Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

Broken bones from Aromatase Inhibitors and joint replacements

Options
suzare
suzare Member Posts: 33

I haven't been able to find any information about the possibility of broken bones when on Anastrozole and have joint replacements. My last bone scan was five years ago and was diagnosed with Osteoporosis, and am 4 times more likely to have broken bones. I am scheduled for another scan next week, but don't expect it will be any better. Both of my knees and both of my hips have been replaced with Titanium prostheses, and I am trying to find out if that would protect me from breaks or be more disastrous. Do any of my Sisters in BC have the same situation?

«1

Comments

  • minustwo
    minustwo Member Posts: 13,082
    edited January 2022
    Options

    suzare - I'd recommend seeing an endocrinologist. That's who handles my osteoporosis now. You can discuss it with your MO too, since there are several shots &/or infusions for bones. I don't know how old you are or what insurance you have, but I have a DEXA scan every two years. Insurance generally pays for it more often if you have osteoporosis.

  • suzare
    suzare Member Posts: 33
    edited January 2022
    Options

    Good morning Minus Two, and thank you for the reply. My "MO" has totally dropped the ball in my case. I saw her just once three months after surgery, and that was basically to give me the Rx for Anastrozole. When I asked about the side affects, she told me not to worry -- most women don't get any. I am transferring my care to a different hospital and will be seeing a new doctor tomorrow. I have had 31 joint surgeries, and the bone leeching the AIs cause have me very concerned. I will definitely consider an Endocrinologist. I'm glad you have someone helping you manage the Osteoporosis. All the best to you ~ Susan

  • specialk
    specialk Member Posts: 9,222
    edited January 2022
    Options

    suzare - I am assuming you are post-menopausal since you have been prescribed an aromatase inhibitor (anastrazole), correct? If so, have you considered switching to Tamoxifen? The reason would be that in post-meno women Tamoxifen can potentially build bone, and for those who already have issues with bone density it is a choice that should be considered. Tamoxifen has some other risks so that should be discussed as well to see if you are a good candidate. Has your orthopedic doc weighed in on any of this?

    I was osteopenic, but stable, prior to diagnosis with breast cancer - mainly due to a total hysterectomy while firmly pre-menopausal. I also fit the typical criteria for osteopenia/osteoporosis, so may have developed it anyway. Within six months post-chemotherapy and a short time on letrozole my bone loss was markedly worse, and I had coincidentally a DEXA done just before surgery so I knew where I stood prior to treatment. I did start on Prolia at that point and it did a great job of restoring my density back to "normal" which was a great response. I stayed on Prolia for 6 years and stopped it when I stopped letrozole. I had a DEXA done about a year later and I did not lose any of the regained density. I am due for a DEXA now so I will be curious to see what my status is.

    You are in a precarious position - you clearly have bone/joint issues, but need a medication that has bone impact. It is a dilemma, and I wish you the best in finding a solution that causes no further problems for you.

  • margun
    margun Member Posts: 385
    edited January 2022
    Options

    specialKey. Did you take antihormomals for only 6 years? I am on letrozole for two years now and already have osteoporosis. I am on pills to fight osteoporosis but I cannot wait until doc says I do not need anymore letrozole. Plus my wbc and rbc are below normal and I do not know if I must blame letrozole as well

  • suzare
    suzare Member Posts: 33
    edited January 2022
    Options

    Hi SpecialK, I am post-menopausal since I was 34 (69 now). Congrats on getting a good report on your bones -- may it continue forward. I was prescribed Anastrozole because I am post-menopausal. I am only on day 12, so I have a long way to go. I did call my Orthopedic surgeon, and he had no input regarding having joint prostheses and AIs and tossed me back to the MO. I have lots of other hardware because of the multiple surgeries also. In my research, I found two demonstrations of a prostheses totally shattering the femur, which cannot necessarily be repaired, and if possible, it would be up to a year in rehab trying to heal and walk again and also noted death in some cases. I'm not trying to alarm anyone who may be in the same situation I am. I hope my new MO will offer some guidance on the matter. Breast cancer is a beast.

