Cheyann’s Stage 4B Low-Grade Serous Carcinoma Ovarian Cancer Story

Cheyann Shaw became an inspiration for countless people, including ovarian cancer patients and caregivers, after sharing her story of a stage 4B ovarian cancer diagnosis.

In her story, Cheyann details undergoing surgery, chemotherapy, and targeted therapy. She also highlights the importance of patient self-advocacy, how cancer impacted her relationships, including her marriage, and how she approached the issue of fertility preservation.

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This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

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How did you get diagnosed?

Finally, I went to the ER again and said, “Listen, something is wrong,” so they did a transvaginal ultrasound. The lump had gotten bigger at this point. It started out about the size of a golf ball, and it was now the size of a baseball.

The ER doctor came back into the room about an hour or two later, and he was smiling from ear to ear. He was like, “You’re fine. It’s probably a non-cancerous tumor or a cyst.” He told me to just see my OB-GYN to be safe.

I knew there was no way this way nothing. I called my doctor that Monday, because I went to the ER on Saturday. I said, “I’m getting married in 30 days or so. If I need surgery, could we schedule that right away?”

She already had all the ER notes and said, ‘Let me call you back in a couple of hours and see what I can do.’

She called back within the hour and asked if I could be at the hospital at 5 o’clock tonight, and we’ll do a laparoscopy and go from there. My OB-GYN was always very quick any time I’ve had an issue, and this was no different.

She wasn’t sure if it was a cyst that needed to be ruptured surgically or a torn muscle. I was huge into fitness at this point, so that was pretty likely.

However, not even five minutes into the surgery, they saw cancer everywhere. She sewed me back up, and they rolled me in for a CT scan. I still had no idea what was going on.

I spent the night in the hospital that night, and the next morning is when I found out I had cancer. My doctor came into the room and told me. They weren’t 100% sure if it was ovarian cancer or if was cancer from somewhere else that had metastasized. 

The plan for starting chemotherapy

We started chemo right away. My first round was August 22nd because in that week I got my biopsy, they put in my port, too. Then we started chemo.

I was getting married on September 9th, and that was the day I was scheduled for my last infusion for that cycle, but they bumped it up a few days for me.

I had chemo on Tuesday and got married on Friday. I was told that after three weeks, you start to lose your hair, so I was very nervous that I was going to be bald on our wedding day. Thankfully, my hair did not fall out until the next day. The day after the wedding, I was brushing my hair and a clump came out, so I shaved it.

My family and I just didn’t feel comfortable with my doctor in Florida, so 11 days after we got married, I flew back to Seattle, where me, my husband, and all of our family are originally from.

I started getting treatment at University of Washington. I got there on the 20th, saw my new oncologist on the 21st, and started chemo again on the 22nd. It was all just so quick. 

What was the biopsy like? How long did the results take?

The biopsy was another surgery. They knocked me out thankfully, but it was really quick. Right where that lump was, they went in with a needle and grabbed some of the tumor tissue.

I think they said it was a 30- to 45-minute surgery. I woke up and had a tiny little patch where they had bandaged me up. I was sore for about a week. 

They got those results within a few days. I was supposed to be able to leave fairly soon after that, but my doctor’s fellow or colleague came in and said, “I know you’ve been here for a few days, and you’re ready to go home, but would you be okay staying a couple more hours and getting your port put in?”

I said yes, because otherwise I would’ve had to wait a week, and I was already there. 

How long did it take to put the port in?

They put the port in around 3:00 p.m., and we were home by around 8:30 p.m., so it was really quick. I was really sore for a week. I was black and blue all around the port.

I couldn’t work out for a week, so that sucked. In a snap of the finger, my life was getting flipped upside down. It was a lot to process.

Treatment Decisions

Why did you move across the country for treatment?

At the time, it was just my husband and I down here in Florida. His dad and stepmom are here now, but they weren’t yet. His brother and sister-in-law lived down here, but we were all young and in our 20s. We didn’t really have support down here, and my husband works full time.

He’s a real estate agent and is always on the go. I didn’t want to slow down his life because my life was getting slowed down. Even though we’re married, I didn’t want him to put all of his focus on me. We’re young. I wanted him to focus on work.

