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Diagnosed with DCIS: How do I decide on treatment?
Breast Cancer | Last Active: Mar 20, 2024 | Replies (345)Comment receiving replies
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.
Replies to "I’ve been doing extensive research into treatments & side effects. I’ve seen the Oncologist & the..."
Just for clarification, the purpose of the Oncotype test is to (1) provide a "risk of recurrence within 9 years" IF the person takes aromatase inhibitors or tamoxifen and (2) to suggest whether chemotherapy should be considered. Having the risk of recurrence number may indeed help a patient make other treatment decisions about breast cancer but the test is specifically designed to determine whether chemotherapy has a predicted beneficial risk/reward ratio and should be suggested.
Rene, this might not apply in your case but I was offered site-specific radiation on a schedule of every other day for a total of 5 sessions. I go to Cleveland Clinic but read the story of a woman patient at Mayo who also had 5 sessions of radiation. I think it was also external bean radiation. So even with radiation, there are options and one specialist's standard protocol might not be another's. Or one facility might have newer technology than another. That might add to your research burden but does suggest that a second opinion may give you a better field of choices as well.
I applaud your research and trying to balance possible competing health issues. I declined radiation myself as the stage 1A tumor was in my left breast and therefore a little riskier as close to my heart. And two pathology reports showed wide clean margins after the lumpectomy. And the sentinel lymph node was negative. I didn't even know at the time that radiation could preclude further radiation if necessary.
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@rene1636 IMHO, you are spot on w/ your proactive research and thought process. I’m 2004 I had DCIS. I had a lumpectomy and all margins were clear. Small tumor, I forget the size. I read all the medical studies about radiation & risks etc. I essentially educated myself the best to my understanding. Went to the radiologist to see his recommendations. He recommended 5 days/ week, 7 weeks. I told him, you are treating me like I had metastatic cancer & theoretically I do not have cancer. His answer ‘That’s the protocol’. I asked ‘if I was your wife, would you have me do radiation?’ He said that’s a fair question. I disagreed and went on to a second opinion. The second radiologist quoted from some of the research/studies I read and said he did not believe I needed radiation & even stated ‘if I was his wife he wouldn’t have me do it’. I weighed decision for a time. It’s tough decision. I decided no radiation and took tamoxifen for almost 4 years. No one had told me about once you radiate, you cannot ever do again, so from that aspect I’m glad I did not.
You have to advocate for yourself. You are IMHO doing all the right things for you and your health. I wish you well and pray that all works out well for you.