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9 months agoHas anyone decided against the recommended endocrine blockers (due to side effects or for whatever reason) and have instead sought out other risk-reducing strategies?
Accepted Answer
This is such an important question that many people in similar situations wonder about. Making decisions about endocrine therapy can feel overwhelming, especially when weighing potential benefits against quality of life concerns. Many community members have shared their experiences with exploring lifestyle modifications, discussing alternative monitoring approaches with their doctors, or finding ways to better manage side effects. These conversations with others who understand the challenges can be incredibly valuable when working through these complex decisions with your medical team.
3+ patients found this helpful
Community Member
6 months agoI'm relatively new to taking the meds,took Anastrozole for 3.5 months, did great with hardly any side effects then boom had severe joint pain that caused me to fall 3 times in 1 week. I tried hand therapy exercises, frequent exercise but my doctor switched me to letrozole. Before I started the letrozole, it took 4 weeks for the anastrozole effects to be 80% gone. I been on letrozole for 2 months with very little side effect. There are so many risk reducing things you can do. I'm working out alot but not as strenuous as needed to to continued pain in breast areas. I jog but have to wear a really tight sports bra with added pads on the right side. Vitamins, lots of research. It can be very individualized. Have you primary check you vitamin D level. Diet...wow so much there that can help. I definitely eat more plant based because since I have been in so much pain I really can digest meat very well. I utilize low sugar protein drinks. Many people on here use Manuka honey,why not. It's great in tea or coffee. I also use some topical stuff to my breast...I know that's a weird one but again if it's not something that increases estrogen or hurts you...why not. There are some very potent essential oils and plant based topicsls. Hopefully it won't but if the Letrozole cause severe joint pain like the Anastrozole did I might do something like taking a few weeks off when that happens then go back on or take smaller dose. There's no guarantee that we will be the ones the drugs even help so my thought is that you just have to go day to day,do what you can to be healthy and try to prevent recurrence or a new one.
Community Member
6 months agoMy oncologist suggested Claritin for bone pain .
Community Member
6 months agoI decided against AIs. I’m going to do radiation but the effects of the AIs have terrified me. I’m 77 and very active. Low mammoprint and recurrence. I’m not going to risk poor quality of life and take Anastrozole for the 2 years my surgeon recommended. I don’t think one size fits all.
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6 months agoI am new to this also and have DCIS grade 3. I am having my second lumpectomy 3/12/25 due to margins not clear. I am 72 with chronic pain from severe arthritis and have had fibromyalgia for over 35 years. I have had both knees replaced and 2 back surgeries. One a fusion. I am in so much pain constantly and have short term memory problems as well as migraines and balance issues. I am not going to do the hormone therapy for all of those reasons. My choice is the radiation. Can anyone in my age group tell me their radiation experience? I was told I would need 20 treatments. I expect to start mid April.
Community Member
6 months agoHi Ellen. I just finished 33 rounds of radiation in Feb. I'm 67. You need to keep up with hydrating your body and your skin. Your Dr will recommend creams for you. If you start to get a reaction from rads let your Dr know ASAP so they can give you something else. I was originally on calendula during day and aquaphor at night. Cortisone cream and Benadryl creams were added when I had skin issues. It was all tolerable for me with the exception of a few days at the end. Good luck💕
Community Member
6 months agoThanks Irene! I appreciate it! I’m hoping to have 20 treatments. But you never know! 💕
Community Member
6 months agoHi Ellen, I too had 25 radiation treatments which I tolerated pretty well until the very end. The last treatment I’m told is a bigger dose which caused some pretty per found exhaustion and a sun burn which appeared shortly after that last treatment. It caused a rash like reaction which healed over the next couple weeks with applying Aloe Vera Gel 2-3 times a day. What I have found an issue is my immune system doesn’t seem to be what it was before being diagnosed with IDC. My husband gifted me with a cold recently and I’ve been way more sicker than he was and for much longer. Makes me wonder if radiation treatments might knock down the immune system?? Tis a mystery for sure. I’m 75 years old and currently taking Tamoxifen for 5 years which I started last August.
Community Member
6 months agoI definitely stayed out of crowds unless it was something nessary or special because the effects of treatment and stress on our bodies do make us more suseptible to illness. High flu rates the past 2 months caused me to be cautious ,good ,frequent hand-washing and using a level 3 mask when appropriate. I do not suggest wearing a mask all the time,just mitigate your risk down when needed
Community Member
6 months agoCat yes I had stopped wearing a mask until hearing that the flu season was way worse than it had been in the last many years. Sadly my husband who suffers from emphysema and wears oxygen is not as careful as he should be
Community Member
6 months agoYes, I decided against hormone blockers due to side effects, mostly osteoporosis. I am 74 and have osteopenia but not really bad at this time. If I take the blockers, I will also have to get Zometa infusions. Plus likely pain and sleeping prescriptions. Very active with low risk of recurrence so I am choosing quality of life & frequent testing, plus calcium, D, K, magnesium.
Community Member
6 months agoBtw, I was recommended Udder Cream during radiation vs Aquaphor. I am very light skinned &burn easy,so I got a lot of radiation burns. Udder cream worked wonders.
Community Member
6 months agoI will be starting radiation, 4 weeks of 5 days. I am going to use goat milk lotion, highly recommended by others
Community Member
6 months agoI have been taking anastorzole for 6 years now. Was supposed to be 5 but we retested tumor and it came back I could use another 5 years! I wanted to cry! I’ve been faithful to this treatment, and my oncologist and I decided 7 years would be sufficient. Well I’ve decided to come off it at 6 1/2 years. My quality of life has definetly decreased in the last year. I’m only 64 and am very active (hiking and walking and chasing 6 grandchildren), but I hurt my knee in a fall on the snow and I think the joint pain I’m already experiencing for the last 5 years just exacerbated it. So, when I see my oncologist in July, I’m telling him I’m done! I feel like a little lifted knowing I made the decision and I’m sticking to it! We all have a crazy cancer journey! But we’ll get through it one way or another! 🤣 Blessings to you all! Y’all are warriors!
Community Member
2 months agoThis is such an important question that many people in similar situations wonder about. Making decisions about endocrine therapy can feel overwhelming, especially when weighing potential benefits against quality of life concerns. Many community members have shared their experiences with exploring lifestyle modifications, discussing alternative monitoring approaches with their doctors, or finding ways to better manage side effects. These conversations with others who understand the challenges can be incredibly valuable when working through these complex decisions with your medical team.
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