Not having support down here was a big thing, but the way my doctor made me feel uneasy was the main reason. She made me feel like a dollar sign. Also, I asked her about surgery. I said, “What about doing surgery right away? Wouldn’t that make it easier for the chemo to get anything that’s left?”

I’ll never forget it. She looked at me and said, “That would be a disservice to you.” When she said that, it just sent this chill down my spine, and I was just not comfortable.

After talking to all my family in Washington, we decided that it would be better for all of us to get me to Washington.

My husband couldn’t come for another four or five months because we had a lease we couldn’t break, and all his work was in Florida. I didn’t want him to just stop his life and restart his career. 

»MORE: How to be a self-advocate as a patient

What was your new treatment plan?

Her plan going forward was to keep me on Taxol and carboplatin for about a month to see how the cancer was responding. I was getting infusions every Friday with no weeks off.

Around the beginning of October, the tumor was the size of a cantaloupe. I looked pregnant on the right side. I had excruciating pain in my back, and I had to stay drugged up on painkillers because just one wouldn’t cut it, and I didn’t like that at all. 

My doctor then said, “This chemo is not working. We need to do surgery to get as much of this out as we possibly can.” She sat me down and asked me if I was superstitious at all.

I was like, “That’s a weird question, but no. Why?” She told me she had an opening for surgery on Halloween and asked if I would be okay with that. I said, “Uh, yeah! Get this crap out of me as soon as you can!”

I stopped chemo right away because the chemo could make me bleed out or make my body not heal properly from surgery, so I stopped for three weeks. Then, on Halloween, that’s when we did the major cancer debulking surgery. 

1st-Line Chemotherapy & Surgery

What were the side effects you experienced from chemo?

I was really lucky. I was super nervous about chemotherapy. On the first day of chemo, I sat in the waiting room and just cried because I was thinking about all the horror stories I’d heard. I had no idea what to expect.

For some reason, I thought I’d be in this chair that looked like a spaceship. Once I had my first round, I was like, “Oh. This isn’t too bad.

»MORE: Read other cancer patient experiences with chemotherapy

What were the chemotherapy side effects?

I have a few family members and family friends who have been through cancer and heard their stories, but I was very fortunate. I never once got sick from chemo, I never threw up from chemo, and I never felt nauseous.

The only side effects I experienced were hair loss and extreme weight loss. Before treatment, I weighed a healthy 130lbs. I had maybe 13% body fat. I was almost all muscle.

After my cancer debulking surgery, I dropped down to 97 pounds. I lost 15 of that during chemo. I had no appetite. I didn’t want to eat. When I did, I would usually have diarrhea. That’s about it, though. 

In Seattle at the time, marijuana is medical and recreational. My doctor prescribed me my medical card. She said it would help with my appetite. When I got down to 97 pounds, it was really hard to put on any weight. I started taking THC and CBD, and I think that’s what was making me able to eat.

When I would take the pills or smoke, I would eat the whole house. If I had dropped to 95 pounds, I would’ve had to get a feeding tube, so I was willing to try anything. I think that’s why my doctor pushed for it so hard. She didn’t want me to get the tube.

»MORE: CBD, Cancer & Treatment Side Effects

What was the preparation for the cancer debulking surgery?

My surgery was scheduled on Halloween. A few days before the surgery, I had to go get my blood drawn so they could determine my blood type.

With this surgery, there was a chance I’d need to get blood transfusions. There’s a slim chance of that, but they still want to have the blood in the room and ready just in case. They checked all my levels and made sure my body was ready for surgery.

The weekend before surgery, I had to do a full colon cleanse. That was not fun. Every hour, I had to take sips of this nasty substance. I was on a strict liquid diet for the first day.

The second day, I could only drink the cleanse until the afternoon, and then I could also have water. The third day was the same. That’s all I had to do for the surgery prep really.

When I got up to the hospital, they took me back to the operating room and hooked me up to my port, they checked my labs again, and that’s when everyone started coming in.

There was an anesthesiologist that came in to talk to me, my doctor came in, and I had about 20 family members in the waiting room. They all cycled through to say hi before surgery.

