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Diagnosed with DCIS: How do I decide on treatment?

Breast Cancer | Last Active: Mar 20 10:00am | Replies (345)

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@mylane

My Lane I had surgery July 22 invasive ductal carcinoma stage one and grade one oncotype test DS ER positive. Test came back four, no chemo and I said no radiation due to other problems that I have. My Dr. Would like for me to take a pill for five years . I will go back again Friday to talk to him again, i still do not want to take the pill. I lie awake at night worrying about my decision. I’m 72 years old just want to enjoy what life I have left.

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Replies to "My Lane I had surgery July 22 invasive ductal carcinoma stage one and grade one oncotype..."

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...

@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?

@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.

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!