On June 30, 2013 (only 10 days after my initial breast cancer diagnosis), I went to see an oncologist. To say I walked out of there devastated, would be an understatement. I went from Stage I to Stage II (because the size of the tumor was originally measured at 1.8cm on the ultrasound, then the MRI measured it at 2.2cm. Anything over 2cm is considered Stage II.
I immediately broke into tears, but was happy to hear her reassuring words. Something along the lines of “This is a good cancer to have (ER/PR+). You are going to beat this and live to be old.” Then she followed it up by saying that because of my young age (45 y/o) she suggests I treat it as aggressively as possible. That meant 4 rounds of chemotherapy, one every three weeks.
I went to my car and broke down. I was devastated.
At my followup appointment with my surgeon the following week, he said something to me that really made me think. As far as the oncologist made it seem, I had no choice but to do chemo. My surgeon said to me “Make sure that the benefits outweigh the risks.” Then he proceeded to tell me about tests (for ER/PR+, node negative breast cancer) that can predict my risk of recurrence. The industry standard is Oncotype DX, which tests 21 genes, but he wanted to have me do a MammaPrint test, which tests about 70 genes. He said that it gives a more definitive answer, where as Oncotype DX sometimes has a gray area.
So one week after my mastectomy, my surgeon sent out tissue samples of my tumor for a MammaPrint test. The two weeks of waiting for the results was agonizing. I prepared for the worst, but prayed for the best.
When the results came back, I was so relieved. The MammoPrint test indicated that I was “Low Risk” for recurrence. It was 10% and with hormone/endocrine therapy it could cut that percentage in half down to 5%. On the second page of the MammaPrint report it specifically stated “No expected benefit from chemotherapy, endocrine therapy further reduces risk.”
I was ecstatic and could not wait to talk to the oncologist.
Much to my surprise, the oncologist still insisted that I do chemotherapy. She told me she does not trust the results of the MammaPrint and that she thinks my recurrence risk is considerably higher. Since the Mammaprint was so new, I could understand where some concern may be, but to flat out say she doesn’t trust it and I should just get chemo anyway, just did not sit right with me.
So I suggested getting the Oncotype DX done. I wanted confirmation. I was not ready to just jump on board the “chemo train” without knowing that I know, it is the right thing to do. And this oncologist was not convincing me. When I suggested the Oncotype DX test, her response was “I would not suggest doing that for you, because it will probably come back inconclusive.”
I had her order it anyway.
Then she wanted to set me an appointment to start chemotherapy in two weeks. “You can always cancel if you change your mind.” … How about we DON’T schedule anything now and if I change my mind THEN I will set the appointment. The way she handled the whole thing just did not sit right with me. I was prepared to do chemo if I felt I needed it, but I wasn’t convinced.
Two weeks later, the Oncotype DX results came in – Low Risk 5%!!! It absolutely confirmed what the Mammaprint said.
I then set an appointment for a second opinion with one of the most respected local oncologists. She was so thorough and reviewed all of the tests and she even called a scientist at Oncotype to discuss a certain part of my test. Her recommended treatment plan included 10 years of hormone/endocrine therapy. That is a medication that actually blocks estrogen from clinging onto any cancer cells that may still be in my body. Since my cancer is hormone receptive, the theory is that without estrogen the cancer cells can not grow. This is a good thing.
We discussed getting my ovaries taken out, verses taking another prescription. She said that hormone therapy + removal of my ovaries would be the most effective course . I also did a lot of research and talked to anyone with any breast cancer treatment knowlege. And even though I did hear “You should get chemo ‘Just in Case’ there are any microscopic cancer cells left.” from a few people. It just did not make sense to me to fill my body with poison, when the Tamoxifen + ovary removal would be just as, if not more effective.
It wasn’t easy and I had a lot of sleepless nights trying to decided what to do about chemotherapy. In the end, I chose not to do chemo and start on the hormone therapy. I am 6 days into taking Fareston. It has a ton of side effects, but I am staying prayerful that they will be minimal for me. Every time I take my medicine I say a quick prayer of thanks to God for healing my body and keeping the side effects minimal to non existent. So far, so good. =)
One thing I have learned is that every woman’s breast cancer is different. Therefore so should their treatments. I trust in the knowlege of the doctors I see, but no matter what, I will be the one to make the decisions that are right for me. I don’t take this responsibilty lightly and feel it is important to educate myself. After all, it is my life and health that I am fighting for. So instead of blindly listening to a doctor’s suggestions and following a treatment plan I wasn’t comfortable with, I did a ton of research and found that my gut feeling was right. I would not have been able to make this decision without the MammaPrint and Oncotype DX tests.