(Note: If this is your first time visiting my page, thank you for your concern and support. You may want to read the pages to the left first, then read from below. My latest blog entries will feed to the top automatically. The most recent blog entries are also listed as links on the bottom left.)
Sorry I’ve been a slacker on the blog posts lately. There hasn’t really been anything to update everyone on though since I’ve been feeling great. I’ve had a couple of doctor appointments recently though so I thought I’d update everyone on that, and a couple other things.
I found out my genetic counseling results today. Mom came with me. I don’t think I’ve written about this before so I’ll give a little background first. I initially met with the genetic counselor about a month ago. I completed a very long family history questionnaire and they ran some blood work for the genetic testing, which they sent off to Utah, the only place in the country that performs the testing. After reviewing my family history forms, the genetic counselor said she didn’t think my breast cancer was hereditary since we have no family history of it, at least not close (i.e., up to grandparents). Surprisingly, only 10% of breast cancers are hereditary. The other 90% is caused from other factors, which aren’t really known but may include environmental factors, fertility drugs, etc.
There are two breast cancer genes, breast cancer gene 1 (BRCA1) and breast cancer gene 2 (BRCA2). Everyone has these genes. What they look for in the genetic testing are mutations in the genes. Mutations in BRCA1 and BRCA2 cause most cases of hereditary breast and ovarian cancer. If mutations are found, it would change my surgery plans and have implications for others in my family. For example, if a mutation is found that has a known link to breast and ovarian cancer, they would suggest a double mastectomy instead of a single mastectomy (my current surgery plans) and the removal of my ovaries by the time I’m 40 (not in my surgery plans). It would also mean that my sisters or other female relatives may want to consider the same surgeries as preventative measures. There are thousands of mutations that are known to have a direct link with breast and ovarian cancer. There are other mutations that don’t have a link with breast and ovarian cancer, and other mutations they are not sure about.
My results came back with no mutations in the BRCA2 gene, however they did find a mutation in my BRCA1 gene. Although it’s not one of the thousands of mutations that have a known link with breast and ovarian cancer and is instead one of those mutations they are not sure about. Out of the 1.3 million people in the US that have undergone the BRCA1/BRCA2 genetic testing, only 4 other people have the same mutation as me. Therefore there isn’t enough history or research at this point in time to indicate whether there is a link with breast and ovarian cancer or not. They have only been performing this genetic testing since 1994.
So the news today was good and bad. The good news is I don’t have any of the known mutations with a link to breast and ovarian cancer. But the bad news is that there was a mutation, which they don’t know much about. So what does this mean? They said they wouldn’t make a recommendation either way and that I have to decide on my own what I want to do. I have my next big chemo round this Wednesday and a follow up appointment with Dr. Limentani and we’ll ask his opinion then, but since there are only 4 other people in the whole country with the same issue, he may not have a solid recommendation. I’ll probably opt to keep my surgery plans as is but I have until the end of July to decide. The reason they recommend a double mastectomy for people with mutations in their BRCA1 or BRCA2 genes is because there is a much higher risk for re-occurrence.
The mutations that they don’t know much about are referred to as “genetic variants of uncertain significance”. There are ongoing efforts at the genetic testing center in Utah about these types of mutations and their link with breast and ovarian cancer. As new information becomes available, they will notify my genetic counselor and they will in turn notify me.
Herceptin / Heart Echo Test
I also had another appointment on Friday for my second heart echo test. The Herceptin treatment that I receive every Wednesday can cause heart problems, including reduced heart function, congestive heart failure, inadequate blood supply to the heart, inability to pump blood effectively, irregular heartbeats, high blood pressure, disabling heart failure, weakening of the heart muscle, and sudden loss of heart function. These risks are higher when Herceptin is given in conjunction with another certain type of chemotherapy called Anthracycline, which I’m not on, but they test for the heart problems no matter what. I did some research and for my particular treatment regimen (Herceptin with Taxotere and Carboplatin), I found a trial that showed only 2.9% of patients with my same regimen had to stop using Herceptin due to heart damage.
They test my blood pressure and pulse every week and there haven’t been any signs to cause alarm, but they do the heart echo tests throughout treatment just in case and to do more thorough testing.
Some other quick facts on Herceptin: The most common side effects associated with Herceptin are fever, nausea, vomiting, infusion reactions, diarrhea, infections, increased cough, headache, fatigue, shortness of breath, rash, low white and red blood cells, and muscle pain. The only side effect I’ve had from the Herceptin is low white blood cells, so that’s very good. The white cells are the ones that fight off infections as part of your immune system. But aside from getting sore throats occasionally and getting sick during that first round, I’ve been fine and haven’t noticed the low white blood counts myself.
Anyway, they performed my first heart echo test on March 31, the day before I started treatment, and just did the second one this past Friday. I should have the results by Wednesday but I’m not concerned so no worries.
Latest Chemo Eve Present
So, Nina started a lovely tradition right before my first chemo round, which has made things a little more fun. She comes over every third Tuesday, the night before my big chemo rounds, or what we call “Chemo Eve”. Each Chemo Eve, Nina, one of my chemomaids of honor, gives me a Chemo Eve present. I invented the term “Chemo Maids” in the beginning of my treatment as well. A chemomaid is like a bridesmaid but does nice things for me during my chemo treatments, such as cooking meals, doing me favors, going with me to my treatments, etc. I’ve had a lot of chemo maids over the course of my treatment. 😉 It’s just been something fun and silly.
Anyway, I’ve gone a little farther with the concept and have started giving myself Chemo Eve presents as well. My initial gifts to myself were a pair of Coach sunglasses, a new Coach purse, etc. Well this chemo round, I bought myself a new car! It’s a Lexus SC 430 convertible and super fun! I have told myself that this is not just an ordinary Chemo Eve present, it’s also a present to myself for not being able to get pregnant until I’m 35, which to me is justification enough. Anyway, here’s a pic of my new car! Well it’s only new to me, it’s actually a certified pre-owned.