Learn About This Disease From Survivor Sarah Lovell

My name is Sarah and I am a mucinous ovarian cancer survivor.
My symptoms started in March 2020, just after my 39th birthday. I had been having some abdominal pain and a feeling of fullness. I noticed that my stomach looked more distended. But I attributed it to getting older and not watching my weight. I developed a need to urinate frequently, but I am a teacher and bathroom breaks are a luxury. So, I ignored it. Then I started feeling weak doing everyday tasks.

The Diagnosis and Journey

I continued to ignore all these warning signs, thinking they probably weren’t anything serious, until one night I woke up in terrible pain. I hobbled out of bed and called for my husband. I knew something was terribly wrong and I needed to go to the ER. But because we had a young child at home, I decided to wait until morning.
When I got to the hospital the next day, the doctors ran tests, and an MRI revealed a large mass, the size of a watermelon! I was referred to Dr. Dwight Im, a gynecologic oncologist at Mercy Medical Center in Baltimore. He said the mass needed to come out as soon as possible. Time was of the essence because the COVID-19 lockdowns were beginning and surgeries were starting to be limited.
Thankfully, Dr. Im advocated for me and the hospital approved my hysterectomy. My appendix, omentum, and lymph nodes were removed. I was left with an 8″ incision. After the surgery, I learned that the tumor had spilled both before and during the procedure. Because of this, it was recommended that I complete chemotherapy to “mop up” any cancer cells that might have escaped.
A week later, I received the pathology report showing that I had stage 1C2 mucinous ovarian cancer. After about a month of recovery, I had a colonoscopy, just to make sure there was no sign of cancer in the GI tract. The next step was to meet with a medical oncologist, who worked in tandem with my GYN oncologist. I was given the option of doing the regular ovarian cancer chemo protocol of carboplatin and paclitaxel or trying FOLFOX, which is used to treat patients with gastrointestinal cancers. Because of the COVID-19 pandemic, it was difficult to get a second opinion. It was a tough decision to make, but I ended up going with carboplatin and paclitaxel.
I had a port-a-cath implanted in my collarbone area to help deliver the chemo. The first chemo session was very scary, as I had an allergic reaction to paclitaxel. For subsequent chemo sessions, this was managed with premedications, including prednisone and Benadryl, and I completed six sessions between May 2020 and August 2020.
I’d like to share with women undergoing treatment that I really benefited from taking Ativan for anxiety and depression during this time. I was fearful of doing so, but it really did help. With my doctor’s permission, I also went to an acupuncturist to help with my neuropathy, and it seemed to be effective. It’s been five years since my chemo, and I do not have any lasting side effects from the neuropathy.

A Survivor’s Perspective

There are differing opinions on how much should be removed during the initial surgery. I believe women should be aggressive in fighting the cancer and ask for as much of their female reproductive system to be removed as possible. I would also advocate for patients to seek treatment from a GYN oncologist. They are the specialists. And it is very important to find treating physicians who understand your philosophy for care.
If your GYN oncologist doesn’t have experience treating this rare form of ovarian cancer, I urge patients to try to get a second opinion. For my peace of mind, once the COVID-19 restrictions were lifted, I sought a second opinion from Dr. Amanda Fader at the Johns Hopkins Hospital. She confirmed that the choices I made were appropriate and there was nothing I could have done differently.

Navigating Survivorship

Five years later, I am doing very well. After chemo, I went back to work and resumed teaching fourth grade. I initially visited my oncologist every three months and then tapered down to every six months. I have CT scans every year. My iron levels haven’t recovered, and I still struggle with anxiety. But I try to live my life as normally as possible.
Oddly enough, I feel blessed that my tumor was so large. Otherwise, it might not have been detected in time. I encourage women to closely monitor their body and the signs it could be giving them that something is wrong. It’s important to be your own advocate and not let anyone make you feel as if you are overreacting to vague symptoms.
I hope that my story can give encouragement to someone who is newly diagnosed.