  • specialk
    specialk Member Posts: 9,222
    edited January 2022
    Options

    margun - I took aromatase inhibitors (letrozole and anastrazole) for 7.5 years, Prolia for 6 years. I was on letrozole for a while before I started the Prolia, then discontinued the Prolia but was still taking letrozole for almost another year. I would likely have continued but I needed a jaw surgery which was not connected to any medication related problems, but my maxillofacial surgeon wanted me off anything that could impact bone. My medical oncologist indicated that I did not need to re-start letrozole after the healing time from the surgery, citing some studies that show little benefit between taking them for 7 years or 10 years. For your low blood counts - several things to think about. Most ranges on lab reports are formulated for adult men. Women, particularly anyone on the small side, can have values low in the range, or below, and that is normal for them. Normal aging also can contribute to lower lab values over time. Have your values been dropping over time, and by a lot or just a little? I am no longer on letrozole, have not been for several years and also have low RBC/WBC/platelets - like, below the range low. However, I had values inside the range the whole time I was on letrozole once I had recovered from chemo. I have always had low hemoglobin, but I have several petite friends who also have low blood values and have not been diagnosed with breast cancer or taken any of these drugs. My oncologist is aware of this, but not overly concerned. I will see him for my annual appointment in early March and plan to speak to him again about this depending on what my labs say right before. What does your oncologist say about your lab values, and is that doctor also a hemotologist? You should definitely ask his/her opinion.

    suzare - I would ask about Tamoxifen, in your shoes. Even though you are post-meno it is not an inappropriate medication choice, and I have seen a number of people on this site with bone related issues use Tamoxifen for that reason. It is worth a conversation. I sure am sympathetic to the position you are in, kind of between the proverbial rock and a hard place, right? Breast cancer is indeed a beast!

  • margun
    margun Member Posts: 385
    edited January 2022
    Options

    SpecialKey-thank you for answering. I will see my oncologist next week about your lab values, and i do not know if he is also a hemotologist. Last year only rbc was low but wbc borderline 4.5 now 3.9. I am 5’6, so not really petite. But I am surprised that you know ladies even with no bc have lower than normal wbc and docs are not concerned. I posted in several threads about my low wbc and only 3-4 ladies told about a similar experience.

    For osteoporosis I am taking Risedronate if it does not do difference we will go with injections. The cancer is a beast and I surprised that a nurse told me that it touches 50 percent of population in some point of life. I hope she is mistaken. It is difficult to imagine that.


  • suzare
    suzare Member Posts: 33
    edited January 2022
    Options

    So many concerns about taking Tamoxifen vs. Anastrozole or other AIs. For me, the possibility of getting Uterine Cancer looms large as my Mother and one of her sisters died from it. It's just crazy how many problems arise from the medications that are trying to make us healthier. It has been a real eye-opener for me. I spent about an hour stomping my feet and bemoaning my fate today. Okay, I didn't really do that, but I wanted to. Winking

  • jelson
    jelson Member Posts: 622
    edited January 2022
    Options

    Suzare - You have legitimate concerns that should be addressed, you shouldn't be bounced back and forth between doctors. I am chiming in to say that I was post- menopausal and diagnosed with uterine cancer 4.5 years into my 5 yr tamoxifen regimen. Indeed, although rare, if it occurs, it is most likely to be in someone post-menopausal. I had transvaginal ultrasounds several times in the first two years of my being on tamoxifen. but my doctor joined a different practice and I didn't have another until I requested an exam due to an unusual discharge and then a D&C (not an endometrial biopsy). My treatment was a complete hysterectomy and because it was stage 1a, no radiation or chemo was necessary. Maybe if we had continued being vigilant, maybe if I hadn't waited til the discharge turned pink, it would have been caught even earlier. I don't regret taking tamoxifen in the least and I think you should discuss your concerns about tamoxifen and uterine cancer with your new? MO and/or a Gyno-Oncologist.

  • suzare
    suzare Member Posts: 33
    edited January 2022
    Options

    It all seems to boil down to the devil you know and the devil you don't want to know. My head is still spinning over the possible side affects from these drugs. (and yes I know just possible) I hope there is some ongoing research that will find some alternatives to these drugs that are much easier on the women who have to take them. Scared

  • suzare
    suzare Member Posts: 33
    edited January 2022
    Options

    Hi Jelson, Thank you for the reply. I'm so sorry you had uterine cancer on top of breast cancer -- that must have been terrible for you to find out. I am starting to wonder if it's me, that somehow doctors so often either blow me off or just poo-poo me. I'm reasonably intelligent and have a very extensive medical history, so I have learned how to present myself -- what to say and do, and what not to say and do. I saw my GYN recently and requested a Pap smear due to the fact that my Mother died from Uterine cancer and so did one of her sisters at the age of 53. She asked me why I was even there and told me they don't do Pap smears any more for women my age. I was already naked in the saddle and insisted she do one any way. I saw an MO for the first time months after my Dx and surgery. I sure could have used one much sooner in the game as I had so many concerns and questions. Two weeks before I was to start on the AI, I called her twice (a week apart) to ask some questions about the Arimidex and my concern about already having Osteoporosis. No call-back. I am transferring my care to a different breast care center and will see the new doctor tomorrow. My anxiety has already been crippling. I have had anxiety for two years, but never imagined how much worse it could be. #BreastCancerisaBeast


  • rah2464
    rah2464 Member Posts: 1,192
    edited January 2022
    Options

    Suzare time for a new Gyn as well. Given your family history, new guidelines aren't relevant and by all means do the simple effective testing that will keep you safe or at least explain your risk profile so that you are comfortable with when to stop the swabbing.

