What do you know about ovarian cancer?
If you are a woman in your 20s, 30s, or early 40s probably not a lot. Maybe you’ve heard it’s something that postmenopausal women can get.
True, but as Morgan Gaynor has learned just because its more common in people who are older does not mean millennials are immune. It can happen to us too.
At 30 years old, not long after regular checkups with her internist and gynecologist who told her she was the “vision of health,” she was diagnosed with Stage IV Ovarian Cancer. A type called low-grade serous ovarian cancer that is more common in young women. High grade is more often found in postmenopausal women.
“Ovarian cancer is not as common for young women. I believe the statistic is that about one in 1000 women will get a diagnosis like mine, a stage IV. That sounds rare, and it is rare, compared to breast cancer,” Gaynor said. “But if you think about 1000 women, you probably went to college with a lot more than that. So, it’s likely that you’re going to know somebody who has this.”
Today, she is living a pretty normal life. Her hair is growing back nicely, and after her doctors adjusted her hormone-blocking medication that keeps her cancer free, she is back down 20 pounds with little daily interference. Plus, she is working full time as a marketing professional in finance, and working out.
But it’s been a long road back to get here. As an ovarian cancer survivor, she tells us about her unsuspecting path to diagnosis, the misconception millennials and others have about ovarian cancer, and the powerful lessons she’s learned about navigating the healthcare system as millennial and as a woman, along the way.
YMyHealth: What did you know about women’s health leading up to the time you went to pursue fertility preservation?
Morgan Gaynor: I started seeing a gynecologist religious each year starting around 15 or 16 years old. I had the HPV vaccine when it was first introduced in 2006 or 2007. In college, I started having irregular pap smears, so I went twice a year for about five or six years. I’ve never been somebody to skip on those.
My aunt (not blood related) had Stage IV Breast cancer in her early 30s when I was in middle school. So, I’ve always been very aware of breast health and had that on my mind, including the importance of like self-exams.
YMyHealth: What made you decide to pursue fertility preservation? Why did you decide 30 was the age to do that?
Morgan Gaynor: It was actually something my mom and I had spoken about starting when I was 20 or 21, which is very young. We talked about it being something that was worth considering. I was not in a relationship for most of my 20s, but I did have a few friends who were also in their 20s who were having trouble with fertility. One ended up doing IVF at 28 or 29. And then I had two or three other friends who struggled to conceive.
At 30, I was single and didn’t really have any prospects. I thought if I’m going to spend all this money, because it’s not inexpensive, I’d rather have a 30-year-old egg, than a 35- or 36-year-old egg. Although, it’s perfectly fine to pursue fertility preservation at that age. This is just what was right for me.
YMyHealth: How did you first learn that shockingly you had ovarian cancer?
Morgan Gaynor: I had an appointment with my gynecologist and my general practitioner on the same day to have a conversation about pursuing fertility preservation. They examined me and said, “You are the vision of health; You should go forward with fertility preservation.”
I made my initial appointment with the fertility specialist during my lunch break, and went on my own because I really didn’t think it was going to be a big deal. I’d had friends who had done this, so they had told me what to expect. The doctor asks questions and then she does a transvaginal ultrasound to see what your ovaries, uterus, and other parts of your reproductive system look like to see if they are healthy. At that point, I had never had an ultrasound,
I told her about my gynecologic story and she said, everything sounded great, and I went for the ultrasound. Almost immediately, she was like, “Have you ever been told you have polycystic ovarian syndrome?” And I said, “No.” “Have you ever been told you have endometriosis?” And I’m like, “No.” And she’s saying, “Okay, I’m seeing… and she starts saying to the tech in the room sizes of possible cysts. The first one, I think she said was like 42 millimeters, 46 millimeters… She just started saying all these numbers. I’m lying there wondering how big is a millimeter, right?
She seemed concerned and asked me to come back a week later to see if maybe where I was at in my cycle was affecting them. And if they were bigger, I was going for an MRI. I actually already had one scheduled because I’d been in a ski accident.
