Osteopenia of the spine

Mommyathome

Hi ladies. I had a BMx January 2014 after being diagnosed with DCIS. I also had a TAH/BSO in July 2014. I was just notified after having a bone density scan that I have osteopenia of the spine, -2. I have been on viactiv with 1000 mg of calcium and 1000 ng of vitamin d. My questions are how often do you have bone density scans? Is 1000 mg of both calcium and vitamin d enough to improve my bone health? What are some other things that will help? Do anyone have osteopenia?

proudtospin

Hi Mom, I had some osteopenia years ago, took Fosamax for over 5 years till stopped (it is not something you can take forever~~).  Had a bone density and big improvement as in back to pretty much where I should be.  Then came the big C, and 5 years of AL.  I started to do weight bearing exercises, used lots of weights and plenty of time in the gym. 
Good news is that the bone density at the end of my 5 years on AL shows my hard work paid off and all is fine, tiny bit of osteopenia but all else is cool.

I did take and still do a multi and calcium suppliment

SpecialK

I was osteopenic, but stable, prior to my diagnosis of breast cancer, and I had a TAH/BSO nine years earlier.  After chemo and six months of Femara I had lost quite a bit of density so was started on Prolia injections every six months, which returned my density to normal.  After my hyst/ooph I had DEXA scans every two years, which is the normal recommendation, and had a good pre-treatment baseline because I had one the same day as the mammo/US that led to diagnosis.  I was unable to take oral meds (Boniva, Actonel, Fosamax) for osteopenia due to a previous GI surgery for reflux.  The IV version (Reclast) was not offered in military hospitals at that time.  I would check with your MO and ask about adding bone strengthening drugs, and I would also recommend you ask about your dosages of calcium/Vit D, but I think you need more than you are taking.

Mommyathome

Proud to spin and special k,
Thanks for your response. I meet with my bs in march so I'm going to ask her recommendations on screening/tests and vitamins/drugs. Question, the treatments you mentioned, do they contain estrogen?
I was told by primary dr, gyno and oncologist that 1000 of vitamin d and calcium is enough. My vitamin d levels are low! It's just so frustrating when u have health issues because u don't know if the drs are knowledgable enough and when one dr says something that can jeopardize ur health! I just wish u could get info from ur dr and trust that it's correct!i am going to see an endocrinologist in march to discuss the osteopenia so I guess she would know more than my primary, bs or oncologist... Well maybe!

We're u both diagnosed w osteopenia PRIOR to bc and/or hysterectomy?
I had hysterectomy July 2014... Do u think it only took 7 months to cause issues or it was probably an issue before but was never detected?

SpecialK

Anyone having an ooph should have a baseline bone density right then.  It is important to know your status prior to the deprivation of estrogen.  I had a total hyst/ooph nine years prior to my breast cancer diagnosis, and had my first bone density at that time - I was osteopenic, but remained stable over that time between then and the breast cancer diagnosis. I also fit the physical profile for osteopenia, so I might have developed it anyway.  My hyst/ooph was done when I was 45 and firmly still in a menstrual cycle - I experienced immediate and intense surgical menopause.  I had this surgery due to numerous fibroid tumors in the uterus causing hemorrhaging, and they also found a 3cm pre-malignant tumor in my right ovary.  I am not sure I would rely on your breast surgeon for advice on supplements - I would ask your MO, primary care, or an endocrinologist.  There is no estrogen in anything I am treated with for osteopenia, or in any supplements I take.  I do take vitamin D and calcium, it is required by my MO as long as I am on Prolia.  Prolia is denosumab, the same drug given for women with bone mets by under the name Xgeva.  Prolia is a lower, less frequent, dosage though.

proudtospin

my BS never discussed bone density with me, my PCD did may years before any cancer diagnosis.  I was menopausal when diagnosed so ALs were the recomendation

I take regular OTC and a multi, nothing special.  But I do a lot of weights in the gym

 

Hopeful82014

I would agree that you're probably not taking enough D3. I have been told by my GI that D3, calcium citrate and magnesium work in concert. I take that at night as the mag helps with sleep.

I have been mildly osteopenic for years and, like Kay, had dexa and routine mammogram on same day. Nothing has been routine since then.

I have been able so far to remain stable without drugs. I do a lot of weight bearing exercise as well as strength training, as well as pretty much eating whole, real food. I do take a fair amount of D3 (upped it in Oct per BS' recommendation).

If your levels are low consider doubling what you're taking and see if the results change. Make sure it's D3, not 2. Talk with a nutritionist if MDs are uninformed on the issue.

Mommyathome

I was put into surgical menopause at the age of 42 due to TAH/BSO. I had as periods and with so many people in my family with breast and ovarian cancer we decided this was best.

