Diagnosed with DCIS: How do I decide on treatment?

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.

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. 🤗

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.

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.

Thank you. I’ll ask my doctor about the Reclast!

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.

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.

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.

@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.