A week later the cysts were all bigger. Now, she was saying numbers like in the 50-millimeter range. So, I had the MRI I think on a Thursday night and then Friday around lunchtime, my phone rang. It was the fertility specialist telling me to make an appointment at Memorial Sloan Kettering, which is, you know, the major cancer center in our area and that their ovarian cancer surgeon, like head of the department was expecting my call. At the time, I’m sitting at my desk at work and she goes, I did just say, you might have cancer.
YMyHealth: At that time, what if anything, did you know about ovarian cancer?
Morgan Gaynor: Nothing really. Like other young women, most of my conversations with my gynecologist have been about not getting pregnant or about my menstrual cycle (having heavy, intense periods). My doctor never talked to me about my fertility until I made the decision to pursue fertility preservation, and I went to him to have a conversation about it.
I knew ovarian cancer was a thing, but I didn’t really think about it. Cervical cancer was much more on my radar because of my irregular pap smears—testing positive for irregular cells. I had a couple of procedures to remove those precancerous cells and haven’t had any abnormal paps since 2014.
YMyHealth: So, what did you do after she called you? And what happened when you went to see the ovarian cancer specialist at Memorial Sloan Kettering?
Morgan Gaynor: I drove over to my mom’s office to tell her, and we made the consultation appointment. What was interesting was when I got to Sloan Kettering, the surgeon, looked at my MRI and didn’t think it made any sense. She wasn’t concerned and said it probably isn’t anything like we’re not talking about surgery. I’ll see you in two weeks after my people review it.
When I came back two weeks later, she’s said, “You definitely have something going on and we need a CAT scan to see how far it has spread.” So that calm was gone. I had the CAT scan the next day and the morning after, I flew to my friend’s baby shower in South Carolina, which the doctor said was fine. My surgery for about three weeks from then.
But when I landed, I had voicemails from the doctor, saying you need to call me. Apparently, my CAT scan was so bad that they wanted me to have surgery the next day. My parents intercepted the calls and asked that they hold off on telling me about the new surgery date until I got home. So, I ended up spending the weekend at my friend’s baby shower with no idea that it was that bad.
YMyHealth: Were you experiencing any signs or symptoms of ovarian cancer before this or anything that was out of the norm for you?
Morgan Gaynor: At this point, I was very bloated. I think it had started a little before the initial ultrasound. But I just thought I had gained weight. It was hard to pinpoint that it was bloating versus gaining weight. So not anything different beyond that.
I had been going to the gym, religiously working out all the time before my ski accident. Once I stopped working out as much, I thought weight gain would have made sense. But I actually remember while all of this is going on I sent a selfie to my friend joking, “Oh, surprise, I’m six months pregnant because my stomach seemed so big.” I was trying to pick out a dress for a wedding at the time. In hindsight, I’m like, “Oh my God, my stomach was filled with cancer.” I had no idea.
YMyHealth: Tell us about your surgery, what the recovery was like, and your treatment.
Morgan Gaynor: I was diagnosed as having stage IV ovarian cancer, specifically low-grade serous ovarian cancer. So, for my surgery, they made an incision that went all the way from right above my pubic bone to right below my sternum. It was like a nine-hour surgery, and it took me six months to recover. (You can see the list of all Morgan had to have surgically removed here.)
About six weeks later, I started chemotherapy, which was six cycles of one day of chemo every three weeks. So, October 2019 to February 2020—finishing one month before the COVID-19 pandemic started.
My chemo was about six hours a day and intense. So lucky me with ovarian cancer. Our treatments are generally much more intense than breast cancer patients, but the same drugs. Admittedly, one doctor even said I was getting enough medication for two people, when I asked if we could lower it because of how bad my side effects were. Typically, low grade doesn’t respond to chemo, but that’s the standard of care right now.
I got a sheet of 30 different potential side effects. And you don’t know until you do it. I basically went to the pharmacy and stocked up on over the counters that would work for any of them, and would just like rotate through my arsenal of what I needed. After losing my hair, I had acne, dry skin, diarrhea, bone pain and intense hot flashes.
YMyHealth: What do you have to do on a regular basis so that you stay cancer free?
