Diagnosed with DCIS: How do I decide on treatment?

@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.

There 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.

Thank you! That’s good information on the radiation technique! I will research further in the event I find I need radiation. My Radiology Oncologist told me that they use the mega dose radiation on the entire breast 5 days a week for 4 weeks. She didn’t mention any other type of radiation to choose from. After researching I’ve seen that there are a lot more side effects from the mega doses of radiation. Since there was nothing found after my lumpectomy clean margins are not applicable to me to help decide. I can’t believe that doctors are not telling women that in most cases if something comes back in the same breast after already having radiation their only choice is mastectomy. My own surgeon didn’t tell me, I asked her after seeing it several times during my “uneducated” research. I think this should be in every doctors discussion with patients. By seeing responses in several groups it seems the opposite. I think a lot of doctors just go with “standard care” & aren’t looking outside the box for treatment options specific to an individuals case. Women need to be their own advocate when it comes to treatments. Maybe it’s because I’m from Missouri, the “show me” state, lol. Or it’s as my mother used to say “I won’t do anything unless I think it’s my idea”. 🙂 I took what the doctors said & expanded on that by extensive research at the major cancer sites. Breast cancer is one hell of a journey. What you decide today could greatly impact you later. Wishing us ALL the BEST!

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).

Ellie, 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.

One factor is whether facilities have new state-of-the-art technology. Those that don't can't offer it. This argues just one benefit for trying to get care at the larger well-funded medical institutions. Also many, like Cleveland Clinic where I go prohibit physicians from receiving 'incentives' from pharmaceutical or medical equipment suppliers. [I think Mayo has the same policy.] I find it reassuring that my physician isn't subject to a conflict of interest in my medical care.

Hmmm, physicians incentives wasn’t even on my radar. It would be a good question to ask. In Missouri we have Siteman Cancer which is a larger institution & ranked #10 in the country. I’m not currently going there but I may switch if for no other reason than to get a 2nd opinion regarding if I absolutely need radiation or not. Thanks!