Diagnosed with DCIS: How do I decide on 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.

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.

@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.

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.

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

May I ask where you obtain an Oncotype DX test?

OF course I meant it suppresses estrogen - the hormones that the cancer was being fed upon by being ER+ and PR+. The statistics I wrote were the ones I was told & yes I did google it & read many studies - back in 2018 when diagnosed. I get a DEXA scan annually and told her to get all the info she needed to make a informed decision. I did not mean to get into an argument to anyone.

@mylane, I can understand your worry about side effects. I'm glad that you have a chance to have a discussion with your oncologist to share your concerns. This is a good chance to have a frank discussion about the statistics, chance of recurrence and what the data shows specifically for you and your current medical status, like if you have pre-existing conditions to consider like osteoporosis or diabetes. You can then weigh that information with your lifestyle and preferences, including the things that bring you joy in life, like gardening, running marathons, knitting, or scuba diving.

These are all things to discuss and have a list of questions ready, for example:
- How does this medication reduce my risk of recurrence? By how much?
- What is my risk if I decide not to take the medication?
- What are the side effects of each of the drug options?
- Are there side effects that are more likely for me, given my health status?
- Can I switch medications?
- Can I stop the medication?
- XXX activity is really important to me. Will this drug affect my ability to do it?
- I'm most worried about ______________. Is that a concern?

What other question might you ask?

If you had the OncotypeDX test and the report from Oncotype listed your result as 4% 'risk of recurrence (loco-regional) within 9 years', that's a very low risk. Assuming, using the statistic accepted by oncologists, that aromatase inhibitors 'may' (that verb is important) reduce your risk of recurrence by less than 50%, the drugs would theoretically reduce your risk from recurrence risk from 4% to about 2.4%.

Put it another way. If you do NOT take the drugs, you have a 96% chance that the cancer will NOT recur 'within 9 years.' And the drugs 'may' only improve that to about 97.6%.

I know three women with similar OncotypeDX scores who declined anti-hormone therapy with the agreement of their oncologists. They are all over 65 years of age and tried the drugs, had side effects that, they felt, were quality of life issues for only a small increase in risk of recurrence.

These are personal decisions. But one way to carve out a path forward would be to get a second opinion from a different oncologist. You can also always try the drugs and might have no side effects or discomfort of any consequence.

I tried anastrozole and had side effects that were a problem. But I also had the OncotypeDX that gave me a very low risk of recurrence as well so stopped taking the drug as the risk/reward ratio wasn't persuasive. I did so though after consulting with two oncologists, both of whom concurred.

It is your body and your life and doctors can advise but they don't live with the consequences. And they frequently don't agree with each other either. So I hope you find the decision that gives you the most peace of mind...

The aromatase inhibitors do not "supress all hormones in your body" or people would die from taking them, given that there are hormones keeping us alive :‐).

Aromatase inhibitors block the production of estrogen. Thereby, depriving estrogen-fed cancer cells of their fuel, in a sense.

The current statistic cited is that aromatase inhibitors may cut the risk of recurrence of breast cancer by somewhere between 40-45%. That number does not apply to all breast cancers, some being much more aggressive, caught at a later stage, etc., so is a very rough "average."

Approximately 50% of the women who begin aromatase inhibitors discontinue taking them within the first five years for myriad reasons. Most who do, discontinue them within the first two years, usually because of side effects. This is known as the 'non-compliance issue' in the oncology world and several studies address it.

Google Scholar is a good search engine for research and studies related to the many facets of breast cancer treatment and recurrence stats.

The anti-hormone aromatase inhibitors and tamoxifen are powerful drugs and saving some lives. I hope that anyone whose oncologist(s) recommend them try them and, if side effects are negligible and/or the drugs easily tolerated, stay on them for the extra security they can provide, depending upon the type of cancer one is dealing with.

For those taking aromatase inhibitors, please remember that estrogen helps feeds bone renewal, so these drugs require paying close attention to any effects on bones. A recent DEXA scan would be wise to have as a basis for monitoring any changes to bone density after from taking atomatase inhibitors so they can be addressed.