Saturday, January 29

Fight Like Hell

I wanted to share this blog post Sister wrote.  Please pass it along.

Lance Armstrong once said, "We have two options, medically and emotionally: give up or fight like hell." I'm gonna go with fight like hell. How bout you?
Each year the government, along with private "investors" pay doctors and researchers to help find a cure for AIDS. So far, since the infection was first reported in 1981 by the CDC, there have been major breakthroughs. People can now live years on medication while being HIV positive and the disease not progress into AIDS for a very long time. Even without treatment one can learn that he or she is HIV positive and live for years before AIDS becomes a "hindrance" to them and they eventual die from it.
In 2008, AIDS research was given roughly 16 billion dollars globally. There are many studies being done on patients who are HIV positive, have AIDS already, and also on patients that have died from the disease. Prevention in many cases is possible.
This is not about AIDS. This is about 21,000 women in America who die each year due to lack of research, knowledge, and funding.
This is about cancer. And no, I'm not talking about breast cancer for the 80 billionth time. Breast cancer awareness is everywhere you turn. It has more followers on facebook than the President.
I'm talking about Ovarian Cancer. It is the same mutated cancerous gene as breast cancer but far less is known about it. 79% of women are diagnosed with ovarian cancer in stage IV...thats the last stage, for those of you who have no clue what I'm talking about.
I'm going to tell you what the reasons are that it isn't caught sooner.
  • One, because of the symptoms. By the time a woman has noticeable symptoms she's already in stage IV.
  • Two, there are really only two ways to know if you might have ovarian cancer. The first is with a transvaginal ultrasound, which is not routine. The other is a blood test called CA-125 which is, also, not routine.
Even if your CA-125 levels are off a bit, it still may not indicate ovarian cancer. There are a few reasons the levels could be out of balance. One is that you may have a benign cyst, the doctor will tell you to wait a few weeks and come back to check the levels again. But what if you already have ovarian cancer? Those few weeks are critical. The transvaginal ultrasound is a bit more reliable but not by much. This will also show what may be benign cysts, only if the cysts are without a doubt abnormal is your doctor going to not want to wait a few weeks and check back.
While your doctor is waiting, your cancer may be spreading and/or getting worse. Do you want to take that chance?
While Breast Cancer is a serious thing, a rather noninvasive surgery can be done. A small biopsy can be taken and sent off. To do a similar biopsy when Ovarian Cancer is a possibility they have to go in through your abdomen which becomes very invasive.
Research, or just years experience, has helped us gain the knowledge to make an "at risk" test called Brca1 and Brca2. This is also a blood test that looks at the genes consistent with Breast and Ovarian cancers to see if there is any type of mutation.
Breast and Ovarian cancer are hereditary. So if your grandmother had breast cancer you could be at risk for either of these. The more common it is among your family the higher your chances are of developing one of these diseases.
The Brca test doesn't mean that you will definitely get cancer, nor does it mean that you already have cancer. What the Brca test will do is tell you if you are at risk of maybe later developing cancer.
What if the test says you are at risk? Well, for one, your medical insurance company could treat you differently, your rates could change because you are "at risk". How is that even fair?! What can you do to keep from maybe developing cancer? Have surgery. Have your ovaries removed. If you are at high risk that's the only way to ensure you won't develop the disease.
They think, based on the small amount of research done, that taking the birth control pill lowers your chances. But not by much. You are still at risk, you can still develop it, and you could still die from it. Remember that by the time you show symptoms you're often in stage IV.
So how is it that more research isn't being done on this, "silent killer"? Each year billions of dollars are spent on research for other things. Things that can be detected early, treated, and things you can live with, healthy and happy, for years. Not even half of that is spent on ovarian cancer research, roughly 6 million dollars a year.
I'm currently trying to find an Ovarian Cancer research study to join. Anything I can find that I'm eligible for, not only for my benefit but for others as well. The studies I've found are being done on women that have been treated once and the cancer is recurring. Those are the few lucky women that happen to detect the disease early somehow. I'm more than willing to do whatever it would take to be part of a study that could help doctors understand, lower risks, or treat Ovarian cancer. If there was more of an awareness, more funding, more research, I could be part of that. I could be part of saving a life or making life a little better for a sister, a mother, a daughter, an aunt, or a friend.
You see, I'm at the highest risk for developing ovarian cancer, as is my sister. Our aunt passed away two months ago at the age of 41 due to ovarian cancer. She died on December 2nd. The first time she had any symptom of the disease was October 2nd. In further research we have since found that our great-great grandmother and great grandmother also died of this disease. Our great grandmother was just 31 years old when she passed, leaving behind her husband and young children.
My options right now are limited. I'm 22 years old, I have no children and there is a very likely chance I'll later develop ovarian cancer. I could get the surgery and never have kids. But who can make such a decision on such limited information at the age of 22? I know I can't.
So my hope is to raise a little awareness for those of you that may be unaware of what this disease is about and how many lives it claims. So that you can tell others and be aware of the signs so it doesn't claim more lives.
I know what this does to families. I know what it feels like to go through it and watch it happen. I wouldn't wish that on anyone, so please be aware. Listen to your body. Don't dismiss little things, they can add up. And seriously, talk to your doctor! If we can raise the awareness and get more research done and learn more about this. My kids might not have to go through what my aunt did, or their kids, or my niece, or someone you love.

You can look up Ovations for the Cure there you will find all the symptoms listed. Along with other ways to help raise awareness. Please don't dismiss this, its very serious. Just take a second to check it out.

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