How do you decide about hormone therapy after DCIS with severe side effects?

Hi Amber.. I am 67 now and have had all the same prognosis as you.. I didn’t have a hysterectomy, just the surgery, radiation and now Letrozole..I have been on it for a year and a half. I absolutely hate it! I have discussed with my oncologist how much joint pain I have plus dizziness, off balance, terrible insomnia, low appetite, I think can I make it 3 and a half more years? So I go off it for a week sometimes 2…I feel like myself again! I have been taking magnesium glycinate which has helped so much..calms the body and anxiety to help sleep..I get tested every 6 months with ultra sound or mammogram which is fine to me..so far it has been clear🙏 They tell me there are other drugs to try but what I read the same symptoms or different ones..I really don’t want to have other symptoms.. I hate taking drugs. My family thinks I should go off of it since I am being tested every 6 months.. they don’t think they help my quality of life, want me to enjoy my life and not be miserable.if the next test shows something then it will be a different conversation… When I don’t have a lot going on I take it for awhile and go off if I want to be myself and enjoy..I know that is not right but I feel better.. I too pray to God for guidance and with my faith I hold on to that..I don’t want to sway you from what we are told to do but that is my story.. God Bless You as you navigate this terrible disease.. 💐🙏

Thank you Rebecca I appreciate you sharing your experience. Helps me to know I’m not the only one who thinks this way. I’m really changing my eating habits and that’s a whole other story.. I’m trying to live a healthier lifestyle but that’s hard as well. I’m 43 going through menopause but thankfully I have a pill that helps with that. Overall this whole cancer/after cancer just stinks! 😠😫 I’m an only child and my mother was diagnosed with stage 4 breast cancer at 46 and passed away at 49 so that also puts fear in me and I think a little PTSD I took the genetic testing and I don’t carry her BRAC gene so that’s good (mine is a hormonal cancer) but I took care of her the best I knew how but had to watch her fade away a pass and that was very difficult to watch. That is why I have been on top of my mammograms and trying to live a better lifestyle. I asked God “I dont care how I die( I know where I will be) just please don’t give me cancer” but I guess it was a wake up call to change my lifestyle. I take my medication in the morning and feel guilt and anxiety when I don’t take my AI, but I just don’t want the side effects. My family tells me not to take it as well they say throughout my journey the pill has been the worse part for me..so I can relate with you on that. I see my oncologist next month I’m sure he’s not going to be happy with me for not taking it. I just pray that it doesn’t come back and if it does then I will have to deal with it then I guess..Thank you for listening and responding I appreciate you. God Bless you your in my prayers 🙏

Amber thank you! You are very young to go thru all of this..I am very sorry about your Mother.. I did a genetics test because I didn’t want to know my daughter could get it..it is estrogen positive.. she won’t be at risk, I pray..my mom’s sister died of BC. Keep up the testing and enjoy your life.. My step daughter told me that her friends were told that it lingers in your body for a few months so I am going with that..I will take it but not always everyday. I too have changed my eating habits and feel that is a positive component plus exercise… Be well 💐.

Making decisions about hormone therapy when facing severe side effects is one of the most challenging aspects of post-treatment life, and these concerns about quality of life versus potential benefits are completely understandable. Many patients in this community have navigated similar difficult conversations with their medical teams about treatment tolerance and have found it helpful to seek second opinions from other oncologists who might offer different perspectives or alternative approaches to managing side effects. The fear and uncertainty about these decisions is something many here can relate to, and connecting with others who have faced similar choices might provide valuable insight and support during this difficult time.

I would ask the oncologist why he/she thinks you are at such high risk.

Amber. I had the same DCIS stage 0. 4mm. Lumpectomy and 5 rounds of targeted radiation. Last year. My drs. seem to listen. No issues on mammograms. Had one Monday. I stopped Letrozole and my statin end of April. Needed a break as I was crippled. I feel normal whatever that is. Leaving for a work trip this afternoon and I need to be on top of my game. I am 74 BTW. I will try Letrozole again when I return. I think I will better assess the issues from a fresh perspective. Mom passed 2 yrs. ago just shy of 97. Neither she or her 4 sisters had BC. Their mom did. I am the outlier.

Thank you all for your feedback, advice and suggestions I will definitely take them into consideration. It’s so nice to have this platform to share my experiences with others who are facing similar challenges. Sometimes it feels so isolated but having people on here who are going through what I am is really helpful and I appreciate it. I have a big family although I’m an only child and my mother has past, who are supportive with their own recommendations but they haven’t walked in my shoes and on here it’s so nice being able to connect with people who are or who have and share and give support. I’m very grateful for this community 🫶 Stay strong and God bless 🙏

I had the ER/PR positive and HER 2 negative cancer in 2022 at 12:00 location. Rear margin was 1 cm while 2 is preferred. I did double mastectomy to avoid chemo and radiation. My recurrence risk was intermediate. I opted not to take AI inhibitors and went the natural route. My surgeon said chance of local recurrence following mastectomy was 1%. Unfortunately it came back right above the scar in 2025 and I had another surgery and 33 radiation treatments, and now I'm taking the AI inhibitors. I'm post menopause and I've tried Anastrozole (had night sweats that kept me awake at night) and Letrozole (hot flashes and headaches). Now I'm on Exemestane and still have hot flashes but it's the most tolerable.

Thank you Carol for sharing. I’m so sorry that this terrible disease came back and that is my biggest fear! I don’t want to go through this again but these AI medications are awful 😫 I’ve done a lot of research on this and had to be my own advocate. More than 30% quit the medication within the 1st month because of the horrible side effects and in my case I have a 3-5% of a recurrence and that goes for others who have had a mastectomy as well. The percentage of it coming back of course depends on your stage, margins, family history, weather you had radiation etc the percentage is the same a low recurrence. Sometimes I wonder if doctors over treat certain conditions? Of course they say “no”.. With a strict diet, exercise and lifestyle changes this can be treated. I’m also looking into homeopathic remedies as well There is so much that goes with this diagnosis. I think that of course everyone has their own journey but I also believe that your body is your choice and that doctors can be intimidating and “old school “ when it comes to treatment. Protocol..No one tells you about the chapter after cancer, the doctors tell you what is going to happen during treatment but they fail to tell us about after treatment and it’s hard to navigate and finding the “new you” doctors have installed fear in me but I am a God fearing woman and in my heart I feel like I did what I needed to do to rid myself of this disease and I have faith. If it comes back years down the road, I will navigate it then but until for now I feel like my quality of life is more important and valuable. Thank you for sharing and your advice God Bless you and heal you from head to toe in Jesus holy name Amen 🙏