This was my first bone scan. It was done about 3-4 months after hysterectomy. My drs said 1000 mg and it is d3. I'm thinking the endocrinologist will up it.

jill47

Mommyathorne - My case is very close to yours other than my TH/BSO occured at age 48, one year post BC. My DEXA baseline was 4 months post surgery and bone density was normal. One year follow up DEXA 12/2014; my bone density took a nose dive and now my right femoral neck is osteopenic and left femoral neck and spine are awfully close to osteopenic. My bone density dropped dramatically in a years period of time from depleted estrogen. My MO who is an endocrinologist, is treating my bone health/osteopenia with a Prolia injection every 6 months; I had my first treatment last month. I am not a candidate for estrogen therapy, like many of us here. Seeing you are estrogen deficient, your endo may want to treat you now instead of waiting for a the 2nd year DEXA test that may/will show even further bone loss. The goal is to halt bone loss, prevent osteoporosis and hopefully restore bone density to normal.

Momine

Mommyathome, I have osteopenia in my spine. It was mild prior to the ooph+AI, now it is right on the border to osteoporosis.

In my case, calcium and D is not enough. Also, because I get blood work often, I know that I can't absorb much more than 300mg of calcium supplement per day. Anything over that goes straight to my blood instead of to my bones.

Weight-lifting is good. Walking is good. Eating a generally healthy and balanced diet also helps.

I may have to go on Prolia, but right now I am waiting to see if the bone loss stabilizes. I get DEXA scan every 8-12 months.

Mommyathome

Ladies thanks for your responses! Once again I find myself in a place where I feel confused and unsure. What is DEXA? Hopefully the endocrinologist can help give me good plans to move forward and stop anymore bone loss and fix what's already been done. Because I had DCIS I don't meet regularly with an oncologist but I did for one appt which I set up to speak directly about estrogen use, and bone loss. Because my cancer was estrogen positive I can't use hormone therapy- my gyno was pushing for estrogen therapy even when I explained about my cancer. She said without it I will have bone loss and heart problems!!!! A very stressful decision. Any way hopefully when I see endocrinologist I can speak to her about some of ur recommendations. Thank u

keepthefaith

mommy, My Vit D level was 17 when I was DX'd. I am post-meno and had ooph/hyst 9 yrs ago. I had bone density test and have osteoporosis and osteopenia. I am now taking 4000 IU's of Vit D3 and also calcium with magnesium. I gradually increased as I was having my levels checked. The last time I had it checked it was barely in the normal range at 31.

I believe they consider "normal" to be btwn 30-100. Good that you are going to an endo. Getting out in the sun, (if you are lucky enough to have some), can also be beneficial for Vit D levels.

DEXA is the bone density test.

Best wishes~

Liz_58

My bone density test was stable before my treatments and now after almost two years on Arimidex my bone density test indicated a 7% bone loss in my spine and 3% in my hips. The report used the words significant deterioration which has me concerned. My MO said I shouldn't worry. She said moving to Tamoxifen was an option but she recommended I stay on Arimidex and start taking Actonel for the duration of my Arimidex. I don't recall if she gave me a reason why she preferred that route over switching to Tamoxifen. I was taking 300 mg of calcium with magnesium and 1000 IU of vitamin D; however, I don't think I was taking enough calcium or vitamin D. She said I should have been taking 2000 IU of vitamin D and to use the osteoporosis website to determine how much calcium supplement I need. Looks like I wasn't taking enough calcium so I've started to drink milk.

I'm getting some dental work done and then I will wait 2 months before starting the Actonel. Probably overly cautious because it's not tooth extraction but just a couple of crowns I'm having done but the Actonel side effects are scaring me. I'm curious to know what others are doing if they are in a similar situation and how they are determining how much calcium and D supplement levels.

karen1956

Walking, walking and more walking!!! My goals is 15K steps/day!!! My DH and 17 year old DD tell me I'm obsessed with walking!!! At my 6 month check up last month, my onc told me that walking as better than anything else that I could do. I also had my most recent Dexa scan last month and I am osteoporosis in the spin and osteopenic in the neck and hip. I took Actonel while I was on the AI's but stopped it when I quit AI's 5 years ago. My last Dexa scan was 3 years ago and at that time, my pcp said she would rather me take biophosphonates when I'm in my 70's (G-d willing I live that long)!! than in my 50's as they are now saying only 10 years on them and I took them for 3 years. So I need to see my pcp again and see what she says now...but I'm okay with not taking them at this time. So I'll keep being obsessed with walking!!!

Jinx27

Just came in to say Im on Lurpon (ovarian suppression) + (Anastrozole) and I have been experiencing terrible lower back pain. Went for an X-Ray which turned out clear. My Nurse practitioner suggested and MRI which found "mild discogenic degenerative disease" meaning I have arthritis in my lower back, they also found a few protrusions.

I work from home due to covid and didnt have a proper desk for months, it was terrible and I don't know how I did it. I know have a standing desk and new chair with cushions.

Not sure what to do about this back pain and new symptom of my medicine...its getting be annoying now I want to stop it all together.

Jaybird627

Hi Jinx27,

Maybe look for other threads that are more active? Not sure where to direct you to - sorry. I take many supplements to combat the AI I am on.

I use Move Free Joint Health by Schiff and Himalaya Joint Care 2x/day. And other various supplements. Good luck!

J ~

karen1956

Jinx - I also have arthritis in my back - not sure if its from anything but aging. I started Prolia last year for osteoporosis. Stopped AIs years ago and no ovaries. Hope you get some relief from the pain. Agree with Jaybird, maybe there is another thread with more people regarding back pain or maybe start one. All the best.