What helped you make treatment decisions following DCIS lumpectomy?

I, too, was happy with how the expander looked when I came home from the hospital. My plastic surgeon did his thing right after my breast surgeon did hers. She was able to save my nipple and I think that played a great part in all of this. Plastic guy filled it in the OR and I’ve had one more. He’s going to take out the expander and put in the implant on Oct 3🙏🙏 Hope all goes well for you-you’ll be in my thoughts.

I had dcis stage zero. Radiation for 4-5 weeks. Tried anastrozole and tamoxifen and had very bad side effects. My lumpectomy was Oct 5 2021. Then radiation.
My dr wants to Revisit tamoxifen or exemestane.
Does anyone have experience with either of these? I’m on a plant based diet and take many supplements. God bless everyone that has had Breast cancer!!!!

Hello !
So this is my story. 2012 DCIS stage 0, triple negative on left breast. I wanted a bilateral total mastectomy but did not let me because I was young (38). I had a lumpectomy and 30 radiotherapies. 2021 DCIS stage 1, triple negative left breast, this time the mastectomy was indicated. When the pathology came I had an invasive cancer stage 1, that was never seen in the same breast. Because of it, I had 16 rounds of chemotherapy. I know you have a different type of cancer, but I would go for double mastectomy with reconstruction. I know that we should not live with: what if??? But yes I asked myself what if I had the mastectomy in 2012? I needed no radiation that time and a recurrence 9 years later. I finished chemotherapy 7 months ago and already had the reconstruction. Having gone through radiation my skin on my left breast is not that flexible, so I still have a smaller breast. But guess what! I do not care. I am alive. 😉

I zoom in to this Monday evening group when I can and I find it extremely helpful and supportive. You can simply just listen with video turned off if you want to get a feel for the group but not ready or interested in participating. Hugs

Thank you. Someone else also mentioned the Monday zoom & I’ve emailed to join. Thank you for the info!

I could not tolerate the drugs at all, swelling of hands and feet, dizziness, lethargy, very very sore joints. I was 67. I stopped all drugs after 6 months, and when to a plant based NO OIL diet. I have lost 65 pounds and I walk 2 miles every other day. I have never felt better in my life! I take no supplements, as they also have fillers in them that caused me problems. I only take B12, D thru the winter, and magnesium. Once in a while a calcium if my bones ache. Thats it, thats all. Luck on your new journey. I am 3 years clean after double lumpectomy with radiation.

if the side effects affect you way of living, consider stopping. See my story below.

Some people here have mentioned
that checking hormone ( estrogen) level after breast cancer surgery might help to decide for or against the hormone therapies (Al’s , Tamoxifen) after surgery. ✅
My question is how it can be done?
Thank you

Siteman cancer center is ranked 11th in the nation.
This would be an excellent choice for a second opinion or to help find your way through all of this. Here is the website.
https://siteman.wustl.edu/visiting/main-campus/
The other thing I would say is please remember on forums you really hear a lot from people who cannot take treatments due to side effects, but this is still a very low percentage of women who take these treatments. Typically, people who have relatively no side aren’t here talking about it. Have a conversation with your oncologist about your concerns and know that everyone who has gone before you is cheering you on.
Have you already had some genetic testing on your biopsy tissue?

Thank you for the encouragement! I know everyone responds differently to the various treatment options & there are a lot of variables involved in everyone’s journey so that effects everything as well. My surgeon said I’d have to talk to my Oncologist about the genetic testing after my lumpectomy & that they don’t do the test on the biopsy specimen?? I’m definitely interested in the Oconotype DX DCIS genetic test. I’m planning on using the results to help me decide on what treatment I want. I have a lumpectomy scheduled 9/21 & I have an appointment with an Oncologist on 9/26 to discuss the treatment options. I’m aware of Siteman Cancer Center. I was at that facility when my husband was diagnosed with terminal cancer after being misdiagnosed at another big local cancer center. 🥺 While his diagnosis was nowhere similar to mine, cancer freaks me out especially after seeing what can go wrong if dealing with the wrong facility &/or doctors. Depending on what the Oncologist has to say I may very well seek a 2nd opinion with Siteman, if for nothing else other than piece of mind. My main concern is radiation which the surgeon said I’ll need. From what I’ve researched this is the “standard care” after a lumpectomy. Since this is DCIS ER+/PR+ w/Comedo & in a small area (2cm) & I’m told the radiation is necessary for a “just in case some was missed” scenario. I think I may pass & give the hormone therapy a try before dismissing them as a preventative. I’m told I have a better chance now of getting another type or invasive cancer in the future which is the main reason I want the genetic testing to help determine my odds. My final decision will be based a lot on that & depending on the margins in the pathology report. If I get another cancer in the same breast, radiation would not be an option leaving a mastectomy as my only choice which is the reason I’m hesitant to get it now. I’ll be closely monitored for the rest of my life by getting a yearly mammogram & a yearly breast MRI (“flying superwomen pose” oh, joy 🤣) spaced 6 months apart. I feel this should help find any future cancers in the early stages. So many variables to juggle while your life could depend on decisions made now, hoping you’ll be in the 97% that are still alive in 20 years after DCIS treatment. This journey feels like walking in pitch black with only a rope to help guide you while getting rays of light from people on the same journey. So, sorry it’s long winded.