We are sharing survivor stories with our Teal Diva family all September and this week we are hearing from Karin, a 2 year survivor, Amber, an 8 month survivor, and Sara, an 11 year survivor. We are reminded that even though every survivor has her own story, we are all connected.
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Karin
In the midst of the Covid pandemic shut down I was diagnosed with peritoneal cancer in the ER after they ordered a CT scan on June 12, 2020, a day I’ll never forget. I was all alone in the ER and googled that type of cancer had a seven-month life expectancy.
I had only minor symptoms. For maybe eight weeks I felt a minor pull in my stomach whenever I stretched. It felt like I had done too many sit-ups or stomach crunches. Since we were all coping with the pandemic and being shut in, my husband and I were doing a lot of outdoor yardwork and I thought I had just overdone it. I finally went to my PCP after I started feeling a slight pain above my liver. She didn’t think it was anything to worry about but ordered an ultrasound. Once she got the results she ordered a CT scan but they could not fit me in right away and I was starting to go into panic mode so I asked my husband to drop me off at the Charlotte Atrium Main ER. Four hours later I was given my diagnosis. They kept me for a couple of days so that they could do a biopsy and drain my ascites. The final diagnosis was stage 3c ovarian cancer.
I had always had a fear of ovarian cancer ever since I heard about it on a news program years ago and would ask my gynecologist every year if they would run a CA 125 test. They would always tell me the same thing, we don’t run that test unless we think there’s something wrong. I have a very small family and had no history of ovarian or breast cancer. Both my parents lived to be in their mid-90s. After my diagnosis, genetic testing was done and it determined I have the BRCA2 gene. Because of my family history, everyone was surprised.
A dear friend of mine had just passed from ovarian cancer 21 months ago and only survived 17 months. When I received my ovarian cancer diagnosis I was completely shocked and just knew it was a death sentence. I was able to get into Levine’s Cancer Institute within a week and started chemo the following week. My oncologist kept telling me everyone’s cancer journey is different but I couldn’t get my dear friend’s passing out of my head.
I am very fortunate to have a loving and supportive husband who walked along my path with me the entire time. Because of Covid, he was not allowed at any of my doctor’s or chemo appointments or hospital stays but he would be on the speakerphone listening at all my appointments. He would be taking notes for me as my brain could not absorb it all.
I have always had a relationship with God but it has certainly deepened during my cancer journey. I look toward Him to guide me and give me peace. I began reading the Bible daily and now feel I have a closer relationship with God.
After completing three rounds of chemo, surgery, and three more rounds of chemo I was declared NED in December 2020. I am currently on Lynparza and have remained in remission. I still can’t believe my outcome is different from my friend’s.
I waited a year after my last chemo before opting for a prophylactic mastectomy. Due to my BRCA 2 gene I wanted to do everything to prevent a breast cancer diagnosis as well.
Somewhere along my journey, I heard someone say that having cancer is like having a gun held to the back of your head. It may never go off, sometimes you may forget it’s even there, but you always are reminded of it. About a year after my diagnosis, my husband and I went on vacation and I remember one day when I said to him this is the first day I haven’t thought about cancer. I miss the old carefree and fun-loving me. It’s been 26 months since my diagnosis and with each good CA 125, my anxiety seems to lessen. I love hearing survivorship stories and messages of hope and I want my story to give someone else hope.
We recently returned from a bucket list 7-week camping trip to Newfoundland. Again I found myself not thinking about cancer 24/7. I think I just need to travel more often. I miss the old me but I’m learning to love the new me. I don’t worry about petty stuff and have no problem saying no if I’m not up to doing something.
I still can’t believe there is no screening test for ovarian cancer. At a minimum, your annual gynecological visit should include a CA125 test so that a baseline is established for you. This is a simple blood test.
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Amber
Tell us about how your ovarian cancer was diagnosed.
My new job offered free preventive gynecological exams to their full time employees, so I went.
Where are you with your treatment now?
I am almost 5 months post chemo!
If could describe how you were feeling when diagnosed in 3 words, what would they be?
Confused, shocked, denial
What are 1-3 do’s and don’ts for handling the whirlwind that came with a cancer diagnosis?
Do’s: Ask your doctors everything, have a few close friends to be able to talk to
Don’t: Don’t hold it all in & don’t visit Dr. Google too much
What advice would you give to anyone newly diagnosed?
Just keep swimming
What is one thing that you could not live without during treatment?
My nurses, literally lol
What were some surprising things that you experienced (good or bad) when going through treatment?
Good: Didn’t have to shave my legs for months
Bad: The inability to eat spicy foods, and I really like spicy food
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Sara
In July 2011, I got a horrible pain in my abdomen that I thought would go away the next morning. Well, I ended up at my primary care doctor the next day. He sent me for a CT scan the same day, and the different tests went from there. I got in to see my gynecologist with the first images I had, and she blew me off at first saying I just needed to rest. So my primary care doctor scheduled an ultrasound that confirmed I had an ovarian tumor and that my left ovary had ruptured. I had surgery in the first part of August 2011, and my tumor was in a very early stage. I was only advised that I needed 3 rounds of chemotherapy. The chemotherapy started in September and ended in November. I was 23 at the beginning of everything and 24 by the time I was told NED. Years later, I found out I have a genetic mutation. PTEN. I was 30 when I found out about it. It affects breasts, ovaries, thyroid, kidneys, colon, skin, and cervix. In recent years, I've had a prophylactic DMX and a complete hysterectomy.