My name is Lauren McMasek and I was diagnosed with clear cell carcinoma ovarian cancer when I was 28.
2017 was a banner year for my personal and professional goals. In June, I started my dream job as a stream ecologist in a small non profit, and on August 5, 2017 I married my best friend and partner of 7 years. Leading up to the wedding, I had been eating super clean and working out really hard and dropping a ton of weight (easily 5+ lbs a week). The summer had been really hot, and our apartment did not have very good air conditioning, so neither of us really thought much about the night sweats, and I had a history of ovarian cysts, so the increasing pressure in my lower abdomen was, for the most part, a minor annoyance and rarely becoming anything more than mildly uncomfortable. We had a wonderful wedding, and after a very brief period of marital bliss (6 months and one week to be exact), we quickly jumped right to the “in sickness” part of our vows.
By January 2018, the pressure in my abdomen grew until I could barely walk. It took repeated doctors appointments with an increasingly annoyed doctor to finally get an ultrasound. The final appointment with this doctor resulted in my breaking into tears and begging her to believe me that something was very wrong. At that point I had become underweight, could barely walk and had chronic bloating. My doctor had repeatedly told me it was just a persistent cyst and that my bloodwork was all normal – my CA125 never rose above 15. From her perspective, she was looking at a non-smoking, non-drinking, 27 year old marathon runner; a person not in the age or health brackets to think these issues could be signs of ovarian cancer. When she finally approved me for an ultrasound, I felt so relieved. That feeling was very short-lived – my ultrasound technician gave me a hug as I was leaving, and less than 12 hours later I was on the phone with my doctor who had already made an appointment for the next day with an oncologist. This was the last time we ever spoke, as she closed her practice shortly after.
I remember sitting in my oncologist’s office with my husband and scheduling the surgery – the soonest appointment was less than a week away – February 14, 2018. We spent our first married Valentine’s day in the hospital where my 3 hour surgery took over 7 hours. The only solid memory of that day is waking up to my husband sobbing and asking the nurse for tissues to wipe away his tears. I did not know until much later how long the surgery took or how the oncologist would not look him in the eye as she explained that they had to take more tissue than they expected. Two weeks later on a Tuesday, we were back in my oncologist’s office listening as she laid out the path for chemotherapy six rounds, one every three weeks. I left the office with my bag filled with pamphlets, my planner filled with appointments, my head filled with confidence that in this modern day and age this will be no big deal and I will be back in the water looking at stream insects in no time. That Friday I got my port, and the following Tuesday I began treatment. My amazing nurses were so gentle around the fresh stitches as they were connecting me to the equipment; they doted on my every request. Hot chocolate! All the Snacks! More Warm blankets! During my 2nd treatment I mentioned that the next time we would be in the center, it would be my beloved partner’s birthday and the amazing oncology nurses brought in two GIGANTIC cupcakes with candles for us to celebrate. My cancer robbed us of some very important milestones, but gave us some of the most important and impactful memories that we have together. I relied heavily on my husband to get me to appointments, feed me and care for me. It was only through the love within my small community that I was able to make it through as much as I did. We only made it through 4 treatments before my body gave out and an unspecified infection put me in the hospital for a week.
During treatment, I met so many amazing women but always felt very lonely. There are very few women who undergo treatment for ovarian cancer in their 20s, and it became pretty common for people in my treatment facility to assume I had almost any other cancer other than ovarian cancer. The declaration of “you are too young for that!” grew old so quickly, and was a harsh reminder that there was not a whole lot of information about this cancer at this age. I was declared to be just unlucky. I only knew of one other woman in treatment who was not over 60, but she was still almost 20 years my senior. It was, and continues to be very surreal that this experience that is shared by so many thousands of women left me feeling so isolated from them.
Treatment was a whirlwind which I am still processing. I remember at one point someone asked us about our family planning and asked if we wanted to harvest any eggs. I remember thinking what an insane idea that was – to postpone my treatment in order to freeze some eggs! I still had one good ovary after all, and thinking of building another life when I was so focused on preserving my own was just too overwhelming. I don’t remember anyone explaining the impact that chemo agents can have on fertility, or that my cancer exclusively appears in bodies that also have endometriosis, making the path to fertility that much more complicated. Thankfully, our family plan at the time (and continues to be) was to spoil our nieces and nephews and enjoy the freedom of being childfree. I was not prepared for how having that choice taken away would make me feel, and I did not know very many women at the time who had to make decisions like that. I have been open about my fertility status, and it has led to a shocking number of women sharing their stories of loss and struggles with infertility. The stigma around gynecological health is something I had not been aware of before I was forced to learn, and I hope that by sharing my story, we can help lessen the taboo.
Genetic testing showed that I had no genetic predisposition and I had no family history of ovarian cancer. I speak openly about my experiences, especially with people who were assigned female at birth. It is so critical that we know the signs and symptoms of gynecological cancers and most importantly that we learn how to advocate for ourselves when we know something is wrong in our bodies. YOU know YOUR body better than ANYONE ELSE. If I had accepted my doctor’s dismissal, it is a guarantee that I would have had far more serious repercussions.
I really appreciate your building a base to share this kind of information. I wish I had known about the resources and wonderful humans who have worked through gynecological cancers before me, and I hope that my experience might help others feel less alone while they work to become healthy again.
With all my love,