The Sandy Rollman Ovarian Cancer Foundation recently chatted with survivor Vivian Seiler to learn about her experience with the disease and how she used the foundation’s programs to keep her going through the tough times.
Because the holidays are all about giving back, we wanted this month’s spotlight to highlight how Sandy Rollman gives back to survivors and families alike. Read our November “Survivor Spotlight” below to learn how Vivian fought through her diagnosis with the help of other survivors, mentors and more.
SROCF: Can you tell us a little bit about yourself?
Vivian: I grew up in central Pennsylvania and my husband and I started to raise our family there. We moved to Phoenixville about 19 years ago, for my husband’s job, and then I also got a job in the area. Our kids were active in sports, and I was always running them around, in addition to working full-time. I was also fairly physically fit and active.
SROCF: Can you tell us when you were first diagnosed with ovarian cancer? Did you have any symptoms that lead you to get checked out?
Vivian: I was diagnosed in April of 2016, and the diagnosis came quickly. I know some women struggle for years to get a diagnosis. In February of 2016, I felt abnormally tired. I had an extreme amount of stress at work at the time, as well as in my personal life, so I just thought my tiredness was due to the stress. In mid-March, I had lower back pain and had one really heavy period that I had to go to a gynecologist where he performed a D & C. He sent me home, and told me I was anemic and that was causing my exhaustion.
I waited another week, I was not getting any better, and now I noticed my abdomen was starting to distend. I went to a different gynecologist, and he did a transvaginal ultrasound on me and said it looked like I had an ovarian cyst that burst. He said I had fluid in my abdomen but that my body would absorb it over time.
Over the next week, I was having trouble eating as my abdomen was distending even more. So I waited just one more week and I said to my husband, we’re going to the ER because I felt like I couldn’t get anyone to listen to me and really check to see what was wrong. Once I got to the ER, they ran blood tests, did another transvaginal ultrasound and then a CT scan and that confirmed it. I think people overlooked me because I was a healthy 52-year-old, and I had no cancer in my family at all, of any kind. So it was out of the blue.
SROCF: What were the next steps after your diagnosis? Did you have surgery right away?
Vivian: When I was in the ER, the ER doctor came to us and said, he was getting a gynecologist oncologist to come see me. I remember thinking oncologist? That’s cancer, they can’t know what they’re talking about. So when the gyn/onc came to see us, he told us they suspected ovarian cancer, but they wouldn’t completely confirm that until they operated. I kind of blanked out when he said it, I’ll be honest, because he was saying terms I’d never heard such as ascites and CA125. I felt like I was having an out of body experience.
They wanted to send me home for a day and then have me come back in two days for surgery. I persisted because I literally couldn’t eat at that point, and it felt like I was getting weaker by the minute. They found a bed, and I convinced them to admit me that night so at least I could get IV fluids.
I had the debulking surgery a day later where he did a full hysterectomy, removed my omentum and also removed as much cancer from my small bowel as he could. At that point, I was diagnosed with stage 3C clear-cell ovarian cancer. It’s a more rare type of ovarian cancer, and it’s pretty aggressive.
SROCF: Were they able to predict how long you had it? Like you said, you had just started to experience the symptoms a few months before you had surgery, but at that point it was already stage three.
Vivian: Right, exactly. I do know clear-cell is very aggressive, and I think it is fairly fast growing. I’ll be honest, sometimes that question pops into my head, and I keep thinking I should have asked the doctor, but I never did. Some women have symptoms for almost a year, and I really didn’t. I was tired in February, but that was my only symptom. March is really when I started to not feel well. I pushed the doctors hard, and within three weeks I had a diagnosis.
SROCF: So, as of right now, how are you doing?
Vivian: Right now, I am in a state of what they call NED; no evidence of disease. My scans show no evidence of disease, and I’ve been in that state for about two years. I was getting scanned every three months, but I am now having allergic reactions to the dye they inject into me for the scans. I’m trying to have my scans farther apart, but it makes me nervous to not be scanned as often knowing it can come back so fast. The mental side of cancer is as hard as the physical side. It’s like a dark cloud following you around every single day.