    Please have a discussion with an endocrinologist about bone treatments (although a lot will say we will treat you no matter what pill your MO prescribes at least mine does. My MO thinks he is a bit full of himself) and try for a second opinion from an MO on hormone suppression. There is a poster on here named Santabarbarian who uses a medication that is very similar to Tamoxifen called toremifene. She is on it because she tolerated it better and it has less side effects. You need an MO that is willing to explore medications that will be tolerable given your other conditions. There are other SERM options other than Tamoxifen and perhaps one of those will fit.

  • specialk
    specialk Member Posts: 9,222
    edited January 2022
    Options

    suzare - eeeks! Sounds like Tamoxifen is less of an option! I will be curious what your new docs suggest and how they plan to make a way forward for you taking ALL of the factors into consideration. Good luck!

    rah - just wanted to clarify, I believe santabarbarian is triple neg so not on any anti-hormonal, I believe it is salamandra - similar looking member name - who is on an alternative SERM.

  • SupportforAmy12
    SupportforAmy12 Member Posts: 14
    edited January 2022
    Options

    Hang in ther! And thank you for being vulnerable and open about what you're going through. Day by day!

  • suzare
    suzare Member Posts: 33
    edited January 2022
    Options

    Hello SpecialK,

    I saw my new MO yesterday. She was very approachable, very attentive and addressed all of my concerns (the ones I could remember to ask) She couldn't answer my question about having joint prostheses vs. none as far as the magnitude of a bone break was concerned. I had my bone density results from five years ago sent to her and she was alarmed at how bad they were and immediately told me to stop the Anastrozole until I get the results from the bone density test I'm having on Monday. I asked her if that would mean going on Tamoxifen, and she said yes to that. So far, the only issue I have had with the Anastrozole is nausea and now vomiting. My head is still reeling from all of the things that could happen from the Anastrozole and horrified of what the Tamoxifen can do. Ironically, my Primary care doctor had already ordered the new bone density test as it has been five years, and the results will go to her and my former MO. I wonder if the former MO would even bother to call me as she doesn't yet know she is the former.

    All the best ~ Susan

  • suzare
    suzare Member Posts: 33
    edited January 2022
    Options

    Hi SupportforAmy12,

    Thank you for your kind words and encouragement. I hope I am just being open and honest and not a whiner...haha. I hope some day soon, my head will stop spinning, and I can settle into a new normal living with breast cancer. I am so humbled by everyone's stories and think back to when I was young and so many women in my family dealt with breast and other cancers. I knew it was bad and very sad, but had absolutely no clue what they had to go through just getting diagnosed and then going through the surgeries and the treatments. My Mom died from uterine cancer and her two sisters died from breast cancer and other metastases, and they didn't have half the resources we have now. It's humbling.

  • rah2464
    rah2464 Member Posts: 1,192
    edited January 2022
    Options

    SpecialK Ooops! yes thank you. It was Salamandra. My brain sometimes

  • princessbuttercup
    princessbuttercup Member Posts: 159
    edited January 2022
    Options

    Suzare,

    Thank you for posting this question! I've been searching for information about osteoporosis and AIs.

    I've also had AI problems, and am concerned about osteoporosis after developing severe forearm and wrist pain with Letrozole and Aromasin. I had to push for a dexascan to recheck bone density as my last scan was only a year ago. I've made an appointment with a hand and arm specialist because I can't use my left hand and arm without pain.

    My MO says that my experience is "not typical," but here I am with these symptoms. Probably going back to Tamoxifen, even though I had a hard time with that, too (uterine bleeding while on Tamoxifen), and in the end decided on a hysterectomy. I don't regret that decision, but I'm 61 so good riddance to those organs.


