Postmenopausal and on Tamoxifen

flashlight

I was wondering how many of us over 60 are being encouraged by their oncologist to change to a aromatase inhibitor and why. I have been on Tamoxifen because I have osteoporosis and feel I am doing okay on this drug or at least dealing with the ups and downs. I really don't want to change to anastrozole. I have just recently changed my MO and hospital. She had my frozen lumpectomy retested. My diagnosis changed to PR- and I learned I had DCIS near my chest wall that she feels radiation took care of. I have read the studies. What are your thoughts?

Beaverntx

flashlight, I had the opportunity to make the choice between Tamoxifen or an AI. After doing some reading/research, I chose Tamoxifen in spite of being many years post menopause. The reason: osteopenia for more than ten years, stabilized but not gone. Not interested in moving to osteoporosis of I can avoid it. I would stick with the Tamoxifen, unless the doctor can provide a highly compelling reason to change! It should be your choice.

flashlight

Beaverntx, Thank you for your reply. So far no compelling reason was given.

Veeder14

Hi flashlight,

I decided on Tamoxifen because I already have severe osteoporosis. My MO was ok with that. I did seek out a second opinion, that MO recommended taking AL indicating it works better on ILC. After Tamoxifen giving me a real thick uterine lining within 4 months of taking it, and sort of being pressured into getting a hysterectomy (surgery I didn't want) in order to continue taking Tamoxifen. There's no way I'm switching to an AL unless the Tamoxifen doesn't work.

flashlight

Veeder14, Good point!! I also had a hysterectomy this past Feb.

cordelia

I'd love to hear from others on this topic! I'm 52 and have been on Anastrozole for 6 1/2 years. I have gone from osteopenia to osteoporosis. I was really surprised and sad to hear this because I'm doing everything I can. I've taken Fosamax for 4 years. I take calcium and d. I also take magnesium and K2. I walk and lift weights. I don't drink soda and only occasionally have alcohol. My onc told me I'd have to get Prolia injections. He said, "It is what it is. Just do it." I made the appointment but didn't go.

I really want to take Tamoxifen for awhile and see how I do. He has never mentioned this possibility. I'm getting another opinion after being with this guy for 7 years.

Has anyone switched to Tamoxifen, and if so, did your bone density improve?

Thank you!

Rah2464

Cordelia my bone density worsened these past two years on Tamoxifen, however, I was premenopausal when I started it. Now I have osteoporosis and am deciding which bio phosphate treatment to try. Plans were to move me to an AI once I was a full year from my last cycle. That appears to be off the table now for me I will probably have to stay on Tamoxifen a while longer. Its never a straight line in this journey, is it?

CallMeTenacious

A very relevant question! I am 66 and was started on Tamoxifen 7/20. I have mild osteopenia and had a hysterectomy last year (ovarian cancer).

The medical oncologist chatted with me at length before prescribing and indicated that she thought I would tolerate tamoxifen better than AI along with preserving/improving bone density. I was OK with this and have had tolerable hot flashes & sleep disruption as my side effects to date from the Tamoxifen.

My breast surgeon's nurse navigator expressed great surprise that I was given Tamoxifen which was not a great confidence builder. I keep reading about women being switched from Tamoxifen to AI as they are told that AI is more effective post-menopause. I've searched for research studies that back this up and haven't found anything definitive.

A key issue in effectiveness is to actually take and tolerate the medication. In my case, since I'm doing OK, I'm not anxious to make a switch unless there is some compelling evidence that I will have a lower risk of future disease. There seems to be a lot of gray area in the post-active treatment phase besides the Tamoxifen vs. AI question. How often to do mammograms, scans, ultrasounds, physician visits? There's not a lot of uniformity. I'm concerned that too much of it is physician preference instead of being patient focused -- i.e. all post-menopausal women must switch to AI. I might sleep a little better if there were some better guidelines.

I go for bloodwork and a medical oncologist visit next week. I'm interested in what she will have to say to me.

flashlight

Hi CallMeTenacious, Please let me know what your MO has to say. I was told by my BS in 2018 that Anastrozole would remove all estrogen from my body and women my age had the least side effects. Then the push to start Prolia started. After looking into all of the drugs I chose Tamoxifen. My Mo wants me to start Boniva monthly for osteoporosis and then change to Anastrozole. My insurance won't cover it and I didn't realize how expensive it is. I don't see her again until Dec.

CallMeTenacious

Hi Flashlight, I will definitely post again after I see the medical oncologist. I'm am disturbed to learn that your insurance won't cover Boniva if that's the best drug choice for you. You may want to do some research on osteoporosis. I am far from an expert and don't know your specifics but I have read confusing guidelines on how long drug treatments can/should be given and how effective they are. Also that preventing falls by improving strength and balance may reduce the risk of just living with the osteoporosis.