The last thing I remember before surgery was getting the cocktail to make me loopy, I could see the lights in the hallway going by, and then I was in the operating room, and they put the mask on me. 

How did you feel going into surgery?

Since I was 12, I’ve had around 10 surgeries because I’m an athlete. I wasn’t nervous about going under. I was more nervous about the outcome.

I didn’t know if they were going to be able to get it all or what would happen next. Yes, it was surgery and a big deal, but I was kind of a pro at it at this point.

I just wanted them to be able to save my life more than anything else. I was bubbly, happy, and ready to go.

To cope with things, I laugh and dance and tell jokes. I used my humor to cope with my nervousness.

How did the surgery go?

Apparently, what happened was when they got into the operating room and opened me up, the cancer was worse than they thought. On my CT scans, it looked like I just had one massive tumor, but I had five tumors. The big one was hiding the four others behind it. One was so far pushed into my back, they didn’t know if they were going to get that out without severe nerve damage.

The doctor had to call out to my husband in the waiting room because it was an emergency. I was bleeding out a lot. I had four blood transfusions. The big problem was that they were going to have to insert an ileostomy bag because the big tumor was connected to my colon and my small intestine. They weren’t sure if it was going to be permanent or not, but it had to be done.

She told my husband, ‘I’m not really asking your permission. I’m telling you what we’re doing.’

I had no idea that was a possibility.

I ended up having a full hysterectomy, I had part of my bladder removed, part of my colon and small intestine were removed, and I had some lymph nodes removed so they could test them. My spleen, appendix, and gallbladder came out. The five tumors were removed. The biggest one was actually the size of a beach ball.

My doctor said the tumor sat in my pelvis. The pelvis acts like a fish bowl, so the tumor just sat there and started spilling out over the top. She said my bladder was up under my ribcage.

I had organs all over the place. That’s why I had been so constipated. That tumor was pinching my intestines and colon.

You got your lymph nodes results back after surgery?

The third day after surgery is when I had to learn how to walk and sit in a chair again. I was sitting in this chair, and my doctor walked in. I knew something wasn’t right. She’s usually super bubbly, but this time, she walked in with a straight face and her head down a little.

She sat next to me and said, “We got your lymph nodes results back, and unfortunately you’re now stage 4. You have cancer in some of your lymph nodes, and we can’t surgically remove them. Thankfully, it’s not in your bloodstream.”

That’s when she told me basically that I was terminal. She didn’t say those words, but she said there might not be a chance of a cure. She did say that she would fight it with everything she could, though.

I looked at her. I was kind of shocked, but I asked her, ‘Do you believe in God?’ She said, ‘Well, I believe in science.’ I said, ‘That’s okay, but I believe in God, and I’m going to be okay. We’re going to beat this thing.’

She rubbed my back and said, ‘I love your optimism, but I need you to know the severity.’ I told her I knew there might be a chance I wouldn’t make it, but I was going to beat it anyway.

She left, and I was tired, so I laid back down. My husband had flown back to Florida. He came in town for my surgery, but he had to leave the next day. My mom was with me the whole time.

When I was sleeping, my doctor walked her down the hall and told her, “You should prepare yourself because we don’t know if she’ll be here after Christmas.” I never knew that until I was done with chemo. 

Did you have any complications in recovery?

After four or five days post-op in the ICU, I was moved up to the regular floor and being watched and monitored and all that. They gave me the go-ahead to go home, and I was off chemo for about three months just to give my body time to heal.

During those three months, I was admitted to the hospital for a week. I had a block in my stomach because of the ileostomy bag. Sometimes, if a block like that is severe enough, you have to get surgery.

Luckily, I didn’t have to, but it took about a week for it to work itself out. I couldn’t eat without it coming right back up, so I was on fluids constantly and peeing like a crazy person.

Once I was released, I didn’t have any issues until a few months after that, right before I was about to start chemo again. That’s when I was dealing with all the weight loss.

I was 97 pounds, and my doctor told me I had to get a feeding tube if I lost two more pounds. That’s when I started the medical marijuana, and I wasn’t able to put on much weight at all, but I wasn’t losing weight either. 

