Help me decide - Letrozole vs Tamoxifen

Luckynumber47

The short question is: should I stay on letrozole and add Prolia or switch to tamoxifen?

Here's the long explanation: I've been on Letrozole for 3 1/2 years now with no noticeable side effects - except my bones. My baseline dexa in 2016 showed only a small amount of osteopenia. The next scan in April 2018 showed that I had a lot of osteopenia and a couple spots of osteoporosis. My MO didn't address it and when I pushed she suggested calcium and D3 supplements. Because of other health issues I've been kind of hit or miss taking the supplements. I just had my D3 tested and after a whole summer of being outside all day every day it's only at 47.

Since my MO seems unwilling to advise me I'm looking to you ladies for suggestions. I'm kinda freaked that it's been a year and a half since the last scan and things could be much worse. I could pay out of pocket ($480) and get another dexa now or wait until next April (when Medicare will pay). I'm sure any testing will say I need to do something for my bones, so do I switch to Tamoxifen or stay with Letrozole and add Prolia? I'm concerned about the blood clot/uterine cancer risks with Tamoxifen. The calcium/heart issues with Prolia are just as concerning. Seems like I have to decide between the lesser of 2 evils.

Please share with me how you approached your decisions.

Lucky

(Edited for typos

Veeder14

Hi Luckynumber47,

Since I already had osteoporosis when diagnosed, I decided to take Tamoxifen as I can't afford to loose major bone from the Al medication.. Even though the Endocrinologist wants me to take a bone drug on top of the Tamoxifen I decided against it. I've taken Forteo in the past, declined bisphosphonates, and took Prolia. I got some improvement in bone density from the bone meds however the issue with dental is stopping me from taking them again. Last month I had another dental emergency and needed immediate treatment. If I had been on Prolia/Bisphosphonates I would be in the same situation as in the past, no dentist would treatment me until off the drugs for several months. Can't deal with that again. So sticking to Calcium, Vit D, exercise for now.

Georgia1

Hi Lucky. Age is a factor; I'm 61 and if you are on Medicare I'm guessing you are 65+. So I will say first that at our age I strongly suggest you make an appointment with an osteoporosis specialist and not rely on a cancer doctor for advice. My own story is that I already had osteoporosis when I was diagnosed with BC, so have been on Tamoxifen from the start. But some people process it well and some don't, so I wouldn't switch from an AI without a genetic test to see which category you are in. And with osteopenia, the best place to start is indeed with the basics: exercise; calcium-rich food like low-fat cheese, yogurt, and milk; and vitamin D supplements consistently. Hope that helps.

Luckynumber47

Thanks you guys, that really helps. My dr actually just responded to my email and said to wait until my April scan before making any changes. She said to exercise as much as I can, that it really helps. So it sounds like she agrees with you. I just didn't want to feel like I was sticking my head in the sand and ignoring a problem that is only going to get worse.

I'm meeting with a new MO next week (my original is moving away) so I will have the benefit of a second opinion. I really don't want to start Prolia. Seems like adding another drug just takes me deeper into the medical establishment and farther away from being a healthy person. Does that make sense?

Georgia1

Luckynumber 47, that makes sense to me. Every drug has risks as well as benefits, so I try to start with the basics first (diet and exercise) then the first-round, most proven drug. Hope your April dexa scan brings good news.

Luckynumber47

And the question that keeps rattling around in my mind is about whether Tamoxifen (if I metabolize it) won't be just as good as Letrozole without having to add Prolia.

I already lead a pretty active lifestyle when the weather's nice, trying to landscape my sloped yard, shoveling, carrying buckets of rocks, etc. I'll have to add in some new activities now that the weather's turning. And I'll try adding in some yogurt today. I've had many months of some weird intestinal issue so I'm careful what I eat. It's tough getting old!

SSInUK

Bisphosphonates can be really easy - I have 6 monthly infusions and after the first one there are zero side effects. They have the advantage of refusing recurrence by up to 5% in hormone positive women: just a thought:

Wereflyn

I need some advice. I am 59 and have been on Letrozole since February 2019. I felt really good walking up to 5 miles every day. Then I had my final reconstruction and boom my joints began to hurt. I walk like a little old woman when I wake up. Now if I sit for more than 30 minutes it is hard on my ankles, knees and hips. Progressively getting worse as I gain weight by non activity even though I don’t eat a lot

I was diagnosed with osteopenia at the same time as my BC and am strongly considering changing to tamoxifen. My MO has told me she is willing to change medications if I want but I haven’t seen her since the side effects worsened.

