What helped you make treatment decisions following DCIS lumpectomy?

Welcome, @kazzerq8. I moved your question about radiation side effects and reducing chances of recurrence to this existing discussion:
- What helped you make treatment decisions following DCIS lumpectomy? https://connect.mayoclinic.org/discussion/treatment-decision-following-dcis-lumpectomy/

I did this so you can read some of the previous posts and connect with other members like @m3rt @auntieoakley @simba2022 @windsurfer7 @catbuddy, who also had lumpectomy followed by radiation as treatment for DCIS.

Here's another discussion that you might find helpful too.
- Virtual support for Breast Cancer: Starting radiation soon https://connect.mayoclinic.org/discussion/virtual-support/

Kazzerqu8, how many radiation treatments have you had so far? How are you feeling?

Hi,EVERYONE’s decision is so personal. Here’s where I am right now unless things change after radiation. I have agreed to radiation and am about to begin 15 treatments next week but have decided against the anastrozole because of the horrible and extensive list of “common/less common” side effects. I had DCIS-Paget’s stage 0 with no lymph involvement and it was not invasive. The pathology was 3.2 cm and that’s what made me decide to do radiation . According to my radiation oncologist 2.0 cm pathology is a “maybe yes radiation or possibly wait and monitor,” 2.5 cm pathology, is “recommended radiation” and 3.2 pathology is a “yes you need radiation “ so the pathology was the decision maker for me. Initially I was going to refuse radiation and TRY medication. Surgery was 5 weeks ago and was a breeze- No pain or problems afterwards and I was out walking the next day and I’ve been riding my bike, hiking, yoga and gardening for the last month. I’m healthy, strong and do not want to take the medicine especially since there no guarantees of return with taking it ( or the radiation for that matter) but I’ve been told that the radiation alone will lower the risk enough % to make worth doing it . I’m a very active and healthy 70 yr old woman and am willing to take the risk of it returning. If it were to return ( I don’t think it will) I will deal with that down the road. The quality of whatever life I have left is the most important to me however long that will be. My medical oncologist supports my decision although of course she suggested I “try” med and see if I have side effects and I can discontinue if I feel badly. I think I’ve only read 1 or 2 positive comments on this site about medication and HUNDREDS of reports of negative side effects. Also the girlfriends I know who take or have taken anastrozole all struggle with the side effects and feel sick, weak and exhausted . I’ve lived a great life so far and still have many more adventures to explore.
Check out the “common” and “less common “ side effects on this Mayo Clinic website . That list is daunting and doesn’t feel right for me at all. I’m listening to my gut on this and have been at peace since I made the decision be it right or wrong… it’s all such a personal decision and every cancer diagnosis is truly unique. Keep me updated on what you decide to do . Listen to your inner voice. Be well

For me I didn’t want to risk it coming back and the side effects I was told are not too bad after radiation

Today was my 8th radiation treatment today, and my plan is to have 20. So far i have been feeling ok but this last weekend i have been having palpitations, my radiation is on my left breast so of course im worried as its next to my heart. I’m hoping its nothing but wondered if anyone else has had this?

My biggest concern is also that the cancer was in my left nipple and my heart is on the left where radiation will be targeting. The whole cancer treatment regime/protocol is so barbaric I don’t even want to think about it anymore. All we can do is TRUST, think positive and wait and see. Hopefully someday people who have cancer will have more humane treatment options.

How long have you been taking the Anastrozole? What side effects do/ did you have? And How old are you when you had to decide?

@debraw I did 5 years and wanted to do more. But I did a test called Breast Cancer Index that showed no benefit from further treatment. I miss the letrozole. I swear I felt better on it, and certainly felt safer.

Everyone is different. I have friends who took an aromatase inhibitor and none of them had big problems. Keep in mind that people may be more likely to post or even be on a forum when their experiences are negative.

I would consider trying meds but I would also say it takes awhile to assess, at least in my experience.

I had to avoid radiation so meds were my best bet. Like I said, everyone and every case is different so respect to you in whatever you choose.

Thank you for sharing your experience and advice. Yes, it would be helpful to hear more positive comments about meds for those of us on the fence trying to make decisions.

I also had DCIS on my left breast, near the nipple. I mentioned my concern about my heart during the simulation for radiation. I asked if I could see the results of the simulation scans, and to see where my heart was in relation to the radiation. The doctor showed me how taking a deep breath during radiation physically lowers the heart in your body, then showed me where exactly the radiation is hitting my body and how my heart is not in range. It was super comforting to see that data.

What I’ve learned along my journey is that it’s really important to keep asking questions, raise concerns, ask for explanations, and ask to see the data. I just keep saying: “I’m concerned about…”. or “I’m curious to understand” or “I have another question” - and so far my doctor and care team have been great about providing answers and information.

I had a lumpectomy in 2007 when I was exactly your age. I had radiation but took no medication after. I have not had a recurrence. My lumpectomy was on the underside of my breast and I wore a Comfort Sling from the beginning of the radiation which protected my skin from becoming inflamed. The radiation left me quite tired for a short time, but that seemed to be a small price to pay for the added protection. I wish you continued good health!