I was featured in my local newspaper this morning in their front page piece on the Supreme Court ruling against Myriad Genetics. The story is kind of a mess – many many errors. I wrote a letter to the editor clarifying some of the info; hopefully it will be printed tomorrow.
Still, it’s always always good to put a real face on a story like this – if my story can convince even one person to get tested, then I’ve done my job!
Below are words from our fearless leader, Sue Friedman, on the amazing UNANIMOUS decision of the Supreme Court against gene patenting, specifically against Myriad’s patents on the BRCA1 and 2 genes.
Today the United States Supreme Court made history when it unanimously ruled that the Myriad Genetics’ patents on the BRCA1 and BRCA2 genes were invalid.
FORCE agrees with the Court that genes – as products of nature – should not be patented. FORCE filed an amicus brief in support of the ACLU and testified to the Patent and Trademark Office about the burden that gene patents place on members of our community.
So what does this mean for our community?
This morning I went for my CA-125 blood work. I know this test isn’t entirely reliable, but I really would like some confirmation that there is or isn’t something wrong with me right now. If it shows up normal, then nothing will really be confirmed. But if it’s off the charts, then it should be a true indication that there’s some type of cancer might be growing. The results should be back in a few days.
Well, the wheels are in motion, I suppose, and I’m already feeling completely overwhelmed. Today I saw my gynecologist. She did an exam, but didn’t find anything that would be causing my cramps or other symptoms. She had me schedule an ultrasound and a CA-125 blood test. She also had me schedule an appointment with a gynecological oncologist who would perform the hysterectomy. And, she had me schedule an appointment with a medical oncologist who will help me determine what sorts of HRT are available to me. Because my breast tumors were estrogen positive, it’s possible I won’t be able to take estrogen after the hysterectomy. My gynecologist flat-out told me that this will be a hard road if I can’t take estrogen – there will be a lot of trial and error in adjusting other sorts of medications that can help with hot flashes, insomnia, and other symptoms of menopause. We’re both hoping that because I had the mastectomy and there’s such a minute chance of breast cancer recurrence, that I will be able to take estrogen anyway. Here’s my schedule:
June 20: ultrasound and blood work (to check for possible existing cancer)
July 3: gynecological oncologist (to consult and schedule hysterectomy) – everyone says this guy is the best laparoscopic surgeon!
July 17: medical oncologist (to consult about hormone replacement therapy)
Once I see the gynecological oncologist, I’ll see when he can schedule me for the hysterectomy. If he says he can do it by the end of July, then I’ll reschedule the Stage 2 breast revision surgery (currently scheduled for July 26) until winter break. I feel like I have to get this hysterectomy done and over with. Every little twinge of a cramp makes me feel like I have one foot in the grave.
The National Ovarian Cancer Coalition has a motto: “It whispers, so listen.” This means that the symptoms of ovarian cancer are subtle; you have to listen very carefully to your body in order to determine if you are indeed suffering the symptoms. They include bloating, pelvic or abdominal pain, trouble eating or feeling full quickly, frequent urination, fatigue, upset stomach or heartburn, pain during sex, and menstrual changes (find a complete description of symptoms at NOCC).
The reason I’m writing today: I have had several of these symptoms for the last three or four months. I’ve been wanting to write this entry for a while now, but I just haven’t been able to face what this could all mean. I should also say, before my husband panics, that I have an appointment with my gynecologist on Wednesday.
I’ve been telling myself that there are lots of reasons I could be having these symptoms; this is probably why they say that ovarian cancer whispers – these symptoms are ones that most people probably experience at various times, possibly even on a daily basis. Here’s how I’ve justified the symptoms I have as normal:
1. Pelvic/abdominal pain: I’ve felt soreness, like mild PMS cramps and sometimes even like an extremely mild labor contraction, consistently every day all day for a few months. I tell myself that it’s from my IUD, which has perhaps moved or is loose, or maybe my body has decided it doesn’t like it anymore after 18 months.
2. Upset stomach/heartburn: I have never in my life had either of these issues. I’ve never had indigestion or anything. I can eat anything and not get sick – stomach of steel, I always say. But lately I have been getting heartburn. I tell myself this is either from age or it’s from some combination of new medicines I’m taking.
3. Trouble eating/feeling full quickly: I go through periods where I am hungry constantly (like today), but then as I start eating, I begin to feel almost nauseous. I tell myself that this is because I’ve made major changes to my diet (a lot less processed food, sugar, chemicals, preservatives, etc) and that my stomach just isn’t sure what to make of all of this.
4. Bloating: I’m eating way more fruits and vegetables that I ever have before, and I’m also drinking a lot more water. So I chalk this up to extra fluid my body isn’t used to.
5. Pain during sex: Since I had my baby two years ago, I have had this problem. I told my previous gynecologist about it right after the baby, and after an exam, she said she didn’t see any reason for it; she recommended using lubrication. Over a year later, I still have this problem.
6. Menstrual changes: My period is like a freakin’ murder scene. I tell myself that this is because of the IUD, and it probably is because that’s when it started, and it’s a known side effect from a paragard.
So, there you go. What concerns me the most is the pelvic/abdominal pain. I know it’s not normal to have that all the time, even if it is bearable. And I suspect mainly that this is all psychosomatic – I’m really worried about planning the hysterectomy, it’s on my mind 24 hours a day, and it’s probably affecting me physically. Otherwise I feel great. People have been commenting to me that I seem brighter lately, cheerier – friends have even noticed it on the phone!
But on the other hand, maybe my body is whispering to me. Now that I was diagnosed with BC at such a young age, it would not surprise me at all if this turned out to be cancer. I lucked out big-time with the BC. It was caught early and I didn’t need any treatment. But I’ve never heard of anyone not needing treatment with OC. If they find something, I’m headed for chemo. And then the hysterectomy will be the least of my problems.
Blogging BRCA 