Diagnosed with DCIS: How do I decide on treatment?

@jennie23b 3b you can have the Oncotype Dx done anytime after your surgery, even a year or two later, using the specimens that are still stored at the pathology lab.

In my experience, I had to ask a doctor to order it, but I also talked with the pathology lab to make sure the right specimen was sent to the right place. Most people would not do this but I am not a trusting person!

You can call Genomic Health, the company that makes the test, for advice. Maybe your doc did it???
https://www.breastcancer.org/research-news/more-proof-oncotype-dx-predicts-recurrence
"The Oncotype DX DCIS test is a genomic test that analyzes the activity of a group of genes that can affect how DCIS is likely to behave and respond to treatment. The test is performed on a sample of DCIS tissue. The Oncotype DX DCIS test offers results as a recurrence score."

Hi,
pre covid I enjoyed a wonderful support group for breast cancer...after a couple of years w/o my group due to covid, a zoom meeting started. The wonderful thing about the group is that people come with tears & leave in laughter!
I too could not take many of the drugs offered but after dealing with this (LCIS to begin)...then after 20-30 yrs of not being able to decide, I got a bilateral mastectomy....took me awhile (since 2008) but I am finally content with my decision. I must say, the group helped tremendously, things changed so much since this first happened to me. With LCIS when I was first diagnosed they said 'bilateral mastectomy' now it is considered precancerous...so there is always hope. good luck!

THANK YOU SO MUCH! I get my breast care from Memorial Sloan Kettering Cancer Center in Monmouth New Jersey. They have been wonderful, not one complaint. However, this test never came up. They were certain of my DCIS upon reading my initial breast MRI. And then a lumpectomy followed with my sentinel node being removed due to their skepticism about my microinvasions being so many and so close. My surgeon was 99.9 % sure she got it all but the team of doctors wanted 100% certainty. Chemo was never an option as I never had "invasive" cancer. I was very close, but they knew I wasn't there. I did have 25 rounds of radiation, and they were confident that that is all i needed. I am wondering if this is something that is worth mentioning to my oncologist. I just had my annual follow up with her and we knocked my Tamoxifen down to its lowest dose. I may put a message out there and ask about this test. My oncologist also has about the same time in experience as yours so this would be something they would be knowlegable about. (I hope) My oncologist is also predicting low reoccurrence rates for me, except that the microinvasions were somewhat of a concern for them.

There have been a lot of discussions on negative effects of radiation on the heart, especially to the left breast. I’ve seen a lot of posts stating several years later heart damage/disease appeared. My question is for those that have radiation on the RIGHT breast. Has anyone been diagnosed with heart disease/damage from getting radiation in the right breast?
Thanks!

Hi, I’ve been following your commentary and am waiting to see how your ONCO type will effect your treatment. I, too have just had my surgery (2 days ago) for cancer incising and am waiting also.
I am not very excited about Adjuvant meds, as I have a small body frame and osteopenia. Praying you can get results soon and a plan of treatment. Keep us posted. Blessings!

I was pretty nuch the same as you were, not high numbers, but I did do the radiation after talking to my surgeon. The I tried the pills, but they did not agree with me in a cery cery negatice way. I had all the side effects to a very high degree, crippling me. I had some issues before, slight arthritis in my knuckles, overweight, and inflammation. These were all agrivated and blew up to the worst possible results. I could not walk, I was swollen, legs, feet hands, mood swings, very fark thoughts, it was awful. After 6 months and 4 different drugs, I finally threw in the towel and stopped the drugs. My onco told me all I could do was pray. To make it worse, this was all through covid and I could not see any of my doctors, only through the phone. I was depressed, but decided to go it alone. I went on a whole food plant based diet with NO oil, and lost 65 pounds so far. I walk 2 miles every day, garden hard, and I am enjoying life now more than I ever have. I am 69. I plan to lose another 35 pounds to be a peak weight. No more aches and pains, I sleep really well, and I can do whateve I want with ease. I still do not have good use of my hands, but that is the only lingering side effect I did not lose. I can use them, but cannot bend my fingers at all..... It is a choice for only you to make. I tried them and knew in 2 weeks that they were not for me. Good luck on you journey!!!! I wish you good health!

Thank you. I have not yet received my ONCO type results. My Oncologist recommends routinely prescribed Adjuvant therapy. But, I fear the side effects would be too great. I’m waiting for my Genomic testing and consult. 🤗

Just a note that most insurance companies will only approve having a DexaScan every 2 years and not yearly.

ALL women over 50 should begin to have a DexaScan to keep an eye on the development of osteopenia and osteoporosis. ♥️

I hope you consider getting tested for osteoporosis, given your mother's medical history. This is one area where lack of knowledge can put people at unnecessary risk and knowledge can lead to treatment.

For what it's worth, my oncologists aren't overly concerned about micro-calcifications unless occur with other cancer signals. That might vary from patient to patient or differing levels of dense tissue or something. But they don't routinely remove them absent other markers of risk.

Sent to CA. From my hospital Thomas Fairhope, AL.