  • suzare
    suzare Member Posts: 33
    edited January 2022
    Options

    Hi PrincessButtercup (love the name)

    I wonder if our heads will ever stop spinning when it comes to Breast cancer treatment. Did you get your results from the Dexa scan? I don't know what we're supposed to do with all of the harmful side effects of the AIs and Tamoxifen. I'm pretty sure I have PTSD from everything associated. My husband is begging me to stop researching everything BC, and although I keep discovering more and more alarming information, I still feel better armed to face whatever may come as I won't be shocked if/when they happen. There is so much "If this happens, do this or don't do this, or maybe try this". I have yet been able to find out if a potential hip fracture would be more protected with the hip prostheses, or more disastrous. I guess no one has ever asked the question before. I'm so sorry you had to have a hysterectomy due to Tamoxifen, but I suppose you can look at it as one less place to get cancer. Have you seen the hand and arm expert yet? Let us know what you find out if/when. I'm having the Dexa scan on Monday -- I don't expect it to be better than five years ago, just how much worse, I suppose.

    All the very best to you Smile

  • princessbuttercup
    princessbuttercup Member Posts: 159
    edited January 2022
    Options

    Thanks, Suzare,

    Well, I was overjoyed to get the hysterectomy done! I had decades of pain from fibroids, and the pathology from my surgery showed that I also had ovarian cysts and some other issues that explained a lot. I was surprised that I had to practically beg my GYN for this surgery. I don't know why doctors are so reluctant to do it. I was beyond ready.

    I haven't scheduled the dexascan but will call Monday. In the meantime I have the appt with the hand center on Tuesday. They said they will do some X-rays on the wrist and arm.

    I had a Grade 3 tumor, so my MO really wanted me to stay on the AI. But I need to get this hand/arm situation sorted out first. I think a few weeks off should be ok. :)

    I'm trying to balance the long term risk of recurrence (17% if I don't continue with the anti-estrogen meds) vs my shorter term risk of diabetes. It runs in my family, and my A1C is trending up with this weight gain from these drugs. My MO seems unimpressed with that info!

    I am so sorry for your hip issues, and I hope you get some answers from your scan this week. Let us know!

    Take care,

    Buttercup

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2022
    Options

    i am an orthopedist’s worst nightmare or best advertisement for a bionic woman. I am also a gyno’s best patient because during my four years on Tamoxifen, I had multiple D&Cs due to polyps. I also had cervical thickening. I lost track of the number of D&Cs that I had. Completing four more years of Letrozole, my oncologist did the BCI genetic test on me and said, you are done! Amen.


    during those 8 years, Including being treated the first three with Zometa, I broke my foot and had numerous limb procedures. Wrapping up my eighth year of treatment, I had my right hip replaced three months after having a benign 5 cm myxoma tumor removed from my left thigh


    after completing treatment, my misery continues…Had two hand surgeries and then broke my wrist a week after getting out of my hand brace for my second hand surgery!


    presently, I am working on my teeth. Had two implants and am counting the months until my dental issues are resolved….then….I will try to figure out when to squeeze in a left hip replacement.


    this month, twelve years after being diagnosed with breast cancer, I celebrate my 65th birthday! I began being covered by Medicare on January 1st. Hooray!


    bottom line….don’t despair! As Sarah Vowell would say…It could be worse….


    lastly, my team was compassionate, intelligent and wise. That made all the difference in the world. I trusted them. Let them make the decisions for me. I realized early on, no matter how much I read and educated myself about all of my issues, I would never have the EXPERIENCE that they all had. And, that made all the difference in the world. For me, the hardest decision I made was to let go of the decision making and then let them decide what was best for me. So far, so good….looking back, I would not have done anything differently.


    for sure, you need to be your own best advocate…but you also need to know when to trust your gut and put yourself in the hands of physicians whose judgment you trust.


    i wish you all the best.




  • princessbuttercup
    princessbuttercup Member Posts: 159
    edited January 2022
    Options

    voraciousreader,

    You’re an inspiration to go through all of that and stick with the meds! And it sounds like you have a great team. I wish my team would talk to each other!

    I also seem to have to prove to my MO that Letrozole and Aromasin have been affecting my bones. She wants me to treat the pain with Cymbalta, but when I looked that up I read that SSRIs can contribute to bone loss.

    Happy Birthday and happy Medicare day!

  • suzare
    suzare Member Posts: 33
    edited January 2022
    Options

    Hey Princess Buttercup,

    Did you get your dexascan scheduled? And how about the wrist and arm xrays? Sometimes I feel like the soldiers are leading the Generals with getting the care we know we need. I hope you're getting the answers you need. March on! Smile

  • suzare
    suzare Member Posts: 33
    edited January 2022
    Options

    voraciousreader,

    First of all -- Happy 65th Birthday! I hope you did something wonderful to celebrate (especially getting on Medicare!) I am stunned to hear what you went through! So many broken things! I so hope you are doing well after all of that, but with still so much more to go. Sheesh, I wish these drugs would leave at least one thing alone -- teeth would be good.

