Diagnosed with DCIS: How do I decide on treatment?

At age 41, in 2003, I had LCIS, lobular carcinoma in situ, and ADH atypical ductal hyperplasia, stage 0, pre-cancer. Found on mammogram clustered calcifications. I had a lumpectomy and took tamoxifen for 5 years. Within, 2 years I began to have very very heavy clotted periods. I developed several benign looking ovarian cysts. Finally I had a hysterectomy and was able to stay on the tamoxifen. (After 5 years, my oncologist, switched it to Raloxifene for 7 years.)
The hysterectomy put me into early menopause and either that or the medications caused my osteoporosis at age 58. But it was worth being cancer free for 20 years. The cancer just came back this year. Still very early stage.

Other than that, my only side effect was 10 or 15 lbs that came right off when I finished taking the meds.

Thanks

Thank you windyshores! I saw an oncologist last week and was not comfortable with how he acted or what he said. I got another recommendation from a friend (she’s a nurse) for another oncologist at the same facility but was hesitant to call. But now after reading your post saying you got 4 opinions, I have all the courage I need to make that appointment for a second opinion!
Thank you so much!

tctredwell1
I have the same thing as you, I get surgery in a couple weeks, then 5 weeks of
radiation. I am still debating about the pill, if you look it up there are a lot
of side affects. I know some woman that started the pill after rad. but stoped it they
felt so bad. I want quality of life, I don't want to be sick or hurting or lose my hair in
clumps. I think about it every day. tell me what you decide.

marcia115 - I saw a post where the woman said she had 5 sessions of radiation as a form of “clean up”. That sounds good to me.

I’m also going to make an appointment with a new oncologist for a second opinion before I make any decisions.

As far as the estrogen inhibitor, I want to know about the choices - there’s more than one and I will probably agree to try the inhibitor and see how I tolerate it. I’ll let you know.

@marcia115 many of us took these medications with few side effects. Companies are legally required to list all possible side effects for any and all meds, and forums tend to have more posts by those who do suffer from side effects. Try different ones if you have issues, and also try different manufacturers. I was determined to take an AI and ended up taking brand name Femara.

windyshores -
Thank you so much for this information.
The way some doctors talk - it’s like there’s only one medication and there isn’t!
Thank you again!

I had the same issue with my care team. I no longer felt comfortable with the conflicting misinformation so I’m going to a different cancer center for my DCIS. Have you had an Oncotype DX DCIS genomics test done? This test will give you the percentage of reoccurrence odds with or without radiation. I used this to help decide to get radiation or not. Radiation is the standard treatment after lumpectomy. My test came back with a 3% difference. I’ve made the decision to roll the dice & to not get radiation. My pathology report after the lumpectomy was completely clean. It was all removed with the biopsy. My reasons…Radiation continues in your body the rest of your life unlike the meds. It can cause medical issues (heart & lung) during treatment & later in life. If you get a reoccurrence in the same breast then radiation won’t be an option & mastectomy is the only choice. Rarely can you get radiation in the same breast twice. Since I had BC once the odds are higher for me now on getting it again. I’m saving the radiation option/choice in case of a reoccurrence where another lumpectomy could be done. I am considering the hormone meds since mine was also ER/PR +. I’m seeing the new Oncologist on the 16th to see what’s suggested. Before taking meds I’m seeing a cardiologist beforehand to be sure my heart is healthy enough to take the meds which some can effect heart health. Some plaque showed up on some of my scans. I don’t want to cause another problem that would effect my quality of life. It’s a personal choice that everyone needs to make for themselves. I’ve done a lot of “uneducated” research, lol & I'm comfortable with my decisions so far. Trying to find a balance is frustrating but confidence in your care team is crucial! Best wishes on your journey!

@windyshores reading your post an OP, made me think, with the several/many AIs or estrogen inhibitors, do you think that one works better than others. Femara vs Anastrozole vs Letrazole etc? I took Anastrozole. I’ve not thought of this before 🤷‍♀️ The oncologist recommended Anastrozole snd I started it. Just curious.

rene1636 - The first oncologist said he’d have genetic testing done and then walked out the door. I haven’t heard anything since. Hopefully, my second opinion oncologist will be more helpful. (I’m calling Monday for an appointment.)
As far as radiation goes, I don’t think it’s a great idea. I still have both my breasts and if there’s a recurrence I wouldn’t have radiation as an option. But I am going to ask about a shortened treatment or “clean up” and find out if that can be repeated if need be. It will be a few weeks, but I’ll let you know what I find out.
Thank you so much for your response.