MamaOz

Cordelia

I also would like to know. I am soon to be 67 and am on a rim index 3 years I'm almost osteoporosis in neck area and having issues with that. I tried boniva but had jaw pain so am reluctant to take any of those drugs. However I did have a few positive nodes. Originally. Anyway. Any older gals switching to tomaxifen and having better bone scan results??

flashlight

Hi MamaOz, I have read other post where they were able to change to tamoxifen. My scan is next January and I am anxious to know the results. My sister also has breast cancer with positive nodes and osteopenia. Her MO said she has to be on a bone building drug while she is on anastrozole to prevent osteoporosis. I was on Fosamax for 3-years and had many side effects. I really don't want to try it again. I'm hoping my osteoporosis is stable. With Tamoxifen you have to be concerned with thickening of your endometrium lining and possible polyps. I had a hysterectomy last Feb. so I'm okay there.

CallMeTenacious

My medical oncologist appointment is postponed 3 weeks due to a Covid exposure. Very frustrated. My physical therapist tested positive last Thursday and I had seen her on both Tuesday and Thursday. We were both wearing masks the entire time. I tested negative on Saturday (husband was freaking so I went for the test). I want to do the right thing so am quarantining until I get clear guidance on what the best protocol is when there is masked contact of about 30 minutes.

CDC guidelines don't make distinction on mask wearing. My cancer center says mandatory quarantine and won't re-schedule until 3 weeks. MD Anderson specifies that masked encounter does NOT require quarantine. The private testing service I used said quarantine not needed.

Besides climbing the walls again (I'm still going outside and walking alone as well as working out in home gym), I now have to change both my gyn-onc and PCP visits because I carefully arranged for all bloodwork to be done at cancer center.

flashlight

CallMeTenacious, Oh No!! It is always something. I think a lot of what the CDC guidelines say are unclear that is making it difficult for the kids to get back to school. I would think MD Anderson knows what guidelines to follow. Stay safe and well.

CallMeTenacious

Flashlight, here is my promised post MO update! She is delighted that I am faithfully taking the tamoxifen, didn't even mention my bloodwork (which was OK), didn't give any indication that we should switch to anything else and to come back in 6 months. She did a reasonably comprehensive exam and found nothing. We did discuss my current UTI and she suggested Replens and prescribed a vaginal estrogen cream for dryness -- which is more than my onc-gyn did last week. I was in and out. My onc-gyn was also delighted that I'm taking tamoxifen and didn't suggest change.

I'm going to go out on a limb here and offer my non-medical expert opinion that some MO's have a bias as to which medications they prefer to prescribe. When my breast surgeon selected a MO to recommend, she told me that the woman she chose was most likely to be flexible.

As a patient, I have an obligation to myself to be as educated as possible about the options available so that I can ask the best questions and make the most informed choices for myself. For me, the tamoxifen seems to be the best choice and I continue to prefer to limit my osteoporosis risk. The most important thing is to actually take the pills and be able to continue to have a life. I would look to change physicians if I didn't feel that we were in alignment and I understand that that is not always possible. As a result of the pandemic, I am stuck with my local onc-gyn rather than the one I would prefer at MD Anderson.

I just went through the "informed choices" question in a phone call with my gyn-onc's PA regarding my UTI. If the current antibiotic doesn't work, we have a fundamental disagreement on which one to use next. She is reading the rules and wants to discount my prior experiences. Hoping that the current antibiotic works and have a fresh prescription of my preferred backup on my shelf. To further my annoyance, she acknowledged that they frequently recommend Replens and hormone cream to their patients. I guess that I don't matter in that regard at 66! Ageism!!??!!

bcincolorado

I know my MO switched me to since those can be treated and tamox can often kill you if if you develop blood clots or uterine cancer. That the main concern for me at least.

I did well with AIs but needed Prolia for bone loss. They did monitor me to see but I am off it now that I am off meds too.

Best wishes to you in your treatment.

flashlight

CallMeTenacious, Thank you for the update! I went to a Urogynecologist for my hysterectomy because I had a prolapse. I was surprised to learn what is available for dryness and vaginal atrophy for our age group. That these symptoms can lead to UTI's. I hope the antibiotic works for you.

bcincolorado, Hope you continue to do well also. I don't have any history of blood clots. I continue taking Vit E and fish oil which thins the blood somewhat.

Ladyc2020

hi VeeDer14! I’m wondering how thick the lining was for you? After basically 2 months of tamoxifen mine is 18mm. Not a good sign. Waiting for hysteroscopy in a few weeks. Also on AI instead now.