DCIS do I really need an AI?

First of all I send you a big hug with much love. An oncotype is predictive. I would start there. Then, for early breast cancer you can get a blood draw at your home: Signatera's
test results will tell you if you have any cancer DNA in your blood. Not getting answers from your oncologist? Please get another doctor. ❤️❤️❤️ Picture of my service dog just for fun.

Hi
I also was told I had dcis stage zero from my biopsy but then after they did my lumpectomy my pathology showed I had some invasive cancer. Even though the doctor said it was very low invasive I'm still having radiation and as far as the AI goes I really do not feel I will take it because I have too many other health issues especially osteopenia with a fracture already it's a hard call for everybody I think as to what you think you should do. I hope that whatever you decide things go well.

As I’ve been told over and over, every one is different . I am taking AI Anastrozole. Been 3 months. Many side affects…..such as joint pain, headaches, overall tiredness, mood swings. I promised that I would take until my next apt in April. I had invasive ductal carcinoma. Only had 5 radiation treatments, thank God. Going to make a decision in April if I will continue on the pill or try a new one or quit all together. I’m 72 and very active. Don’t want that to change! Good luck with your decision 🤗

@windyshores I had a mastectomy 4 1/2 yrs ago and my oncologist never spoke about my taking Anastrozole and bone density affect. I do not think he even looked at my Dexa numbers. Of course I didn’t know about the affects Anastrozole had on bone density. Lo and behold after taking for a year, he says you have Osteoporosis when my current Dexa scan was forwarded to him. Doctors need to be more forthcoming with the side effects of medications they are doling out. I took Anastrozole for 2 1/2 yrs.
Also, my NEW oncologist ordered up an Onco test following my surgery (1+ yrs after) He told me he had wondered why surgeon or oncologist didn’t do one. I was surprised to learn they keep tissue for 7 yrs. My Onco score was low.

@rene1636 I had DCIS in my left breast 20 years ago. I chose not to have radiation, but took Tamoxifen for 3 yrs. Hair started falling out so quit it. Years later I heard, like you, of you radiate the breast once, you cannot do again. Dr. didn’t mention, but that long ago, maybe they didn’t know. I had a mastectomy (unilateral) on right breast, so like you, I get checked every 6 months, alternating between mammograms & MRI on left remaining breast. I feel my
screening is very proactive and of something shows up , it will be caught early. We all need to make our own decisions on what feels right for us , and Be Proactive. Stay strong to all of you going through this.

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I am interested to know how many women on here decided not to take hormone blockers for various reasons. I am postmenopausal dcis I am on the fence as to what I'm going to do I tried tamoxifen that was a nightmare so now I'm waiting to see my doctor in May. I was only on 5mg day 2 the headache and brain fog took off and the fatigue. Headache would not subside no matter what I took. Day 3 off it finally headache relief.

@sue417, I moved your question to this existing discussion where @marylynr asked a very similar question.
- DCIS do I really need an AI? https://connect.mayoclinic.org/discussion/dcis-do-i-really-need-an-ai/

Choosing hormone therapy is often discussed on Connect. You may also be interested in these related discussions:
- SERMs and AIs - Choosing not to take them
https://connect.mayoclinic.org/discussion/serms-and-ais-choosing-not-to-take-them/
- Aromatase Inhibitors: Did you decide to go on them or not?
https://connect.mayoclinic.org/discussion/arimidex/
I'm sorry to hear that you are having such debilitating side effects even while taking a reduced dose of 5 mg. While you will receive multiple viewpoints from member that can be helpful, the ultimate decision is best made after having an informed discussion with your oncologist. I would ask questions specific to you like:
- For me, what are the benefits of taking a SERM or aromatase inhibitor (AI)?
- What are the risks if I choose not to continue?
- My side effects, such as _____, _____, and ____ are seriously affecting my quality of life. Would they be different or less if I switched to a different AI medication?
- What else should I know?

Each medication has a different set of side effects. Some may be more tolerable for you than other side effects. Make sure the oncologist knows what is important to you and how the side effect prevents you for doing the things you love. This will help them understand your preferences and present options that suit you.

Good luck at your upcoming appointment.

Hi
Wow you and I are very very similar and you have the exact same question as I do. I just tried tamoxifen not enjoyable bad side effects at 5 mg so now I'm back to square one I do not know what to do and I can't see my doctor until May 16th

Hi
I also requested an oncotype but was told couldn't have it so I'm going to have that conversation and find out why they wouldn't do it as I have dcis also had radiation and surgery do not want to do a serm or AI

Hi
I also am in the same boat dcis I did radiation. Tried tamoxifen it was a nightmare at 5 mg so off it right now. I have osteopenia with a fracture and I have a heart condition. I want an oncotype test but I've been turned down so I'm going to ask again and ask why they won't do it I also learned of a test called signatera I think I am going to ask about that.