Diagnosed with DCIS: How do I decide on treatment?

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!

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!

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.

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!

@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 all. I saw the oncologist yesterday (my ‘second opinion doctor’) regarding test results. This second, more serious, round of tests verified the DCIS finding in my right breast plus an additional “swirling” area (or something like that) that often turns cancerous so the doctor wants to remove both of these areas. In addition, they diagnosed DCIS in my left breast (which wasn’t detected by original doctors with the first round of tests). In this case, it’s one small area. So I’m looking at a large lumpectomy for my right breast and a smaller lumpectomy for my left breast.

Then the doctor tells me that he wants to put a SAVI reflector in my left breast two days before the surgery and wires in my right breast two hours before the surgery. (I’ll probably be picking up signals from Mars by then!)

Anyway, the surgery is due to be scheduled in 2-3 weeks so at least my black and blue right breast will have time to heal.

That’s everything for now, I’ll keep you posted. Take care all

I’ve been doing extensive research into treatments & side effects. I’ve seen the Oncologist & the Radiology Oncologist. The surgeon & both Oncologists have recommended 4 weeks of high dose radiation for my small area of DCIS stage 2, ER/PR+.I understand that this is the “standard” treatment plan. I don’t want a standard treatment, I want a treatment plan that is specific to my situation!! My pathology on the lumpectomy (9/21) showed NO DCIS present so it was all removed with the Stereotactic biopsy. I’ve told all dr’s that I’m not deciding on any treatment until I get further testing. The Oconotype DX DCIS genomics test was just ordered yesterday to help me decide on radiation & meds. I have a DEXA scan to check my bones & a blood test to check my vitamin D levels scheduled mid Oct. to help decide on hormone suppression meds. A pre-op chest X-ray showed I have plaque with calcifications in my Aorta so I’m seeing a cardiologist 11/1 to check that before I decide on radiation/meds. I’ve seen numerous reports that breast radiation can affect the heart & bones. My DCIS is in the right breast which would lessen the heart damage risk. I’m currently very hesitant to get the radiation for the DCIS (can only radiate each breast 1x). Since I now have a higher statistical chance of an invasive cancer in either breast I think I may want to save radiation in case of something invasive or a reoccurrence of the DCIS. If I get radiation now & if there is a reoccurrence in the same breast my only choice would be a mastectomy. I’d like to keep the option for another lumpectomy & possible radiation in case of reoccurrence or especially an invasive BC. I’m hoping the Oconotype test will agree with my “uneducated” school of thought. Once all testing is completed, I’ll use that information along with all the doctor recommendations to decide on my best treatment plan. I may even seek a 2nd opinion before I decide depending on the outcome of testing. It’s a timely process but I strongly believe that educating yourself using several sources is the smartest thing to do so you can be involved in what treatment is BEST for your particular situation. There are so many variables to each persons case I’m not convinced that “standard” treatment should be used for everyone as suggested. There is new information out there that says radiation may not be necessary for everyone’s situation. Radiating your body is a life long decision since the effects last a lifetime.

@jennie23b you didn't have chemo and you are on tamoxifen. Are you sure you didn't have an Oncotype done? The Oncotype tells you whether chemo is of benefit (clearly no in your case) and risk reduction with tamoxifen (which you might want to know, but then again, you are already taking it).

You can have the Oncotype (or any other testing) done with stored specimens. Your doctor can arrange it and you can facilitate by talking with the pathology lab.

I began my journey in my hometown in NM. I always had annual mammograms, until our local hospital began the Covid closings for regular screenings. I was aware of concerns with my prior exams showing dense and cystic tissue checked by our radiologist. This year I actually felt and saw a lump, which was biopsied and found cancerous. After 5 biopsies, 2 in NM, the final and diagnostics here in the Az Mayo.
I had lumpectomy ( 3 masses), last Tuesday. Received my Path results on Thursday and have more questions concerning a tiny small spot.
I am waiting to talk to my Oncologist, I met for 10 minutes a few weeks back. Both Oncologists, one in NM and one at Mayo, gave me the impersonal routine prognosis and standard treatment plan, surgery, and Adjuvant therapy for 5-10 years.
I am a 73 years old, small, thin and already have Osteopenia. So…. Considering side effects, etc. I’m concerned with this routine treatment plan. We are waiting for OncoType test results.
If you have any advice, please let me know. ❤️

I already had pretty advanced osteoporosis when I went on Femara, and didn't fracture during those 5 years of treatment. I am now on Tymlos. Many go on a bisphosphonate during AI treatment but my doc didn't want me on it due to another health issue. If you can take Reclast that protects bones.

Side effects aren't bad for many of us (but respect those who do have bad ones).