It was an interesting intersection of my interest in family history and my disease. Before the meeting with the counselor, they sent me a family history form to work on. They wanted to know my immediate family, my parent's family of origin, and any other relatives I know of who had cancer of any type. Another important fact was the age at which they were diagnosed. Mom and I did our best to spread the word out to the extended family. The only known cases of breast cancer is one of my dad's sisters and one of my grandfather's sisters (my dad's paternal aunt). There were other forms of cancer here and there, but not very much.
We had the meeting with the counselor on Wednesday, June 30th. It was a bit hard to find the place-they stuck the genetic counseling department outside the hospital in a dinky building attached to a strip mall in the shadow of Zion hospital. We were a bit pressed for time because we dropped the kids off in Escondido at my mom's house while we went. I cut the timing kind of close, although we were a few minutes early. Both Eric and I are early-birds. We'd rather be early than late. Just the thought of being late stresses us out.
We finally found the building and checked in. We had to wait for about 10 minutes. I was kind of tired for not having slept much the night before. That, on top of finding out that my surgery was still 3 weeks away kind of had me drained. So I let Eric play with my iPhone. He started looking up chemo drugs on the internet on it. The counselor came out and took us into her small office. She asked the question everyone asks, "How are you today?" I said what I always thing, but rarely say: "Well, other than the cancer, I feel great!" She was really nice about the whole thing. When I told her that I had to wait for 3 weeks for surgery, she was surprised. She also encouraged us to keep calling for an earlier date.
Right from the beginning, she said that because of my age, she would recommend the genetic testing if I wanted it. I knew going in that I did. Not so much for my own decision making-I already know I wanted both breasts removed. But more so for my female relatives. I learned during the course of the meeting that it also could impact my treatment. Read on.
First, we went through my family history. She made a chart as we went through the family. For each person she wanted to know if they had any medical issues. One interesting aside...I have a niece with Turner's Syndrome. She said that babies in utero with Turner's have a 90% mortality rate. But once they are born, their symptoms aren't as severe as many other genetic abnormalities. It's kind of like nature knows that there is an issue with the baby's reproduction and does all it can to naturally deal with it by having the baby die in utero. So my niece is a true warrior who beat the odds!
Only about 10% of breast cancer is genetically inherited. The rest is a result of exposure to the environment, and genes just replicating in an incorrect way over time. That usually takes about 60 years to develop into cancer, though. So my age alone was a red flag for the medicos.
One thing I learned is that these 2 genes also predispose you to ovarian cancer. So if I were to test positive, there would be a whole host of issues to think about. Many women have their ovaries taken out. The genes are not linked to uterine cancer. However, since my cancer is hormone receptive, it is recommended that I take Tamoxifen after all of my treatment for 5-10 years to prevent any re-ocurrence. That drug is linked to uterine cancer. In that case, a hysterectomy may be recommended. They can do both removal operations laproscopically now and pull the organs out through the vagina. Wild. At least it wouldn't be like have another cesarean, being sliced open again. Ugh.
For those who know me--especially who know me from my birth activism days with the International Cesarean Awareness Network (ICAN), having prophylactic surgery is a disconnect. I've avoided medical intervention most of my life, to the point of having 2 babies at home! It is hard for me to swallow too. I've already elected to remove what they believe now is a "healthy" breast. (That opinion may change after they examine it. I know other women whose "healthy" breast turned out to have cancer in it). But a wise woman who is on a similar path as me recently said something to the effect of, "birth is normal. Cancer is not." So I am learning to lean more on the medical professionals and their opinions. Breast cancer survival rates are around 90% I'm going to go with what has been proven to work, even though it will be hard.
Would I have a hysterectomy if I tested positive for BRCA1 and/or BRCA2? Perhaps. I learned last week that chemotherapy will most likely throw me into menopause. I'm so thankful that I'm not younger, that I have 3 wonderful kids. Younger women who still have childbearing ahead of them have to make these decisions in the face of that. But cancer is scary. You just want it out. You want to remove all chances of it coming back, anywhere. To the point of removing healthy organs that you no longer need? Perhaps.
Being found positive for one of the genes could affect my chemo treatment as well. They would probably be more aggressive with it. Along with the results of the pathology report after surgery, they need to tailor the chemo to my particular cancer. Knowing if I have one of the genes is another piece of the puzzle to factor into the chemo cocktail.
Anyway, I'm all set to do the genetic testing. I could have had my blood drawn yesterday, but we just didn't have time. We had to get back to North County so we could get Olivier to his karate class. He was testing for a higher belt for the first time. I want to keep the kids' activities as normal as possible this summer. He had been waiting for this test day for months, and I wasn't going to have him miss it if I could help it. I can drop in at the lab at Zion anytime I'm down there, and I know I'll be there at least once or twice in the next few weeks.
Thank you for your prayers and support. I pray that you all are able to see God working in all of this. He is teaching me things daily about relying on Him and not myself. I pray that my will would be conformed to His, even if it means waiting 3 weeks for surgery. I've got to trust Him. The other option is to freak out. I like the first option better.