    I appreciate what you said about your team and the faith you had in them. Unfortunately, my experience wasn't quite that good. I have recently switched to a new hospital and saw the new MO a few days ago and I liked her a lot. She was stunned to read the results from my most recent bone density scan from five years ago and immediately told me to stop taking the Anastrozole. It's all so weird as I was so scared to start taking it and was upset to stop taking it as it most likely means Tamoxifen now. I have a dexa scan today, so we'll see how that goes.

    Your attitude in all that you have been through and will go through is inspirational. I will tell you that in my experience, the hip replacements were the easiest surgeries to rehab from. They hurt like any surgery, but recovery is a lot less time and discomfort. Best of luck when you get yours done.

    ~Susan

    #BreastCancerisaBeast

  • specialk
    specialk Member Posts: 9,222
    edited January 2022
    Options

    rah - that is all of our brains! No worries!

    I would encourage those who have posted on this thread to report back as you proceed through imaging and doc appointments - you all have raised questions that I am sure others have too - this is valuable info.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2022
    Options

    thanks for the birthday wishes. I celebrate all year long. Waking up every day, getting out of bed and being vertical most of the day is a blessing that I never take for granted. I am also grateful fo having comfortable shoes.


    As for my birthday gift… it arrives later this year….in early March. Another grandson….


    hope you all enjoy life between all of your doctor appts. I know how grueling it can be. Just take it one day at a time…..


    stay well and safe!

  • suzare
    suzare Member Posts: 33
    edited January 2022
    Options

    Hello voraciousreader,

    Your positive attitude is contagious and inspiring. I hope your birthday was a fun one. Looking forward to a new grandson probably topped any other gift you could have, with the exception of comfortable shoes -- they are priceless Winking

  • princessbuttercup
    princessbuttercup Member Posts: 159
    edited January 2022
    Options

    Reporting back after my appointment with the hand doctor. I was so sure that I had a wrist or forearm fracture as a result of aromatase inhibitors during the past two years.

    Well it turns out that I have a condition called De Quervain's Tenosynovitis along with severe arthritis at the base of my thumb. A new splint has made a big difference, and I'm icing and using Aleve for pain. I plan to return to Exemestane after talking to my MO soon. I have a dexascan scheduled for next week but I maycancel that now that I know what's going on.

    No idea if the situation is connected to the AI's but it can be in rare cases, I was told. More likely is that I just overused my left hand. It would be better for me to stick with Exemestane than to go back to Tamoxifen, which can cause blood clots and doesn't work well with another med I take.

    Anyway, no broken bones here!

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2022
    Options

    princess! That's what I had! I had two procedures. The first one was to scrap away the arthritis. That is the more conservative of the procedures. A few months later, the orthopedist removed some tiny bone and where the bone was…rolled up a piece of muscle and placed it where the bone previously was and created a shock absorber effect. Ahhhhh….what relief!


    i hope the rest and anti-inflammatories work for you…but if the pain persists….I whole hardily recommend either or both procedures. I also had Mommy's Thumb and I got a procedure for that too!



  • whatjusthappened
    whatjusthappened Member Posts: 178
    edited January 2022
    Options

    Hi all, I found this thread while searching for people's experiences with Prolia. I started on Prolia at the same time I started AI's, due to my baseline Dexa showing osteoporosis. I have a lot of problems with my joints, especially my hips, and I am looking at at least one hip replacement in the near future. Anyway, I just had my 6th Prolia injection this week and am suddenly having a lot more pain in my hips and thighs from it. It's really making me question whether or not I want to stay on this drug. I had a follow up Dexa last year that showed my density hadn't improved at all. But it didn't get worse, so that's something I suppose.

    SpecialK, you said you quit taking Prolia after six years. Did you have any rebound problems after quitting? The stuff I've read about stopping Prolia can be pretty scary.

    I am starting Tamoxifen next week, not because of the bone density but because I can't find an AI that I can tolerate. My MO said Tamoxifen shouldn't aggravate my joint pain as much, and since I had a hysterectomy with my oophorectomy, I don't have the uterine cancer risk from it. Suzare, that is such a hard decision you are faced with. The only thing that really scares me about Tamoxifen is the risk of blood clots, since there is a family history of stroke. However, the possibility of Tamoxifen helping my bone density would certainly be a nice bonus.