Did you get your ileostomy bag removed, or was it permanent?

My ileostomy bag was leaking stomach acid underneath the sticker that was supposed to keep it in place, and it was eating my skin. It was raw and it hurt, so my doctor scheduled a colon check to make sure I could get my ileostomy bag reversed.

That was some type of test. I will never forget that. I had to go to the X-ray machine, and they put a tube in my rear. They flushed a saline solution up there that would light up. I had to stay in all these awkward positions for twenty minutes while I was getting pictures taken.

There was a live feed that I was watching, and I could see the solution working its way through my insides. They did that to make sure that where they fused everything together was completely healed, because if not, they couldn’t reverse it.

If liquid went through it, that meant that poop would also be able to go through it, and I could die from being septic. We did the ileostomy bag reversal on March 20th..

What were the Doxil and Avastin side effects?

You can get hand and foot blisters, so for five days after the infusion, you can’t get too hot, you have to take lukewarm showers, and you can’t put your hands or feet in hot water. You have to wear loose-fitting clothes, and you don’t want to sweat. It can destroy your skin.

There was one time I was setting my elbow down on a leather couch, and my skin was just gone. My skin was really fragile. That was rough. I never got hand and foot blisters, but I did get blisters in my mouth, and specifically I had a blister the length of my tongue.

For a week, I couldn’t talk, and I could barely eat. The acid from citrus fruits would kill my mouth, so I couldn’t have anything like that. That was the worst side effect I had from that besides the weight loss.

It also made me tired, but not as tired as the Taxol or carboplatin. At chemo, I had to put ice bags on my hands and feet, so it was freezing. Not to mention that this was in winter in Seattle, where it’s already cold. 

Avastin was super simple. I had no side effects from that. The infusions lasted around 30 minutes. It’s actually a maintenance chemo, so it’s supposed to stop the growth and spread of any tumors and keep the tumors away.

Those days, I was there maybe two hours because I would meet with my doctor or her fellow, get my blood drawn, and then get chemo for 30 minutes. 

What this new regimen effective?

For every scan, they noticed that it wasn’t necessarily shrinking the lymph nodes. I only had cancer isolated to three or four lymph nodes at this point.

They weren’t shrinking, but they were stable. After month six of being on this regimen, I had a scan, and that’s when they saw some stuff appear on my liver. There were two or three black spots.

My doctor came in and had the same look she did when she told me I was terminal. My mom, dad ,and husband were all there. She said, “The lymph nodes are stable. Your CA 125 is doing really well. You do have some new spots on your liver, though, and we’re not sure if it’s cancer or if it metastasized, but we need to move quickly.” 

They hooked me up to my port and put the radioactive sugar in me. When you get it, you have to lay on the bed completely still for like 45 minutes.

I asked them to play some Christian music because it calms me down, and that was the most peaceful I had felt in a long time. I went through the machine a couple of times, and that was it. My doctor called me to set up the appointment to talk about the results a few days later.

What were the results of your PET scan?

During that appointment, my doctor sat my husband and I down and said, “Well, the good news is it’s not cancer on your liver. It hasn’t metastasized. It looks like it’s scarring and fatty tissue on the liver. We’ll monitor it. We know about it now, and we know it’s not cancer. We also know you don’t have any more cancer in your lymph nodes.”

We were shocked. She said, “Your lymph nodes did not light up whatsoever.” At this time, they had been stable, but they weren’t shrinking, so she said I was in a gray area.

The plan going forward was to take me off of Doxil and keep me on Avastin for pretty much the rest of my life, with getting scans every month for the first three months.

When did you find out you had no evidence of disease (NED)?

I got a call from my doctor on November 13th the next year. She said they had looked over everything. They looked over all my scans, CA125, and everything.

She said, ‘You have no evidence of disease. There is no cancer in your body.’

I was like, ‘What?! Woohoo!’ I was so excited that I hung up the phone, and we started jumping up and down and dancing.

We ended up going to dinner that night. It was a great day and great feeling. I remember seeing all my friends on social media celebrate their no evidence of disease.

