Diagnosed with DCIS: How do I decide on treatment?

I too, have a similar situation. Just had IDC stage 1 tumor removed along with 2 very small suspicious spots. No lymph node detection. I’m 73, small frame with osteopenia. Not wanting to take the adjuvant therapy, I read that the odds of recurrent cancer is reduced as patient ages, regardless of the therapy. Any input, thank you all

No argument. I just wanted to clarify the function of the aromatase inhibitors in case others are still learning what they're for and what they do.

@mylane
@callalloo
Deep apologies as I realized, today, that my post from last night was misleading and needs to be corrected. [I had hurricane preparations on my mind...]

According to Oncotype's analysis of the tumor tissue from you that was submitted for genomic analysis, your report yielded "risk of (loco-regional) recurrence within 9 years" of 4% IF you take "aromotase inhibitors or tamoxifen" as noted on the report itself.

Let's assume that aromatase inhibitors 'may' or 'can' reduce the risk of recurrence by 45% as both of my oncologists think us the correct statistic to work with, one of whom is head of breast cancer oncology for Cleveland Clinic.

That would mean that your risk of recurrence if you don't take either of the drugs is about 7.3%.
[7.3 minus 45% is 4.015.]

Looking at it another way, if you don't take the aromatase inhibitors, you have a 92.7% chance of NO recurrence within 9 years. And a 96% chance of NO recurrence if you do take the drugs.

All of this assumes that the Oncotype genomic assay is accurately predictive and the three oncologists whom I consulted with think it is, though there are no guarantees of course.

I hope this helps a little and gives you some further questions to ask your oncologist or any whom you see for a second opinion. I think it's worth trying the aromatase inhibitors. You may have few-to-no side effects and be fine with them. But if you cannot, you're not at a high risk of recurrence according to the OncotypeDX result.

Consider that 1 in 8 women in the U.S will develop breast cancer during her lifetime. That means that 12.5% of American women already have a double digit risk for breast cancer. Which is shocking to me but puts a 90+% chance of recurrence in perspective at least.

Jennie, I first met with an oncologist a few weeks after a lumpectomy and he suggested that I have the OncotypeDX test done as it helps determine risk of recurrence but, more importantly, whether chemo should be considered.

I had surgery at Cleveland Clinic and they routinely keep aside tumor tissue from tumor surgery in case genomic testing is ordered. [I suspect that that's standard practice everywhere. Or certainly hope it is.] So, when we agreed to have the OncotypeDX done, I just signed the request and the tissue was submitted for testing.

I hope and wish everyone considers genomic tests that could help one carve put a treatment plan. In my case, chemo was ruled out as 'not recommended by the test report. And we learned that I have a very low risk of recurrence (under 3% if I take aromatase inhibitors, under 6% if I don't) if the OncotypeDX is valid and the breast oncology world seems to think it is.

What was extra reassuring was that my oncologist said that he thought the risk number would be that low as well. That is, his 30 years of working in breast cancer oncology, had him calculating essentially the same approximate result. There are cases though where the genomic testing reveals a very different risk than what a clinician might suspect so it can 'catch errors' that could make a big difference in prognosis and treatment.

Please ask your oncologist about having genomic testing done. If you have a very low risk of recurrence, that can be somewhat reassuring. If you have a high risk, you can deal with it.

All of the statistics about breast cancer and older women are in the process of being reexamine as, it's only been relatively recently that older women started had mammograms. So relying on a thought that recurrence lessens with age is fraught with issues. It might turn out to be right but it's also possible that recurrences in older women just aren't identified (or treated) and thus not represented fully in the breast cancer statistical universe.

These are such important decisions that I think it's always good to also get a second opinion. Two oncologists concurred with my not taking anti-hormone therapy and it was important to me to get the second opinion.

Sent to CA. From my hospital Thomas Fairhope, AL.

I hope you consider getting tested for osteoporosis, given your mother's medical history. This is one area where lack of knowledge can put people at unnecessary risk and knowledge can lead to treatment.

For what it's worth, my oncologists aren't overly concerned about micro-calcifications unless occur with other cancer signals. That might vary from patient to patient or differing levels of dense tissue or something. But they don't routinely remove them absent other markers of risk.

Just a note that most insurance companies will only approve having a DexaScan every 2 years and not yearly.

ALL women over 50 should begin to have a DexaScan to keep an eye on the development of osteopenia and osteoporosis. ♥️

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 was pretty nuch the same as you were, not high numbers, but I did do the radiation after talking to my surgeon. The I tried the pills, but they did not agree with me in a cery cery negatice way. I had all the side effects to a very high degree, crippling me. I had some issues before, slight arthritis in my knuckles, overweight, and inflammation. These were all agrivated and blew up to the worst possible results. I could not walk, I was swollen, legs, feet hands, mood swings, very fark thoughts, it was awful. After 6 months and 4 different drugs, I finally threw in the towel and stopped the drugs. My onco told me all I could do was pray. To make it worse, this was all through covid and I could not see any of my doctors, only through the phone. I was depressed, but decided to go it alone. I went on a whole food plant based diet with NO oil, and lost 65 pounds so far. I walk 2 miles every day, garden hard, and I am enjoying life now more than I ever have. I am 69. I plan to lose another 35 pounds to be a peak weight. No more aches and pains, I sleep really well, and I can do whateve I want with ease. I still do not have good use of my hands, but that is the only lingering side effect I did not lose. I can use them, but cannot bend my fingers at all..... It is a choice for only you to make. I tried them and knew in 2 weeks that they were not for me. Good luck on you journey!!!! I wish you good health!