Have anyone had a similar experience and all advice is definitely welcome. Thanks

AliceBastable

I've been on Tamoxifen for almost a year. My MO was going to start me on an AI, but I'd had massive dental work earlier last year and didn't know if there would be more. I was also approaching a silly meltdown over the damn pills - probably cumulative emotion after a year that included my mother dying, the dental mess, a lumpectomy and re-excision, a radical nephrectomy, and 33 radiation zaps. I'd been pretty stoic, even cheerful, up to that point, but for some reason the pill decision had me almost in years. My lovely MO looked at me and said "Tamoxifen it is!" When I mentioned it to my BS, she said it actually helps with bone strength. When I had a Dexa right before the breast cancer adventure, I already had osteopenia and one area of osteoporosis. And since I'd already had a hysterectomy a decade earlier, I didn't have to worry about that issue, plus my PCP already had me on low-dose aspirin.

Luckynumber47

Werefly, do you know what brand of Letrozole you’re taking? I’ve always taken Teva because it has the fewest fillers. I’ve had bouts of stiffness but they usually resolve after a few weeks.

My new MO said that post menopausal women have a slight increase in blood clots on tamoxifen so I think she’s leaning towards keeping me on Letrozole and adding either Zometa or Prolia. I guess time will tell.

Wereflyn

Thank you Lucky and Alice for your comments.

My RX bottle just says Letrozole and are little burnt orange pills. I've always had low cholesterol test results and would prefer to take aspirin than yet another prescription. My bone density results were worse than my 83 year old mother's and she has been diagnosed with osteopenia decades ago so I'm worried about the bone density as well as the joint pain

I'm concerned that I won't be able to have dental implants should I need them in the future. My mother took fosamax for a short while and had difficulty with her implants.

Thanks again

Daylightdancer666

Im on lethzole i didnt have sny problems wheb ibhsd the sccord brsnd now imnin Glenmark nynjointsrsre painful can't bend mmy knees or go and go to bend down nexr someone like rhe other day i benr ro sir nexr ri nt friends daufgtees high chair was painful while in thst position saying that got nyrdirsrnscsn backnsince diafnisis snd my tumours sheabk deposits in liver non visable xxxx

DIaneinPA

I am in the midst of the same decision making process. I start Anastrozole only three weeks ago. Side effects are not terrible, but not pleasant either. Hands ache in morning, knees too, biggest problem is fuzzy brain. Some days I feel terrible (especially when I haven’t slept well), other days more or less ok. More fatigue. But my most important concern is bone thinning as I already have the beginning of osteopenia in femoral neck. MO has prescribed a Prolia shot every six months but I don’t want to go down that road. I am doing yoga 5 days a week,silver sneakers with 5 lb weights 3 times, walking on nice days and taking quality calcium/ d3/ magnesium/boron supplements—but afraid it won’t really be enough in the end to counteract the no-estrogen environment of my body. Am seriously considering switching to Tamoxifen and will discuss with doc end of this month

Luckynumber47

This is so interesting to me that some drs start Prolia at the first sign of osteopenia and others wait much longer. Both of my MOs said to just keep taking the calcium/d3 supplements even though my dexa showed the beginning of osteoporosis. So why not go to Tamoxifen to protect the bones. Why just keep adding more drugs in? My new MO seems to prefer Zometa over Prolia, but Zometa is a bisphosphonate and I thought they had more side effects than Prolia. Grrrr. I've totally understood every step of my treatment until now but now I'm kind of stuck in an ever repeating circle. Maybe all will be made clear when I have my next dexa in April.

DianeinPA, I have a friend who's baseline dexa showed osteopenia and she's been on Tamoxifen since the beginning, almost 3 years now. Her 2nd dexa showed only the tiniest bit of improvement but at least no loss. Her MO is keeping her on Tamoxifen. My MO did say there is an increased risk of blood clots or uterine cancer in postmenopausal women on Tamoxifen. Risks in everything.

Moderators

Dear DianeinPA,

Welcome to the BCO community. We are sorry for what brings you here but so glad that you reached out to our members for their experiences. We hope that you will stay active and connected here. Please let us know if there is any help we can provide.

The Mods