 September is Ovarian Cancer Awareness Month and SheHive founding member, Amanda Crowell Itiliong, is one of those ladies you know who has it. She balances her time being sick, helping with the community, and speaking about cancer and wants the SheHive community to be as educated about this issue as we can be!
 
September is Ovarian Cancer Awareness Month and I’m one of those ladies you know who has it. Since I balance my time being sick, helping with the SheHive, and speaking about cancer, I wanted to reach out through the blog to make sure our SheHive community is as educated about this issue as we can be! At this point, a few of you reading this are excited to tell me about a treatment option or cancer cure you know about. Please read this first. This post isn’t actually about me - it’s about you - so keep reading. While most types of cancer have seen dramatic improvements in treatment and lower mortality rates, ovarian cancer hasn’t seen much improvement in the past 30 years for a few primary reasons. Even if you are getting regular, annual gynecological exams and pap smears, you are not being tested for ovarian cancer. It might sound unbelievable in modern times, but there is no diagnostic test for ovarian cancer. That’s why you have to know the symptoms for yourself and follow-up if you have any of them. Ovarian Cancer can be tricky because the symptoms are often pushed aside. Symptoms can sometimes be subtle, or they can seem like something else is the problem. We hear from women all the time that they thought it was a problem related to menopause or a bladder, stomach or intestinal issue. Another challenge is probably the result of how many of us were socialized when we were younger. We’ve been trained that complaining is rude and so anything that isn’t dramatic, we tend to try to ignore or at least keep to ourselves. I’m here to tell you that not only do I wish I had known the symptoms myself before I was diagnosed, I also wish that I had told others in my life about what I was feeling. Maybe someone who loves me would have encouraged me to go see a gynecologist and follow up if they heard what was going on with me. Early diagnosis is what gives a woman the best chance of living a long and healthy life after ovarian cancer. In case you need it, I’m officially giving you permission to complain because it can save your life! If you notice one or more of the following symptoms that is new or unusual for you for 12 or more days out of a month, don’t panic!, but make an appointment with your gynecologist to follow up. Ovarian Cancer Symptoms
While it typically affects older women, even young girls and young women can be affected. I was first diagnosed at age 29. Even if you don’t have ovaries (such as after a total hysterectomy) you can, unfortunately, still get ovarian cancer. It’s called Primary Peritoneal Cancer and the treatment and prognosis is much the same as the most common form of Ovarian Cancer. About 20 - 25% of women with had a hereditary connection to the disease from genetic mutations such as BRCA1, BRCA2 or Lynch Syndrome, or from a close family history. Most cases of ovarian cancer however are just the result of an unlucky random gene mutation.
Ovarian cancer can happen to anyone who was born with ovaries and it's never anyone’s fault if they get sick! Unfortunately, recurrence of ovarian cancer is the norm. About 80% of women who go into remission following initial treatment experience a recurrence of the disease. This is my fourth time living with ovarian cancer in 9 years. I’ve had more high highs and low lows in that time that you can probably imagine (unless you've also had cancer 4 times). There have been times when my doctors and I thought my death was imminent, and other times you would have no idea that I was ill at all. Cancer can look so many different ways to an observer. Personally, I don’t “fight” cancer, and war metaphors don’t make any sense to me. Cancer is just a part of my daily life (my reality) as a survivor. With cancer you become a survivor the moment you are diagnosed until you die. Here are a few other things I think everyone should know about cancer survivorship. I'm proud that the SheHive has attracted so many strong women who are also survivors! I hope I’ve made the case clear enough for you to understand and remember the symptoms to help yourself or a woman you care about. Our best tool to save lives is early diagnosis! If you have questions, need any help with resources, or need support for yourself or a loved one please let me know at acrowell@post.harvard.edu! I’m happy to help when I can! For more information, to support ovarian cancer research, or to help women like me who are living with ovarian cancer, please visit http://mioca.org or https://ocrfa.org. |
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