August 2013

The month of tests and waiting

August became the month of test, pokes, pricks, doctors, exams, and more waiting. I saw one doctor after another, one specialist after another, and had one test after another. All the doctors agreed that it was best to wait on the BRCA results before making a treatment plan.

The silver lining about having breast cancer at 29 is that it gets doctors' attention. In fact, two separate breasts panels met regarding my case specifically. Its pretty humbling to imagine a large group of doctors sitting around talking about my cancer specifically and deciding on a treatment plan. Every new doctor I saw already knew my case before I walked in the door - the radiation oncologist, the surgeon and the oncologist.

At this point we had the following information regarding my cancer - it was Estrogen positive, Progesterone negative, Grade 2, HER-2 negative. The ultrasound showed it measuring quite big but the MRI showed it looking smaller than the ultrasound. Nevertheless, all the doctors agreed that I had "troublesome breasts." Meaning, due the density and consistency of my breasts, it was hard for them to decipher what was cancer, what was suspicious and what was normal tissue.

I met with a breast surgeon to get a second opinion and he was the first one to straight up tell me that his opinion was a double mastectomy followed by chemo. His words still haunt me to this day, "You need chemo even if you remove both breasts, it only takes one cell to be missed during surgery for your cancer to spread." I have lived with the horror of those words since they were spoken. He said he recommended a double mastectomy regardless of the BRCA results due to my family history and the consistency of my breasts. He said that I would probably be doing biopsies every 6 months if I did not remove the breasts because it was just so hard to read my breasts from mammograms and ultrasounds. He made very valid points - points I did not want to hear but points I knew were true. So I left that appointment with the inclination that I would probably be losing both my breasts.

Exactly ten days after doing the blood work for the BRCA test, Dr. Christian called me with the results.  She said the good news was this was the fastest turnaround she had ever seen for results, the bad news was that the results were positive. (As a sidenote, my mom, who has fought cancer twice is not a carrier, so I really did not think that I would be a carrier. More on the genetic side to this later). so this was BAD news, but at least we could make a plan. Dr. Christian said she had already spoken to my other doctors and they all agreed that I should get a double mastectomy. Basically, the decision had been made for me, for which I was so relieved. It was what I had prayed for, I wanted the doctors to tell me exactly what I should do, I did not want to have to make the decision. Seriously, how could a 29 year old make the decision to have her breasts removed?? I am still glad the doctors made the decision for me.

So the next step was to meet with a plastic surgeon and decide what route to take for reconstruction. I told Dr. Christian I wanted the surgery ASAP and that I wanted the cancer out of me ASAP. Luckily my mom made a call to her plastic surgeon and they squeezed me in that same week. Truth be known, I always kind of wanted fake boobs - but this isn't how I had envisioned getting them...

So I met with the plastic surgeon and he said that the best results would come from a two step reconstruction process. The first step being tissue expanders at the time of the mastectomy and then months of expansion and then implants placed after the muscles and skin had time to fully expand. That became my reconstruction plan. I asked to look at pictures of prior patients to get a feel for what to expect. BAD IDEA. I left crying. My body was going to be mutilated. I would never look the same. I needed to come to terms with that. I am still coming to terms with that. I have come to learn that with breast augmentation, they have a lot more to work with; most of the time you get a "better you." The goal with breast reconstruction is to make it look "as normal as possible." You do not get a better than normal outcome, you just hope to not look mutilated forever.

The waiting game started again, this time it was a wait for my breast surgeon and plastic surgeon to coordinate schedules (they actually do a lot of surgeries together) and to get a surgery room at that time. Basically this became a logistical nightmare. But after an eternity of waiting, I got a surgery date - August 28, 2013 - almost a month after my diagnosis.

In the meantime, before making a call as to chemotherapy, my oncologist wanted to run one more test. The test is called an oncotype test. Basically its a test that examines a breast cancer patient's tumor tissue at a molecular level, and gives information about a patient's individual disease. http://www.genomichealth.com/en-US/OncotypeDX.aspx#.UzwpRU0o_IU. The Oncotype DX breast cancer test is the only multigene expression test commercially available that has clinical evidence validating its ability to predict the likelihood of chemotherapy benefit as well as recurrence in early-stage breast cancer. You want a low score - the lower the better. The oncologist said that after he saw these results, he could make a better decision as to chemo. Since I was having a double mastectomy, there was no need for radiation.

I was not really expecting the oncotype results before surgery. However, while grocery shopping one day, my phone rang and it was Dr. Christian. Her and I seemed to talk frequently these days, she is the most caring doctor in the world. Everyone else in the store was probably thinking about what to cook for dinner, but when I got that call, dinner was the last thing on my mind. She said that she had just got off the phone with my oncologist and that they had received my oncotype results that day and they both agreed that I needed chemo. My score was at a level that showed that my recurrence was likely and I needed chemo to decrease my chances of recurrence. She went on to say that she would like to put in the chemo port at the time of mastectomy so that it would be one less surgery I would need down the road. At this point, I was not even sure what a chemo port was, but if Dr. Christian said this was the best thing to do, it was the best thing to do. So I learned in a grocery store that I would be having chemo.

I wanted to cry. I wanted to yell. Why couldn't getting my breasts chopped off be enough? Why did I have to have chemo? I did not want to be sick, I wanted to raise my daughter. I didn't want to miss dance lessons and field trips due to nausea and chemo. I did not want to lose my hair. But this is what the doctors thought was best, and I had promised myself that I would fight this cancer exactly the way the doctors thought best. I wanted to see Gabrielle grow up. I got in the car and called Kevin with the news. I tried to remain strong and act like chemo did not scare the hell out of me, but it did.

So it became a waiting game until August 28th, I waited and waited...