Ovarian Cancer Grad- Vicki
“Had I never had ovarian cancer, I would never would have gone through genetic testing and found out that I had the ATM gene, I would never have known my chances of developing breast cancer and gotten a preventative double mastectomy. It’s almost like it was a domino effect. ”
Name: Vicki Campano
Age at Enrollment: 37
Major: Ovarian Cancer, GCT Stage 3A
Previvor (positive for ATM gene)
What were the primary symptoms you experienced prior to diagnosis?
None.
What symptom(s) lead you to go to the doctor?
None, really. My husband and I were trying to get pregnant. I’d had a miscarriage and a few other issues over the course of 5 years. I was seeing an OB and she mentioned going to a fertility specialist. My husband and I both kept denying that was where we needed to go. During all of this, I had a dermoid cyst on my right ovary that had been found a couple years prior. The gynecologist would check it every year to make sure it was fine, and had never recommended taking it out. We ended up going to a fertility specialist and he measured it. It turns out from January to July it had changed a little bit. He wanted to take the dermoid out. He ended up being the doctor who found the cancer. It turns out that there was a small tumor behind the dermoid cyst. When he removed it and sent it to the clinic to confirm what it was.
Inititally I was told that I was going to have to have my ovary taken out, I’d heal and we could continue with fertility treatment. In the end I went in to have my ovary removed and they did the debulking and they found traces of ovarian cancer on the lining of my stomach on the opposite side. At some point the tumor had leaked. Had they taken the dermoid out years before when we first found it, it might not have gotten to that stage and been confined.
I quickly did IVF to try and save my eggs, but unortunately that didn’t work. I went from being told I needed no treatment and just taking out my ovary, to a debulking surgery and needing chemotherapy.
Courses Completed: Debulking urgery, chemotherapy, hyperbaric chamber
I’m also a previvor and had a preventative mastectomy and removal of my left ovary two years after my ovarian cancer diagnosis and treatment (Positive for ATM gene)
What has been your hardest moment(s) since your diagnosis? How have you moved forward through them?
Overall the hardest has been accepting that Dan and I will not have children of our own. I found out I had cancer because I was trying to be a Mom. We had spent a few years thinking any day I would finally get pregnant and then having a miscarriage. It takes a toll on you knowing you cannot give your husband a child. Dan and I have used therapy as a way to work through a lot of our feelings for a couple of years. We learned to communicate better, and to share what we wanted. We make decisions together and work through those tough decisions.
Accepting that we can't have children on our own did not only impact me, but it also impacted Dan. Knowing that my diagnosis not only impacted me, but also to Dan has truly been difficult, but we have weathered the storm together!
What do you believe are the unmet needs of young adult patients within the community?
Awareness (through our stories). If there is an opportunity for me to share my story or talk with someone, I always do. The biggest thing is to share our stories. Anyone who follows me on Facebook or Instagram knows that I’ll share because knowledge is power- if someone has a family member going through it, they can see me as another resource. Also, we definitely need a cure, but there are so many kinds of cancer that there won’t be one cure. I’m always willing to share my story and will keep putting it out there.
What advice would you give to someone who is newly diagnosed? What advice would you tell them to ignore? What advice would you give to the caregivers?
You need to find someone you’re comfortable with. The gynecological oncologist that I started with- the one who did the surgical procedures and got me through everything- I actually did not proceed with her. She was very direct, didn’t accept voicemail- she just wasn’t the right it for me. She was the person my fertility doctor recommended. It was who he knew. She is very good at her job and a lot of people really love her and she is well known and respected, but she was just not right for me.
My girlfriend who had breast cancer was there after the gyn-onc called to tell me that I was going to have to go through chemo. I was only 2 days out of my debulking surgery. The gyn-onc was like, “I just want to let you know that the cancer actually spread to the left side of your stomach, we took out your right ovary, we did the debulking, there are a couple of different spots, it’s positive for cancer but they are microscopic, however you’re still going to have to do chemo. My assistant is busy right now so why don’t you call back in an hour or two and set up an appointment for next week. “
I hung up with her and was like, “What the hell just happened?”. My girlfriend was like, “You need to call them back and tell them that you want an appointment NOW.” I called the assistant and she was like, “She doesn’t have any availability right now.” I said, “You need to tell her she needs to make room because I’m on my way over right now. I’m coming. I need more information.”
In the end, I researched some other oncologists in the area. I found someone else who I felt I needed at that time. I found someone who listened to me, where I feel like my first doctor wasn’t listening to me. You need to advocate for yourself, you need to ask questions and get another opinion if you aren’t comfortable with your doctor.
When you feel overwhelmed or anxious, what do you do for relief?
I like to walk, read, and take pictures!
Do you have any new daily/weekly routines since your diagnosis? If so, what are they?
I want to say yes, but honestly I haven't stuck with many of the routines that I should. I take lots of vitamins now!
What did you know about the type of cancer that you were diagnosed with prior to your diagnosis?
Not much, but had I never had ovarian cancer, I would never would have gone through genetic testing and found out that I had the ATM gene, I would never have known my chances of developing breast cancer and gotten a preventative double mastectomy. It’s almost like it was a domino effect.
What do you now want people to be aware of?
Awareness. In particular for ovarian cancer because it is so often diagnosed so late. For me, I was stage 3, but I should have been diagnosed sooner. I was diagnosed with IBS, I was diagnosed with other things that were probably NOT those things and was probably my ovarian cancer trying to be known. Ovarian cancer often disguises itself.
If there is an opportunity for me to share my story or talk with someone, I always do. The biggest thing is to share our stories.
How did/do you find joy during this experience?
I try to take in moments and enjoy them - whether that is seeing a friend, a cookout, party, time with my nieces or my family. Before cancer I was a planner, and wanted to know details of whatever the "plan" may be - an outing, dinner, etc. I try to just go with the flow now and enjoy the event - not putting pressure on when it should end, or when we should head home, etc.
What has your cancer experience taught you?
I’ll be honest, my husband and I recently made the decision that we’re probably not going to adopt. We had moved back to Cleveland (from Denver) to be closer to our neices and adopt. Then my brother got sick (with non-hodgkins lymphoma). I had come to Cleveland with the mindset of “we’re going back to Cleveland, we’re going to get our life settled, we’re going to adopt.” And then for a year I was going back to Denver every 3 weeks to see my brother and something changed. This changes you so much- from who you are, your perspective on life. Now I’m 42 and by the time we could potentially adopt- I don’t want to be the older mom now. I have my life to live and my nieces to embrace and we’re going to make the most of it all.
If you could write anything you wanted on a billboard in NYC’s Times Square that would reach millions of cancer patients, what would it read?
"Be Your Own Advocate. Listen to your Body and Fight for Yourself"