SROCF: Can you share your experience with the Sandy Rollman Survive and Thrive group?
Vivian: When I was first diagnosed, I really didn’t know anyone with ovarian cancer, and honestly, I really had never heard of it. At the time, I thought the pap smear would detect ovarian cancer, which it doesn’t. So when I was diagnosed, my husband and I didn’t know any group to even reach out to.
Through a friend I found out about the Sandy Rollman Ovarian Cancer Foundation. I looked at their website a little bit, and I heard they do great things, but I didn’t really dig into it too much. Then Sandy Rollman started their first Survive and Thrive group. I was in the very first group that was started, and it gave me a sense of belonging.
SROCF: How did Survive and Thrive help you through your treatment process? What did you gain from the meetings?
Vivian: I think there were probably eight to ten of us that would come to the meetings, and it was like we all understood each other even though we were all at different points of our treatment. You didn’t have to worry about how you looked, because a lot of us didn’t have hair. You didn’t have to worry about what you were experiencing because one of us probably experienced it. We all understood each other.
It was just a really neat sisterhood, and I think it just gave us all a sense of belonging. There was no judgment, and it was a place to ask any questions. There was no question that you would feel weird asking because we all had been there. So it’s just a great group, and I still continue my meetings two years later. I keep attending the group because I just find it so helpful and uplifting. I no longer feel alone and know in an instant, I can text one of the ladies if I have a question or just need to be picked up!
SROCF: How long did you participate in the Survive and Thrive group meetings? Was there a certain time frame or a set schedule?
Vivian: The first group was a six month program and we would have one meeting a month. We still try to meet monthly. We get an email from Sandy Rollman in advance with the meeting topics. The topics can range from alternative therapies, such as acupuncture, massage, meditation, laughter yoga to doctors coming in to discuss the latest treatments.
SROCF: Looking back at your experience with Survive and Thrive, do you think it helped you through your diagnosis and gave you something you wouldn’t have found on your own?
Vivian: Yes absolutely! Survive and Thrive definitely helped me! It’s so uplifting to be around fellow OC survivors. Ovarian cancer is a very lonely disease because there’s not a lot of people that understand it. The other sad news is that the survival rate isn’t very good due to the diagnosis usually being in the later stages. So, it’s wonderful to be around other survivors and to support each other. It really helps with the mental side of this disease and staying positive.
SROCF: After your diagnoses with ovarian cancer and going through all those ups and downs with your own family and coping through it, how has that changed you as a person? Do you have a different outlook on life? Can you talk to me about how you feel today?
Vivian: I’ll never be the same physically or mentally. That, in itself, has been hard for me to accept sometimes. On a positive note, on the mental side of how I handle life, I feel like I’m in a much better place. I am much more aware of every minute of every day. Whereas before, I was always busy and just flew through the day with work and running the kids and let stress get to me. Now, I appreciate every minute of every day and try to not let things get to me. I’m also very grateful for doctors, researchers, nurses and Robin, the co-founder of Sandy Rollman.
So my gratefulness has gone up, and I try to be there with my loved ones more than ever. I think at times I used to say no to fun things because I had work or I had X, and now I’m like, yep, I’ll be there. The physical side for me has been harder to accept. It’s hard for me not to be able to push my body like I used to be able to. I no longer take anything for granted.
SROCF: What advice would you give to women who are recently diagnosed with ovarian cancer and don’t necessarily know where to turn to ask these questions or where to get help?
Vivian: Actually, Robin will sometimes send me names of women if they’re newly diagnosed, especially if they’re clear-cell. So, I mentor newly diagnosed women. I’m also involved in the Survivors Teaching Students program, and we go to local hospitals and share our stories with medical students. That’s been very rewarding for me as well.
With newly diagnosed women, they’re usually either just starting chemo or in the throes of it, and one of the things I learned the most through my treatment is to stay positive. I always tell them, ask me any questions and don’t be embarrassed about anything. Just stay as strong as you can and ask women questions who have gone through it.
The best advice I can give to women is to have a positive mindset, be your own advocate (question the doctors, they are on your team), be active and ignore the statistics.