Stage 1 IDC without any hormone treatment after surgery?

dtad

Hi everyone. I refused aromatase inhibitors from the start due to poor health at the time of diagnosis. I have multiple autoimmune disease with poor QOL. Thankfully I just hit the 5 year mark. This was the right decision for me. I'm not advocating it for anyone else. We all have to make our own informed decisions. Good luck to all navigating this complicated disease.

Georgia1

Hi BCboard63,

I'm going to chime in with the others who recommended at least trying Tamoxifen. It reduces your recurrence risk, builds bones, and most women find the side effects quite temporary. You get results even with two years, five years is better of course. I am 61, with osteoporosis, and also take Fosomax for the osteoporosis. In terms of your question on supplements, I only take calcium and vitamin D. Side effects of Tamoxifen can be quite minimal in post-menopausal women and they certainly are in my case.

CTMOM1234

Coming back on here to pay it forward, so appreciative for those who were here for me when I needed guidance and support during my bc journey, and I was reminded of that when today I was private messaged by someone who somehow found my old post(s). I've been where many of you are: annual routine mammogram revealed questionable micro-calcifications, no family history, hematoma after biopsy, surgeon trying to steer me to mastectomy, genetic testing for BRCA1 and 2 (thankfully negative), more stress when sent for MRI biopsy of other breast (thankfully nothing), oncology appointment regarding tamoxifen, etc. And not seeing too many survivors return to these boards.

I will be 55 years old on Monday. Ten years ago, I spent part of my 45th birthday on a radiation table getting zapped. I am a private person and suffered in silence but turned to these boards to help get me through this. So Happy 10 years to me, and wishing you all light at the end of this very scary tunnel and that you come back to provide comfort to others. Please pm me if I can be of help, many did the same for me a decade ago.

KIDI919

Good news CTMOM1234!!

BCboard63

Hi dtad,

Congratulations on the 5 year mark and thank you for response here! I am very happy to find your situation is quite similar to mine. Your experience is a very encouraging news to me.

BCboard63

Hi Georgia1,

None of my MOs recommended Tamoxifen. I asked MOs about this and she said AIs are more effective.

BCboard63

Happy 10 years CTMOM1234! I totally agree with you that these boards are very helpful.

VeeHow

I told my husband I would rather have quality of life over quantity. I don’t want to take the AI but might try it. With the health problems and medications I take I doubt I’ll be able to continue it.

UpstateNYer

hello VeeHow,

I have taken anastrozole(arimidex)since last September. I have had zero side effects on it. Hoping the same for you. There are different choices out there. If one gives you se's, you could certainly try another. Best of luck to you.

VeeHow

Can you go for a second opinion? Or get another Oncologist

UpstateNYer

hi VeeHow,

Of course you are free to get a second opinion. I think you should be open to at least trying an AI. It is the standard of care post treatment. I don't know your health situation, however. That is probably why you should perhaps get a second opinion. Best of luck to you. Pat😊

moth

just a point of information, for hormone positive bc the risk of recurrences, local or metastatic, after 5 yrs does not go to zero. The risk continues to persist (forever from what I saw on the charts till forever)

TNBC is more likely to recur in the early yrs so tnbc pts can generally breathe a bit easier after the 5 yr mark, but this is not the case for hormone +. This is why some people stay on hormone suppression past the 5 yr mark

jcp

Georgia1 hello. I was on tamoxifen for about a year when diagnosed and then they switched me to femara which I took another 9.5 years. The dr took me off it about two years ago due to increased osteopenia and osteoporosis that was caused by the Femara. My bones have gotten better since being off of it but I did not want to come off as I have felt like I have no ca prevention. I saw that a some people are put on tamoxifen even if postmenopausal. I never knew that was a possibility. Ofcourse I am now postmenopausal that's why they had moved me to femara to begin with. I was dx at 42 premenopausal. So tamoxifen does not hurt the bones much? I have a scare right now with my lung and I have a CT tomorrow to hopefully find out that the calcifications they saw in chest xray are benign condition or benign nodule and also not lung ca . If you don't mind please say a prayer for me for tomorrow. Thank yo, JCP

JoniB

I've been on Arimidex (name brand) for four years. The only true side effects I have are to my appearance. I feel that I look older due to the loss if estrogen, I have an Arimidex belly (I'm a size 4 with a stomach), and my hair is fine and thin. I do take Prolia for bone loss.

Georgia1

Hi jcp. Tamoxifen not only doesn't hurt bones, it actually helps increase bone density. So since I was stage 1A, my oncologist was perfectly fine with prescribing T. If you've been on an AI for nine years tho, it may be perfectly fine for you to stop taking drugs; your oncologist would be able to give you pros/cons. And yes, I will be wishing the best for you tomorrow.

BCboard63, yes, the evidence is that AIs are more effective than Tamoxifen. But for women with full-blown osteoporosis, sometimes Tamoxifen is the better choice. That's where I landed. And when you're post menopausal, side effects can be mild to nonexistent.

jcp

Thank you, Georgia1! I have about 10.5 years in total on both Femara and Tamoxifen, with only about a year for Tamoxifen. I just really dont know why my onc didn't give me the option of T. I was really upset coming off the F bc I felt like I had no protection at all. I read two stories today where two women have been on Tamoxifen for 19 and 20 years! Idk. I do know that I've got to get through this tomorrow. Very afraid. It was difficult to get scheduled so I had to keep waiting to get it done, and I've just had too much time to worry. Sometimes I guess you are better off scheduling and going quickly. I will address this with my onc of I can get through this tomorrow afternoon. Thank you for responding! JCP

jcp

why do my posts always say private at top left? I guessing bc I hit post a reply?? Idk JCP

jcp

Georgia, why do my posts keep saying private whether I hit "post a reply" or not?

jcp

CTmom, why do my posts always say private at the top whether I hit the post a reply or not? Thx JCP

KIDI919

JCP I know is an old post but i think you need to change your settings in Settings under your profile