Arlene Simpson is a cervical cancer survivor and patient advocate residing in Bothell, Washington. She was diagnosed in September 2021 and underwent external radiation, chemotherapy, and brachytherapy. She has been in remission for 3 years now. Arlene is a loving mom, a devoted wife, a financial services professional, and a dedicated leader in her church. She is very passionate about helping others and giving back to her community by volunteering in various ministries where she shares the importance of the HPV vaccine, getting annual exams and Pap tests and sharing her story to raise awareness, especially in the Asian American communities. In her profession, in her church, and in various groups she belongs to she emphasizes having a big “WHY” and purpose in life. She believes that being part of a community (like Cervivor) that understands and cares, along with having strong faith and a positive mindset, has gotten her through the many challenges not just in her cancer journey, but also in her many trials and tribulations in life.

Tell me about your experience being diagnosed with cervical cancer.

During the pandemic, I missed all my annual exams. Since I was living in Washington State at the time, I just decided to wait until I could get back to California to see all my medical doctors. In August 2021, I returned to California to celebrate my daughter's and my grandmother’s 100th birthday. I also scheduled my Pap test and HPV test. During the exam, blood was hemorrhaging everywhere so my gynecologist did a biopsy and an ultrasound. One week later, she called me with the news. I have had abnormal Pap tests, but every time I re-tested 3 months later, my results would be normal. I also had chronic endometriosis and dysmenorrhea, so my gynecologist never thought of cancer because the symptoms I had, such as constant heavy bleeding and pelvic pain, were “normal” symptoms that mirrored cervical cancer symptoms. I also had previous Laparotomies to remove enlarged “benign” tumors in the past. Never did I think that I would get cancer.

I was diagnosed with stage 1B3 cervical cancer and forged forward with the plan of chemotherapy, radiation, and brachytherapy with my awesome medical care team at Seattle Cancer Care Alliance (now Fred Hutch Cancer Center) and University of Washington Medical Center. My treatment was successful, and I am now 3 years in remission. I currently see my gynecologist and oncologist at the University of Washington Medical Center every 6 months for CT scans, bloodwork, and exams.

How did you get connected with Cervivor?

I was introduced to Cervivor after my treatment was completed by a fellow cervical cancer warrior who was also battling cervical cancer at the same time. I really wanted to be at peace and was not looking for a group, but things happen for a reason. I am so blessed that I logged on to that Creating Connections virtual meeting on that day.

What have you been working on related to your advocacy activities?

I have been an active member and patient advocate with Cervivor since 2022. I have attended several events and have spoken in various sessions. Cervivor has opened many doors for me with other sponsors like St. Jude and Genmab where I have done videos, podcasts, and interviews. I have also tabled Cervivor events in the Washington State area. I have also been working with my church and various Filipino American groups in California and Washington to help spread more awareness on HPV prevention and the HPV vaccination. At the University of Washington Medical Center, where I am continuing my care, I deliver women’s care bags every season or holiday to the women with cancer. My focus is to bring more awareness in the Asian communities. It is so rare to see Asian women vocalizing about their cervical cancer journeys due to the stigma of this cancer. The shame I carried because I had HPV. The hurt I felt from some family calling me wild and promiscuous. It was hard enough going through cancer but, to feel that you are not supported by your own family added more guilt and depression in my life. I hope to be one of those voices that will empower more Asian women to speak up and not be afraid or ashamed. 

What has been the most significant change you have seen in yourself since you've started this journey?

Sharing my story and raising my voice has opened the eyes of my own family. They are now able to truly understand how sharing my journey “in public” can be part of a healing process that can now begin. After years and decades of silence and shame, I can stand proud and embrace my story, my scars and become a strong example for others to follow. Cervical cancer is not my life…It is a part of my life that has forever changed me but my book is still being written every day. And, I live with gratitude, waking up ALIVE each day.

What is your advice about cervical cancer?

If you feel in your gut that something is wrong, please get checked. Sometimes symptoms do not just go away. It can be embarrassing talking to your doctor about your symptoms, but it is so important to tell them everything you are experiencing during your visits and treatment procedures. Do not be afraid, and know that there are others out there who support you and who will help you get through it. YOU ARE NOT ALONE!