Gynecological Cancer Awareness Month: Marianne’s Story
September 8, 2015
By: Marianne Stephan
It was September 7th, 2012, in the 3pm hour and I was sitting at my desk at work. An email came in from my oncologist with the title: “BEAUTIFULLY CLEAR SCAN!!!!!” She had just told me I didn’t have cancer anymore!
September is not only special for me because it was when I got my cancer-free status after a nine-month battle against stage IV endometrial cancer in 2012. September is also Gynecological Cancer Awareness Month. Endometrial cancer is cancer of the uterine layer, this and uterine cancer are considered rare amongst young adults. For those of us who have advanced endometrial/uterine cancer at a young age, the loss of fertility makes it especially devastating.
I started 2012 on such a high. I was actively going through a weight loss journey, which led me to be at my lowest adult weight ever. I was a regular at the gym (my friends teased that I was the mayor of our gym), training for the marathon-weekend 5k despite a tear in my knee that would need surgery, and best of all, January 1st 2012 was the day I had health insurance for the first time in eight years. Yes, eight years. Perfect timing.
On January 26, 2012, I was told I had cancer. It was just two weeks before my 33rd birthday.
It was earlier in 2012 on January 9th when, unbeknownst to me, my cancer journey began. The night of the 9th, at the gym, I assumed I started my period. As someone who was diagnosed with PCOS (polycystic ovarian syndrome) in my teens, abnormalities surrounding my period were not new to me. However, my abnormal bleeding was severe and my gynecologist surmised I had fibroids. She gave me multiple courses of medications to stop the bleeding, but it never stopped. I was then scheduled for a D&C (dilation and curettage). The sonograms I had before the D&C all showed masses on the inside and outside of my uterus (at the time this was believed to be internal and external fibroids given my age and symptoms).
My gynecologist called me to come into her office. The pathology from the D&C told her that I had endometrial (the lining of the uterus) cancer, and beyond that, not only the uterine lining was affected but the entire uterus. I would need to have a hysterectomy, at 33. Always wanting children, but not having them: in the last three years, that is the part that has hurt the most.
I was typed stage II before my hysterectomy. My entire uterus was compromised and would have to be removed, I had a cervical tumor, and the cancer had spread to my liver. The seven and a half hour surgery was successful, but my oncologist found during the operation that my cancer had spread much worse than tests has indicated. After surgery I was given a stage IV status and a treatment plan that involved six rounds of chemotherapy. After all the taxol and carbo, along with the laundry list of side effects, I was able to go back to work and start living life normally again after facing cancer. About a month after I got the email that changed my life telling me I didn’t have cancer anymore, I was put on an estrogen blocker to ward off any future cancer I might get as someone who had had estrogen receptive cancer. The back pain I got from that medication was so bad, after torturing myself for four months, my oncologist brought up my lack of quality of life and how she wanted me to have some.
It has not been easy trying to survive and live a “normal” existence in the last three years. It is extremely difficult if I’m being honest. I live with chronic pain. I have a slew of doctors’ appointments for the multitude of issues I have relating to having had cancer and the cancer treatment I was given three years ago. Not to mention the side effects that come from having gynecological cancer: infertility, menopause, sexual issues, to name a few, and how the combination of these things can affect dating, family, and work issues. The emotional and mental issues aside, the physical issues can be very draining on their own. Add stress to that and just functioning on an everyday basis is something that is hard to imagine unless you have faced something that hits you like this. In spite of all the pains and challenges I’ve faced over the last three years, I have found that this part of my life has been much like a rollercoaster ride. Sure, it’s scary, but I am not on the ride alone and while there are many drops, there are also many high points.
Some of the high points have been becoming involved in the young adult cancer community. Becoming a patient advocate, volunteering, blogging, and especially talking about not only endometrial and uterine cancer but gynecological cancer as well. Gynecological cancer is still a topic that is facing that taboo that breast cancer did in the 1970s and earlier, before breast cancer patient advocates spoke up about the issues they face with breast cancer. As young adults who have faced gynecological cancer, we have so many unique issues, just like our sisters and brothers with breast cancer and our brothers with testicular cancer, and it is so important that we as a community are speaking up about them. We cannot be embarrassed or ashamed to talk about gynecological cancer or the issues that come from these types of cancers. If we are going to do our part to eradicate this disease, we need to educate people about it, and we need to keep the conversation going!
