis. I'm white, thin etc. The thing with osteoporosis is it happens slowly. My primary care is watching me. My onc and my PC both want another bone densisty test in a year. I started Anastrozole March 1st. My calcium was upped by my onc because of the osteopenia. I do exercise daily.

duckyb1

Ok, what the hell chance do we really have...........take something to stop recurrance, and welcome Ostopenia (which I already have) or full blown Osteoporosis............break a hip, break your back (have already done that too), so where the hell does quality of life come in............You surive cancer and something else is introduced into your life.  The friggin cure will kill you.  I'm thinking it's all bullshit.  OK, GOT THAT OFF MY CHEST.......WHERE THE HELL IS THE DESSERT

jacksnana

sam, are you still taking anastrozole?  I am taking it currently and had osteopenia before starting.  I'm terrified of taking a bisphosphenate.  My oncologist seems to take a 'what's the big deal?' approach in regards to taking one, but I sure don't want to risk all possible the side effects.  May have to ask for a parathyroid test, wonder why they just don't do that routinely.  I agree that a Bones forum would be helpful, it's something that everyone who's taking an AI is concerned with.

LouLou40

 I was dx with BC at 39, went into menopause during Chemo and remain in menopause over 2 yrs later. I had a Dexa scan after Chemo finished before starting on Arimidex and it showed osteopenia, I'm small framed but very fit and do a lot of running, but wasn't that surprised as I was very thin and didn't have a diet high in calcium during during my teenage years.

My Onc thought there was a good chance I would get my period back so I increased my Vit D, calcium and weight bearing exercise and continued on the AI and had my estriodial level checked every 3 months to make sure I was still in menopause, my estriodial level was always undetectable on Arimidex........great for BC but not for my bones..

I had a follow-up Dexa scan at one year post starting Arimidex and it showed a whooping 11-13% in BMD across all my hip and spine measurements so now have osteoporosis at 41, my Onc described it as alarming. I ceased Arimidex and have commenced on Zometa infusions, I am only having 4 infusion 6 months apart and will see how my BMD is looking after that, I discussed the long term SE's of the Zometa with my Onc and decided the benefit out weighed the risks.

I have ceased Arimidex and my Onc said no AI ever for me,  we  discussed starting Tamox but he thought it would only reduce my risk of recurrence by about 2 % as I have low hormone receptors and being Her2 not sure how effective Tamox is. My estridiaol levels are low so I have decided not to take the Tamox and surprisingly feel very comfortable not being on any hormone therapy as is my Onc.

I see a physio that specialises in osteoporosis and she has given me exercises to increase lean muscle mass and increase my BMD, will hopefully see an increase in BMD on my next DEXA. 

jacksnana

LouLou,  I'm small and thin also and am so afraid that my scores will have gone down and I won't be able to continue the anastrozole.  And that was the big scary part for me when I started arimidex a year ago, really didn't want to take it.  But since I've barely had any side effects I'm hoping to continue to be able to take it.  So glad you're feeling comfortable with not taking anything and hope if that is the way it turns out for me I'll be able to do the same!   Here's hoping the zometa does its job for you and gets you back to the osteopenia stage. 

lago

LouLou40 What where you ER/PR scores. I was 30% ER and 5% PR. It's not unusual for HER2+ to have low or no hormone receptors in tumors.

BTW I have read that taking the bisphosphonates seems to have more SE than getting them injected. I also read that taking a break from them after 5 years reduces the chance of brittle bones.

LouLou40

jacksnana,

I tolerated Arimidex really well, just minor hip stiffness and always assumed that I would have the  Zometa infusions so I could continue on the Arimidex for the full treatment length, that's the impression I got form my Onc before I started the Arimidex when I had osteopenia.

I was really shocked when my Onc pulled the pin on AI's altogether then more shocked when he he said he was comfortable for me not to be on any hormone therapy. he said the Chemo and herceptin was the most important part of treatment for me, not the hormone therapy. It felt like extra security against recurrence popping that Arimidex daily, was a little nervous initially about stopping, but have full trust in my Onc.

Must admit since stopping the Arimidex I feel really great, no joint pains and way more energy.

elimar86861

peggy_j, I see you did start a thread on this and it's off and running already.

Being in the age, race, ethnicity, and body type to be more likely to get osteoporosis; plus having a history of it in the family, I ask my MO to order the DEXA for me.  I got a baseline scan right around the time I began Tamox. At that time, I think they measured femor (fine) and pelvis (so-called osteopenia.)  Won't know about any changes until my second scan due this winter.

Now the reason I wrote "so-called osteopenia" is because it is all based on deviation from the "average" bone density in a 30 year old woman.  I have no idea if I was even close to the "average" when I was thirty.  I think more important than numbers of my initial scan will be the subsequent scans that will either show a trend toward maintaining density or show loss.  Since I am taking Tamox., maybe I will even see a slight increase.  

I kind of hate the "osteopenia" label, because many women have bones that are not as dense as that "average" 30 year old, and they may maintain at that density for many years and never drop to the density labeled osteoporosis.  Right now, I think it serves as a prompt for clinicians to push the Fosamax, before a woman really even knows if she is having an actual trend towards loss.  What I am meaning to say is that if your initial scan falls into "osteopenia" range, you might be suggested to get on the biphosphonate bandwagon right then.  I'm more of the mind, that if you don't have actual osteoporosis, maybe wait til you have 2 or more scans to at least see if you are declining in mass, or if you maintain at that same "osteopenia" level.

With minor "osteopenia," a woman's bones are hardly reduced to Swiss cheese, and aren't likely to be snapping like twigs, so with that label you are not really in greater danger of fracture.

I know the counter argument is to "catch" the bone loss at the "osteopenia" stage before it worsens.  Well, for some women it never does, and I'd rather not be ingesting the latest product til I knew I did need it.  However, with so many of us on Tamox. and AI, I will be the first to admit that it should still be monitored closely.