Diagnosed with DCIS: How do I decide on treatment?

Hello, I have recently undergone a microdochectomy and the results have come back as dcis in milk duct. I have now been advised for further suregery to remove the other milk ducts and to remove the nipple and surrounding area. Has anyone else had this?

Welcome @mandys. You are not alone. I moved your message about your diagnosis of DCIS to this existing discussion:
- Diagnosed with DCIS: How do I decide on treatment? https://connect.mayoclinic.org/discussion/dcis/

I did this so you can read the previous posts and connect with other DCIS-ers like @tctredwell1 @sakina @kathyomaha55 @jennie23b @finallyretired @nlb122 @mylane @anniemae2 @polianad22 and @auntieoakley.

Have you been scheduled for surgery already? I bet you have loads of questions. What would you like to ask?

Hello everyone,

I was offered lumpectomy and mastectomy. It's not easy to choose. What are your thoughts about those two? Removing the axillary lymph nodes scares me as I work with my hands (fiber artist). Can you please share your thoughts? Thank you.

Yes I have had surgery about 6 weeks ago. I'm so confused about what to do as I have read so many negative things about taking a pill. I feel like I should but then the next day I feel like I don't want to. I had an appointment with my oncologist and she explained what the pill would do and that was about it. When she walked out of the room she said "let me know if you want to take the pill". No other information was given to me, no resources. I've been left I feel trying to figure out what is best for me by myself. So I turned to this website and maybe I was in the wrong group because almost everyone is saying how horrible the side effects are. I'm sitting on the fence everyday. Not sure how long I have to make my decision about the treatment.

Hello @tctredwell1. I read your above post and your situation sounds a lot like mine. My question for you is did you decide to take the pill treatment? I'm 72 years old. My cancer was DCIS Stage 0. My surgeon didn't think it was necessary, didn't give me a choice, that I have the OncotypeDX test so I can't fall back on those results. There is no cancer in my family. It was diagnosed as ER Positive. My concern is the side effects that I have previously read. I'm an active 72 year old and want to enjoy my life for as long as I can, as we all want to of course. Please let me know what you decided to do and I would like to hear how you are doing.

Thank you

Hi ‘finally retired’.
I don’t have the findings yet or the final diagnosis from my second opinion doctor. I will see him this Thursday afternoon and will let you know where I stand. As far as ‘how I’m doing’ - not so great today. I guess I’m finally crashing after that marathon of tests. Ugh! Thanks for asking and take care.

Hello @tctredwell1. Thank you so much for your quick response. I'm sorry you are not doing so great today. With hope tomorrow will be better. For sure let me know what the results are from your doctor. I'm so confused and frustrated with everything so I understand how you're feeling, or as much as I can. I'm still just trying to make my way through the pill treatment. I don't want to take it however I'm afraid not too. Good luck and I'm sending prayers your way. 🙂

Hi again @finallyretired. I’m new to all this - could you explain what the “pill treatment” is?

Not everyone has bad side effects from an AI. And those people do not post on this web site. Something like 60% have none. Ask your doctor what % chance of re-occurrence they think you have. I was told an AI reduces that percentage by 50%. So if you chance of reoccurrence is 10% - then an AI will make it 5%. I was told my % was 6%. But I was only 62 when diagnosed. I decided to take the AI to lower my risk. Each of us have to make our own choices based on the information we have been given. Good luck.

I assume she meant whether to take an Aromatase Inhibitor or not. If you are ER+ and/or PR+ then this drug suppresses all hormones in your body, which were feeding your cancer. 40% of people have negative side effects from taking this pill. I have about 13 months left to take mine to hit my 5 year mark. My doctor talked about taking it for 10 years - but I discussed it at length with her and we decided I could stop at 5 years. I was on anastrozole for 12 months and suffered terrible joint pain - especially in my hands. I switched to Exemestane, which for me, has had less side effects. If you are pre-menopausal - they usually prescribe tamafoxin. Get all the information you need to make an informed decision on this. Good luck.