Our lives changed when my sister called me early one evening. I had just arrived home and was caught up in the hectic time of getting in the door, bringing in groceries, my husband preparing dinner and my son completing homework. I actually asked my sister if I could call her back; which I did almost 20 minutes later.
She told me that she was going to be having surgery at the end of the week for an abdominal “mass”. I was totally shocked! As a nurse I immediately asked, what are your symptoms? Can you feel something? Do you feel sick? I had just seen my sister two months ago on vacation. She looked great. She said she did have some bloating, increased gas and some urinary frequency, but that was it. She said she just thought it was "part of getting older". What she actually recited were the symptoms she had seen on a billboard about ovarian cancer...we had no idea.
As sisters with a mom who died of breast cancer at the age of 34, we've always had routine mammograms since the age of 30, often thinking "will either one of us be diagnosed with breast cancer?" In our late 40’s I think we both felt we had dodged the "breast cancer diagnosis". We were well past our 30’s and 40’s, out- living our mom. What we did not know much about was the “genetic link” that can exist in families for breast cancer and that we could have an increased risk of ovarian cancer as well.
Knowing what we know now…we would have loved to have been aware of this information prior to a stage III C ovarian cancer diagnosis. The knowledge for closer screening for ovarian cancer as well as close screening for breast cancer came late. The option of having genetic testing to know more about our risks should not be overlooked. My sister was offered genetic testing after her diagnosis and it was recommended that I be tested as well - we are both BRCA 1 positive.
While there currently is no early diagnostic test for ovarian cancer, knowing your genetic disposition, following CA125 test results for increased trending and having a transvaginal ultrasound can help in early detection.
Talking with a genetic counselor is also important to help you with decisions and choices you may encounter. Prevention is so important! Taking an active role in your health information, your family history and discussing it with a doctor who listens is the key. Symptoms can be vague - but you know your body and if you feel something has changed don’t be afraid or be too busy to discuss it with your doctor or nurse practitioner. Do not settle for a "wait and see attitude". FORCE Facing Our Risk of Cancer Empowered is an organization with a wealth of information to increase your knowledge when making these types of decisions.
It's difficult for family members to have someone in their family go through chemotherapy. It can be and extraordinary experience and you look for ways to help. I found getting involved in ENACCT The Education Network to Advance Cancer Clinical Trials, was one way I could spread information to others who were going through or just starting their treatment. The treatments we have today for cancer went through clinical trials before they were approved, and it is important for individuals to know they have treatment options in clinical trials as well.
We are approaching three years this fall (2009) since my sister’s diagnosis, surgery and treatment. She is an amazing sister, wife, nurse anesthetist, aunt, friend, co-worker, daughter-in-law, daughter and sister-in-law. She always offers support to others and enjoys life. She's had some amazing doctors, genetic counselors, nurses and friends to help her through this journey...and it's a journey that continues. Faith, hope, love and knowledge, all gifts to share.
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