I had done everything “right.” I was very healthy and active, I did yoga and was a vegetarian and had regular PAPs, so it was really a shock. I had been complaining of symptoms to my family doctor for a couple of years and went through very early menopause. My issues were dismissed by my doctor; I did not push it.
I finally switched family doctors and my cancer was diagnosed within the first 30 days of seeing my new doctor. She sent me to the leading gynecological oncologist in our area. He had been in practice for 45 years.
I went through the standard course of treatment: Chemo, radiation, and surgery. It was pronounced that I was cured, and I was sent on my way. Everything was done exactly the same way he had been doing it for the last 20 years.
I am a reader and a researcher, so I knew the statistics and always prepared for the return of my cancer. I worked hard to get as healthy as possible and do whatever I needed to do.
My cancer metastasized to my lungs in 2014. It was only diagnosed because of a clever nurse practitioner who was paying attention to what I was saying and suspected there might be something going on. I explained to her that to have a chance I needed to find a new oncologist. I did not have the most effective care from a gynecological oncologist on the first go-round and didn’t want to risk my life to him again. My nurse practitioner and I talked about my personality and my preferences in a doctor and she found me the perfect doctor for me.
I began standard meds for lung treatment, and it was not working. My doctor ordered testing of my tumor tissue through Foundation One and of the mutations discovered they found out it was HER2+. Then he went on a search for clinical trials. Because my cancer was HPV this was a challenge. There just weren’t that many trials for me. I got lucky and found one in another city and was accepted. I was on the clinical trial for Herceptin® & Perjeta® in the treatment of HER2+ Cervical Cancer. Within three treatments two of my three tumors had shrunken in half.
So, it’s now 2020; six years later. I have been on IV chemo treatments since then. Sure, there have been a couple of bumps, sicknesses, a few minor setbacks, and med changes. My meds were switched to Kadcyla® two years ago and I went through a round of SBRT for the one stubborn tumor that didn’t want to go away. I have been NED (again) for 24 months as of this week.
I have been Stage 4 since 2014 and I am incredibly grateful to be able to say I have a fantastic life! I am healthy and regardless of my issues still one of the healthier people in my life. I was extremely lucky to realize early on that I need to be my own advocate and when I didn’t have faith in my medical team, I made a change. My oncologist now fights as hard as I do and is always one step ahead of my disease. He always has the plan for the next step ready and keeps it updated with new and exciting treatment options if I ever need it. He fights with my insurance company to get me coverage for meds that are not the standard treatments for cervical cancer. He treats me with HER2+ breast cancer drugs, and it has saved my life.
I advocate anyone who will listen to me to remember that you are the last word in your treatment. You must learn to read all the information, to find out all your options and to fight for what you need. There are too many books to read, laughs to have, wines to sip, puppies to pet and friends to hug to let other people make those decisions. Never Give Up.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.