One friend celebrated hers, and I was so happy for her, but I was also immensely jealous of her. I thought, “I’ve been fighting longer than her, and I was diagnosed before her, so how is this fair?” I was really upset, but I knew I was going to be there one day.

When my doctor told me, I looked back to me laying in my bed wondering when my time was going to come, and I was just so happy. It was super cool. I’ll never forget what I was doing, where I was, what I was wearing, or any of that when I got the call. It was just a great day. 

What’s your ongoing treatment look like now?

I’m no longer on chemo. I ended the Avastin on April 27, 2018, because I didn’t feel like I needed it.

I had six scans and CA 125s in a row that were all really good. The lymph nodes were actually starting to shrink back to normal size over time.

I asked if I could be done with chemo, and my doctor said, “You don’t have to be on Avastin if you don’t want to,” so I stopped that.

Now, I meet with my doctor here out in Tampa, where we moved. I meet with her every three months, and I get CT scans every six months.

Once I got home, I realized my head is extremely round and the mole wasn’t that noticeable. The way I coped with everything was I named my mole. I had done the same with my port and my tumor. It made me feel more comfortable and confident.

Over time, I actually enjoyed being bald. I never had to do my hair. Getting ready was super quick and easy. I just knew it was something I couldn’t control, and I needed to accept it and learn to love myself in a new way.

Even when I was first diagnosed, there was no way I was going to sit there and feel sorry for myself. I told myself, ‘I’m gonna get up. I’m gonna fight this thing. I’m not going to lose.’ I always said I would win.

Looking at things in a positive way really helped me, so that’s what I did with my bald head. I would say, ‘Yeah, this sucks, but at least I don’t have to wash my hair. At least I don’t have to blow dry it. At least I can get ready in five minutes.’ I always tried to put a positive spin on it.

»MORE: Dealing with hair loss during cancer treatment

What was the lowest point you experienced?

That would be November, about a month after my cancer debulking surgery. I was 97 pounds, no hair, and I had an ileostomy bag.

I took a picture of me standing to the side. I had nothing. I sent it to my husband alongside a picture of me at my fittest. I said, “I can’t believe I lost everything I’ve worked for.”

I remember not recognizing myself in the mirror. That same night after beating myself down, that’s when I realized it wasn’t healthy for me to rip myself apart because I had no control over the situation. What I did have control over was how I thought of myself and my situation.

My weakest point was also when I found my strength.

Can you explain your experience with self-advocacy?

When I was first diagnosed and even prior to being diagnosed, I had to push for myself.

Each time I went to the ER, I would fight. Come to find out, I did have images on my CT scan that showed I had cancer, but because of my age, it was so rare.

When I was in Florida, I really had to push for myself. That’s the main reason I went to Washington. We just didn’t feel comfortable with my first oncologist.

Her treatment plan didn’t make sense to me. I even thought surgery first made more sense, and I said so, and that’s when she told me that would be a disservice to me. That was it for me.

When I got to Washington, I never had to advocate for myself. My doctor would sit down with me and answer questions and tell me the truth. She told me everything I needed to know and more. 

Do you have advice for anyone who’s nervous about standing up for themselves?

Just stand up for yourself. I don’t like confrontation, but at the end of the day, you’re the only one who knows 100% when something is off in your body. Doctors can go to all the school they want to, but they don’t know how you’re feeling. You have to tell them if something is up.

If you’re nervous to push, you can always send your concerns in an email or leave a message at the desk for them. Always get second, third, and fourth opinions. You know your body better than anyone else.

If any symptom lasts longer than two weeks, you need to go get checked. Do not be afraid to get checked. It literally could save your life. That could be the difference between you being here or not.

»MORE: How to be a self-advocate as a patient

Was there a talk about fertility?

Before I was diagnosed, my husband and I were planning on starting a family right after we got married. Unfortunately, with ovarian cancer, I couldn’t. Before I had my huge debulking surgery, I expressed to my doctor that we wanted to have kids. I asked what the chances were.

She said she could see how bad the cancer was when she got in there and maybe try to save an ovary, but there was a high chance of it spreading if we did that. I told her I just wanted to get rid of the cancer and both ovaries, but then asked if we could save eggs before we do the surgery.