Morgan Gaynor: I have to take a hormone blocking pill every day since completing chemo. Since my cancer was a hormone-dependent cancer, the treatment is similar to that for breast cancer which is also often hormone dependent. For all of these cancers that means they need hormones to grow, so prevents the hormones from attaching to the cancer and allowing it to grow.
I started with a medication that’s the most frequently prescribed, letrozole, but the side effects weren’t sustainable for me. I was waking up with really intense joint pain with my hands in fists and just walking around the house was uncomfortable. So, I tried another drug, which has a steroid to help with the pain, but I gained 40 pounds.
Now, I’m on anastrozole and this works really well for me. My side effects are minimal. Maybe you know a hot flash right after I take it and that’s it. So, I’m happy with this one.
What’s crazy is a lot of the women that I know, who have had ovarian cancer, don’t know that there are other choices of drugs to take.
YMyHealth: What is one of the lessons you have learned from your experience?
Morgan Gaynor: I feel like the theme of what I’ve learned through my treatment is that you should talk to your doctor and not rush your appointments. Take the time to tell them what you’re experiencing and what’s going on with your body. Don’t feel like you just need to check the box of normal. That’s what they’re there for. And if you don’t tell them what’s going on, they can’t offer you solutions. Sometimes there aren’t other options, but maybe there are. You won’t know if you don’t ask.
YMyHealth: You found out you had ovarian cancer only because you decided to pursue fertility preservation, which is where as part of the process every woman has to get a baseline transvaginal ultrasound. Were you able to preserve any of your fertility which was your initial goal?
Morgan Gaynor: Unfortunately, it was too late for me because my ovaries were completely taken over with cancer. But I’m alive today because I went to that appointment to do fertility preservation and had an ultrasound.
YMyHealth: What’s a misconception that you think the general public and the healthcare community have about ovarian cancer?
Morgan Gaynor: Ovarian cancer is not just for older women. It can hit anybody at any age. Just because it’s not likely, doesn’t mean it’s not what’s happening. Leading up to my ultrasound and diagnosis, I think my mom probably talked to 30 different doctors, and they all said there’s no way I could have ovarian cancer. “She is so young. There is no such thing as bilateral ovarian cancer, it’s most likely cysts.” Unfortunately, that wasn’t the case for me.
One in seventy-eight women will develop ovarian cancer in their lifetime. So, it’s happening. The survival rates on average are less than half for five years while the average five-year survival rate for breast cancer is about 93%. We desperately need funding for research on ovarian cancer.
Women are getting married older and having children older. Just because we didn’t have to discuss fertility or things like that at a younger age in the past, I think it’s important that we do that now. Not every woman is trying to have a baby in their mid to late 20s and that’s when they are getting their first ultrasounds.
Right now, there is no regular screening test for ovarian cancer and you can’t always pick it up in the blood. My white blood cell levels were fine, yet, I had cancer that had spread to other parts of my body.
So, I feel that we should all have an ultrasound at 20 or 25 to establish a baseline. It’s not a reliable screening tool for ovarian cancer specifically and people can end up getting cysts removed unnecessarily, but if you are doing ultrasounds with more regularity then you would know if a woman is prone to cysts.
YMyHealth: As an ovarian cancer survivor, what do you think millennials should know about their gynecologic health? What are some things they should pay attention to and be proactive about?
Morgan Gaynor: Be aware of your body and if you have changes lasting two or more weeks that’s when you want to talk to your doctor. For ovarian cancer, bloating, changes in your bowel, frequency of urination, feeling full quickly, weight gain or loss that you can’t fully explain. They are very vague and easily dismissed symptoms, but if anything, I think we all just need to become more aware of how our bodies function, so that we can be aware of when things are different.
I also think we need to get more comfortable talking about our menstruation because doing so will make it easier to identify when things aren’t right.
I remember having conversations about my period being “regular.” I feel regular means it occurs every so many days which is different for everyone, but “normal” is another thing. Talk to your doctor about what your normal is because maybe that’s not normal. I thought my periods were normal and they weren’t. I wonder if talking about these things sooner, things could have been different, and I don’t know that.
To learn more about Morgan’s Ovarian Cancer awareness work and about ovarian cancer, visit her website: morganbeatscancer.com