Aromatase Inhibitors: Did you decide to go on them or not?

The Breast Cancer Index and Prosigna Assay consider 5% to be "high risk." The Oncotype considers it low risk. So even at this basic level, decisions are confusing. It is good to remember that with hormonal cancers, risk continues to increase over the years. @jaynep my score was 8, and I did 5 years of Femara, with few problems. Someone else might make a different decision. My own view is that it is good to try a med before declining, because many do not have side effects that are troublesome.

There are two numbers you receive from the OncotypeDX. The "Recurrence Score Result (RS) and the "Distant Recurrence Risk at 9 Years." So I'm guessing that, in your case, the former is 13 and the latter is 4%? [My numbers were 9 and 3, respectively. The risk number is derived from the RS by some OncotypeDX algorithm but is not a linear, direct calculation from what they told me.]

That's good news and I hope it provides a bit of comfort. You might decide to 'throw everything at" the remaining cancer risk, or not, but take comfort that that cancer doesn't put you squarely in the country-wide risk with people who might have comorbities or negative lifestyle factors that you know don't apply to you.

I found the OncotypeDX test very helpful. For one thing, even if I took anti-hormone therapy drugs, I'd still have the remaining 3% risk in theory. I decided that the additional 2 percentage points of "no drugs and 5%" was my path. And if the cancer does recur, I'll know it had a 3% chance even if I had taken the anastrozole. Cancer is like a lot of situations in life where there are no perfect decisions except, maybe, in hindsight.

Did your cancer metastasize.? If not what is the reasoning for continuing with an aromatase inhibitor?

Do you mean the oncotype dx test? Yes, that has been submitted. I see the radiation oncologist on May 9th and the medical onco on May 12. However, the hospital system here posts test results before you see the doctor and my score is 13 and there’s a notation that nine year recurrence with AI and Tam only is 4%. Not sure what all this means but I guess I’ll find out.

Do you mean the oncotype dx test? Yes, that has been submitted. I see the radiation oncologist on May 9th and the medical onco on May 12. However, the hospital system here posts test results before you see the doctor and my score is 13 and there’s a notation that nine year recurrence with AI and Tam only is 4%. Not sure what all this means but I guess I’ll find out.

If there are cancer cells found, there may be enough for submission to a genetic testing firm that can give you its recurrence risk analysis. The result might help you and your oncologist look at a treatment path that seems appropriate for you, rather than relying more on the standard industry-wide protocol. Just a thought.nof course, I'm hoping none are found because none escaped the surgery the first time.

First of all, I want to send a hug out to you and let you know you are not alone and surrounded by so many women who are and have gone through this. I will be praying for healing for you on 4/29. I've just marked it on my calendar. You'd be surprised how prayer works. Well, it was a very personal experience for me with the Radiation, my numbers were low, but of course my surgeon encouraged me to go see the Radiologist, which I did. But what really changed my mind was I was not going against science or what may indeed be a good and recommended treatment, I really studied about it and with what I've seen in other women after the treatments, something said not to actively pursue it. Again, my numbers were low, less that 9% so I opted not too. Please listen to your doctor and look at your own situation, and you will make the best decision for you. I have been on Anastrozole for almost 3 years and I am a active 63 yr old woman, and I have had a bit of tiredness at the beginning, but no other side effects. My oncologist says I should be a poster child for Anastrozole. But because I am still working so much I really don't have time to think about any aches or pain, I'm of the mindset, mind over matter, but stay active, exercise and eat right, and get good sleep if you can. Please let me know how your appointment goes and I will be thinking and praying for wonderful things to happen. Love and Life

Dear Sister Warriors, I'm just so encouraged by all of your words and experiences, and the connection we all share with this darned old breast cancer. I'm 64 years young and own my own business, so I'm so grateful to have the energy to rise and shine everyday at 6:00 am and work until 6:00 pm. Three years ago I got the same horrible news that each of you received- I'TS BREAST CANCER! After discussing with my doctor the next steps, and making a decision of how to proceed, I went to my car and just cried. I called my partner at work, and told him and there was silence, then he said WE WILL GET THROUGH THIS. I cried even more. My cancer was not an aggressive cancer, I had a lumpectomy, and after that, they found some cancer cells around the lumpectomy, so they suggested that I remove the breast. I asked about the other one and they said I would have to have a mammogram every 6 months, so I said take them both. I opted not to have radiation as treatment, but have been on Anastrole for 3 years now. I've changed my eating habits, I'm exercising more, and paying attention to my body instead of taking it for granted. I now am making time for me, and not just going through the rat race chasing the cheese. It is so important to make the journey mind over matter. If you think positively, you will beget positive reinforcement back. Believe in your healing, take care of yourself, be mindful of all your experiences, and know that each of us have each other to talk with, to cry with and especially celebrate those moments in life with. Make your journey count and the pains and anguish you face daily, will become less important than the accomplishments you make each day.

Love to all of you sweet sisters, blessings for calm, peach and happiness in each of your lives. God Bless.

This sounds very similar to my case. My surgeon, however, thinks she can revise the original lumpectomy. Surgery is scheduled for 4/29. I have an appt set for a medical oncologist and the rads doctor’s office is supposed to call me this week. May. I ask what caused you to skip the radiation? And do you have any side effects from AI?

There is a lot of variation. I have tests that go up, then down, then up. You have to look at trends. I actually made a chart of all my tests, every two years, since 2002!