Diagnosed with DCIS: How do I decide on treatment?

Take it a step at a time if you can. For one thing, a lot will be learned from the surgery, the size of tumor when the surgeon is actually "in there" as my surgeon referred to it, sentinel lymph biopsy if being done and post-surgery biopsy results. If you're a candidate for genomic testing, that can also yield a lot of information. So a lot of decisions you're pondering now might not even be recommended when all the data is in. I worried about decisions that, happily, I didn't have to make. That was a huge benefit of, in my case, the OncotypeDX test.

@lcr2017 I read your link and for me, the most important sentence was the last one: "The suggestion that estrogen deprivation with AIs can favour a ‘bone-related’ risk conditions for developing bone metastases must be considered with caution and surely needs further validations; our next multicenter confirmatory study will try to shed light on this topic."

The idea that aromatase inhibitors encourage metastasis both by creating an environment that encourages it, and by causing osteoporosis that also encourages it, is pretty darn alarming- and will affirm those who decline these meds.

I am going to ask my doctor about this. These issues are a far cry from my original question about whether Prolia and biphosphonates have preventative effects regarding metastasis, as well as having protective effects for bones.

Just read this and so embarassed by all the spelling mistakes!!! LOL Thats what happens when your fingers wont bend!

This article explains how the different medications help bones.
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-finding-the-right-osteoporosis-medication/
After reading it, I am glad that I chose the Prolia during my treatment and not the Reclast. I just don’t know what to do when the Prolia is up in January. I mean, when my oncologist and I were discussing what to do about my bones all I did was mention the six months that I wasn’t on anything and innocently said that maybe we could do another 6 months to make up for it and he said he thought it would be a good idea. But every doctor is different and some patients also have no bone issues. You and I have both been reading posts about how some doctors are flexible and are willing to experiment and work with their patients so that they take this important medication. (and you understand the language better than I do). I try to be careful when I post and try to stick to my own experience. The only reason that I heard this from 2 doctors is because my breast surgeon told me to get my thyroid levels checked. So I did. My number was 6 and as much as my PCP was my rock through this, he told me that he starts treating at 10. My surgeon and oncologist told me that they start treatment between 3 and 4. As a result, I ended up with an endocrinologist who also knew all about bones and she also mentioned the metastasis.
I never asked why it would help, but you did. I just assumed it was just a good call because they both told me that patients who have cancer in their bones are treated with Prolia and breast cancer can go to the bones. That’s really just what happened.

It’s all so true. I thought I was doomed to radiation and definitely chemo based on the first doctor that I was seeing. After “accidentally” seeing another doctor who seemed to have a similar opinion, once all that genomic testing came through, everyone was shocked and the entire office was calling me with the good news. Wishing you good news.

I am definitely going to ask about the different tests they can take to gauge future risk.

Thank you so much for your response.

So true. I have a little poster that says, “Focus on the Step in Front of You, Not the Whole Staircase!” I have to try and slow down inside - One Step at a Time. Ugh!

I will be asking about the Oncotype DX test a few days before surgery. Thank you for your reply.

Dear @tctredwell1 and @callalloo
Thanks for sharing your experiences. I'd ask you (both) what happened after lumpectomy.

A familiar (+64)has been diagnosed CDIS (free marges, small size 8mm, progesterone&S positive) I've no idea if the Anatomyc Pathologc used Oncotype or mamaprynt (Europe) so there's no info about it in documents.

Lumpectomy was fine and CEntinel nodul was Not studied because it was an early stage and they consider it was unnecesary.

After surgery: Surgeon doctor is so happy with the lumpectomys result.

Oncologist and radiot. doctors suggested as a preventive step hormonal therapy(tamoxifen x5years)&30 sessions of radiotherapy.

We are wondering if this is absolutely necessary. Doctors say "it's the universal protocol"

FEAR about preventive's treatment suggested. No receptive.
Thanks for your comprehension .

Hello @nayade ,

It sounds like good news for your friend, a cancer likely caught early (8mm is very small). [I'd wish that the surgeon had done a sentinel lymph node biopsy but maybe the doctors determined clean lymph nodes some other way.] And you didn't mention the HER2 status so what I note below is if the cancer was E+, P+ and HER2 negative. I'm not a doctor so the following is just from what I learned from my post-lumpectomy journey.

Lumpectomies came about when women demanded that doctors review the usual 'automatic mastectomy' decision for breast cancer. The resulting lumpectomies were a compromise so the 'rule of thumb' developed that "radiation-plus-lumpectomy" was an alternative to complete mastectomies for selected cases of breast cancer. According to my oncologist, they have still have equivalent statistics for success. So the rule of thumb remains that patients having lumpectomies have (or at least consider) post-surgical radiation.

There are differences in the kind and frequency of radiation though. The oncology radiologist I saw offered a series of 5 sessions, every other day, with the whole cycle complete in 9 days. Not every facility has the technology to provide that it though. And some doctors do not routinely recommend radiation for older patients.

If you friend can get a second treatment opinion, she can ask that doctor about radiation choices and the tamoxifen. If she is postmenopausal, she can also ask about aromatase inhibitors which are the drugs most commonly prescribed in the United States (but not always, again) for E+, P+, HER2- small tumors caught early. But there are a lot of other factors that an oncologist considers when making recommendations as well and maybe tamoxifen is the best idea.

There is no clear "universal protocol" that I know of just the usual 'standard recommendations' which people frequently get a second opinion to confirm or question. Doctors can have different opinions which are, both, valid but just based on differing perspectives. That's why a second opinion, if possible, can be very reassuring.

Hi nayade.
I haven’t had my lumpectomies yet. I’m scheduled for surgery on October 24 and my follow-up appointment is November 10.
I will let you know about my surgery and after-care in a few weeks. Take care.