September is Ovarian Cancer Awareness Month. We are dedicating our Fridays for the month of September to profiling fellow Ovarian Cancer Grads and Students.
Meet Ovarian Cancer Grad, Samantha Lockwood!
Name: Samantha Lockwood
Age Enrolled: 30 in 2005 and then again at age 34 in 2008.
Major: The first time it was ovarian cancer stage 2c. The second time it was an unknown stage... It was contained in my remaining ovary and not in my lymph nodes, and it was a different cell type. Doctors didn't really think of it as a recurrence because of the new cell type though some believe it could have been and the disease just morphed. It is very rare to have the same person present with two different types of ovarian cancer within four years. I suspect that is because most women have a full hysterectomy. At the end of the day it didn't matter if it was stage 1 or 3, they knew I responded well to the carboplatinum/taxol the first time, so we knew that the next steps would be more chemo.
Primary symptoms you experienced: I kept having weird stomach aches, sort of bloated. For the year prior to diagnosis it was very intermittent and I didn't notice anything at the time. A few times I threw up- I never throw up, so that should have been a sign. Sex was painful, not vaginally but near where my ovaries are, especially if my stomach was full. That isn't recognized as a common symptom but as soon as it started happening again three years after I was disease free, I knew something was wrong. I asked my doctor to do another CA125 test and an ultra sound. Those tests came back clear and they ordered another ultrasound in 3 months. I called 2 weeks later when symptoms persisted and asked for another CA125 test. I'll never forget sitting in my office the next day and getting the phone call that my CA125 had more than doubled. They had me scheduled for a CT scan the next day and a follow up with the doctor the following day. I dropped the phone. Unfortunately I had a lunch meeting with my father in law who was waiting for me in the lobby. I remember not wanting to tell him because I didn't want alarm him when I didn't know exactly what I was dealing with. But I told him anyway. We decided not to talk about it and spent the rest of that lunch talking about his work. I remember not being able to pay attention and honestly I don't think he was paying attention either. He was the first person I told that day. After the CT Scan, the doctor explained that it was either cancer or endometriosis. Regardless, he was recommending I have a full hysterectomy and I was devastated. It felt like an amputation and made giving birth out of the picture. Of course, the crazy me was convinced I'd lose my "women's intuition"--- that was silly and it didn't happen.
What symptom(s) lead you to go to the doctor?: The first time I just got lucky. I went for my annual pelvic exam and he felt a mass. That doctor was convinced it couldn't be cancer and I believed him. He said "ovarian cancer is impossible at your age" and gave me the option to have surgery now or later. I decided to have it immediately because it was winter and I wanted to be good to go in the summer. I enjoy outside activities like rock climbing and cycling. A rock climbing friend of mine who is also a doctor looked at me and convinced me to go see a gyn-oncologist. His rationale was since I was so young and wanted to preserve my ovaries I should go see someone who does this type of surgery in much more complicated situations twice a week, vs someone at a county hospital whose primary job is to deliver babies and only removes ovarian cysts a handful of times per year. It was the best advice I could have gotten because the truth is that seeing a gyn-oncologist for that initial surgery increases survival rates by 20%. Plus, the oncologist knew exactly what to do when he saw that the ovarian "cyst" he was removing really looked a lot like cancer, so I didn't have to have a second surgery to remove lymph nodes, etc.
Courses completed: 2 surgeries, 12 chemo treatments, countless Nuelasta & Nupregyn shots. Those hurt. 3 hospital stays (2 for surgeries, and one more for bowl obstruction).
What you’d like other women (and men) to know about Ovarian Cancer:
There are symptoms. It isn't a death sentence. Many women, even when diagnosed late stage are living longer and longer with the disease, many for decades. There are so many ovarian cancer organizations around the country today that provide tremendous resources. This wasn't the case in 2005 when I was diagnosed. We've come a long way which is great because there is more research and awareness out there for ovarian cancer. Stand Up to Cancer has a dedicated ovarian cancer dream team. OvarianCancer.org is a tremendous resource for information and advocacy.
Any helpful tips or tricks for other women navigating a diagnosis? Know your body. Be your own advocate. If you know something is wrong tell someone. If you are throwing up during treatment or get fevers, call your doctor. There are so many anti nausea meds that work well, one will work for you. Remember your doctors work for you, ask as many as possible. There are many ways they can do things. For instance, I started to get tingling in my fingers. I love to rock climb and knit and make pottery. Getting irreversible neuropathy was an unacceptable to me. My doctors decided to switch my treatment from Taxol to Taxitere. I was having intense bone pain with the Nuelasta shots and I couldn't understand why the shots only came in one dosage size and I was getting the same amount at 100lbs as someone who was 200lbs. We switched to an older drug called Nueprogen that is self administered, daily. That was better for me and caused less pain. Make sure your doctors and nurses work with you. Use the resources available to you. American Cancer Society has resources in many towns across the country who can drive you to treatments if you are in the need. They also have financial grants. OCNA is a great place if you want to become more involved in advocacy on a national level. Many hospitals have social workers and nutritionists available.
I also strongly recommend learning how to ask your friends and family for what you need. I was very bad at this and expected my husband to read my mind. That doesn't always work. It is also important to understand that well intended people often say really, really stupid things when they don't know what to say. Many, many people don't know what to say to friends with cancer.
Finally the most important advice I have for anyone going through treatment is to enjoy the good days. Don't forget to live and love with all your might. I'm not saying to stay positive. I *HATE* when people tell someone with cancer to stay positive. Cry, be angry, whatever... just don't let it consume you because that isn't a fun way to live... and you are fighting to live.