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Diagnosed with DCIS: How do I decide on treatment?
I was diagnosed with DCIS. I have to go in for a breast MRI with contrast tomorrow to see how active the cancer is. If it’s contained and not very active, do I have to have a lumpectomy?
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Thank you. I’ll ask my doctor about the Reclast!
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1 Reaction@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.
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5 ReactionsEllie, I hope your OncotypeDX is encouraging. My oncologist also routinely recommends adjuvant anti-hormone therapy but was OK with my skipping it because he thought I was at very low risk if recurrence and the Oncotype genomic analysis suggested the same thing.
I had my first annual post-lumpectomy mammo, ultrasound and oncologist's physical exam and all seems well.
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3 ReactionsJust 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.
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1 ReactionIt might be that the OncotypeDX wasn't appropriate as there are parameters and conditions for its use. I would be confident of care at Sloan and almost went there myself. (And would have if I'd had something complicated or rare.)
Kudos on the lower tamoxifen dose. That sounds encouraging. How are you feeling about it?
Both Reclast and Prolia can help your bones while taking an AI. Both of them have an added benefit of prevention of metastasis to bones. Apparently, they are given to patients with bone cancer, also. Prolia is a quick injection every 6 months and Reclast is an infusion once a year but I don’t remember how long it takes. Talk to your oncologist. My endocrinologist and my oncologist kept in touch. I was thrown into osteoporosis because I did not take Prolia during the first 6 months of the AI. The doctors wanted to see if I had side effects from the AI first. Those 6 months without apparently had an impact made. Once I started, my bone density improved—no osteoporosis. I was given a last Prolia this summer at my 5 year anniversary. But I will have to start on something else in January because I was informed that if I don’t maintain what I recovered, I could very quickly lose all the benefits. My endocrinologist said my goal is to maintain bone, not build bone at this point. (This effect has a name but I don’t remember). I could have asked for a year of Reclast. I am not sure what I will decide since the other meds also can have some side effects. Still researching all the options.
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1 Reaction@lcr2017 can you cite that these meds help prevent metastasis? I always thought that too, but researching shows that Prolia and Reclast and similar drugs prevent damage to bones from metastasis, but not metastasis itself. I would love to read anything you have found.
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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1 ReactionThere are 2 separate Oconotype tests. That’s correct for the Oconotype DX (determines need for chemo) but the test specific for DCIS, Oconotype DX DCIS test is now being used to rate reoccurrence in women with DCIS when treated with lumpectomy alone. Since I’m trying to (safely) avoid radiation I think it would be a good tool to use to rate my risk of reoccurrence of DCIS or IBC to see if radiation is necessary to my specific case.
This information is provided by Breastcancer.org.
“ Another study has confirmed that the Oncotype DX DCIS test helped predict the risk of recurrence in women diagnosed with DCIS and treated only with lumpectomy.”
My pathology report showed NO DCIS was found after my lumpectomy so it was all removed with the Stereotactic biopsy. Since nothing was found I’m not convinced I need the radiation. Using the genetic test results will help with my decision. If it shows I have a high rate of reoccurrence I would reconsider the radiation. If it shows I have a low risk of return I most probably will not get radiation in the event I would I would need another lumpectomy with radiation in the future. A lot of doctors don’t tell women that you can only radiate each breast 1 time. In the event of a reoccurrence the only choice then is a mastectomy. I’m just trying to keep my options open for any future reoccurrence since with having had DCIS I have a 30-40% statistical chance of future breast cancers. The test will be more specific to my genes for my reoccurrence rate.
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3 ReactionsI can’t find the citations (and honestly don’t understand the language), but my understanding from my doctors was that since the AI depletes bone, it creates a favorable environment for tumor growth in the bones especially in high risk spread of breast (and prostate) cancer. I will probably ask in January because at some point, I will be released from my treatment. But, you are correct. They also said it’s given to patients whose cancer has spread to their bones.