We scheduled with a fertility specialist, and she said the chances of me being able to save eggs were very slim, but they would try. During the cancer debulking surgery, my doctor retrieved some eggs and gave them to her, but both ovaries were saturated with cancer, and all the eggs were covered.

I can’t have kids. It’s still a very hard subject, but now I can at least talk about it. It took me about two years to grieve the process. My counselor told me it was important that I grieve because it’s like I lost kids in a sense.

We can’t have kids in the way that a lot of people can. We looked into adoption, but with that, you have to be five years cancer-free. I totally get that, but it still sucks. We want to do an egg donor and surrogate first. We’re in the process of looking for an egg bank very soon. We’ll eventually have kids — just not the normal way. 

In the beginning, the surrogacy thing kind of bothered me because I thought, “Well, is this child even going to be mine?” After speaking with some people about it, I felt so much better. They said, “When you see that baby, you feel like that child is absolutely yours.” 

I get super emotional when it comes to this because as a woman, my job is to help create a life. That was just ripped from me. I had to come to terms with it, though, because it’s not something I can change. 

Talking to other people about their experiences really helped. My biggest advice is to seek help. Talk to somebody. When I started going to a counselor, I started feeling so much better.

You need to talk about it. I lost the ability to have a child, so I needed to grieve. For a long time, I felt like it was my fault, and I know it’s not now.

»MORE: Fertility preservation and cancer treatment

Just be there for each other. Be honest with each other. Realize that your life is going to change, and you have to be open to the changes and find your new normal.

That’s exactly what we had to do. We had to find a new daily routine. There were times I couldn’t leave the house, and that was our life, so we went with it until it wasn’t anymore.

You have to go with the flow and not stress too much when things aren’t going the way you want them to.

How was the financial aspect of treatment?

Before we got married, I had insurance through my dad. He’s a government worker. My mom works with insurance, so she was able to get it to where I still had my dad’s coverage even after we were married.

My husband and I also had insurance. When I got to Washington, my dad’s insurance dropped and we just had ours. It covered pretty decent bills, but being a young couple, those bills come in pretty quickly. 

I was very fortunate to have a really big support system on social media and through family and friends. What we did was create [a] “#CheyStrong” shirt. That was my slogan. We sold the shirts for $20.

We raised a lot of money. It helped with paying the bills and getting us to and from chemo. We had a lot of support. 

How important was it for you to have outside help?

When I moved to Washington, I moved in with my mom and her husband. Her job was super cool and let her work from home so she could take care of me. For about five months, I lived with my mom.

After my husband moved, we stayed about three more weeks, and then we moved into our own apartment. My dad would take me to chemo when he didn’t have to work. He’s a corrections officer, so his hours were really crazy. We had so much family support. 

It was extremely important for me to have that. That was really why I moved to Seattle. My husband and I had no idea how to deal with something like an ileostomy bag. My mom works with insurance but also with assisted living, so she knew her way around some of that stuff a lot better than we did.

It was important for me, but it was even more important for my husband to know that I was taken care of because he couldn’t be there for the first several months.

There’s a lot of darkness in this world. Why look for it? Why not look for the good things in life? When you look for the light, your world becomes so much brighter.

I don’t let the bumps in the road get me down. I’m just living every day, as well as dealing with post-cancer stuff like the stomach issues and not being able to have kids. 

What advice do you have for someone who has just been diagnosed?

Your life may be flipped upside down, but you have a choice in all of this. You can either choose to look at this as a negative and let it destroy your life, or you can look at this from a different perspective and say, “This sucks, but I can do this. I’m not going to lay down. If I get knocked down, I’m going to get up every time.”

Swing harder, punch harder, and don’t give up. Find the good in this horrible situation. Cancer is crappy. It’s horrible. It’s negative. Why focus on that? Choose to find something positive and bring joy to your life.

At the end of the day, it’s a cancer diagnosis, but it doesn’t take up enough space that it takes away who you are as a person.

Cancer did not take away Cheyann Shaw. I was not going to let it do that. You have a choice. In a world of not having choices, this is one you do have. It’s up to you.

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Ovarian Cancer, Low Grade Serous Stories