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.

• Name: Cheyann S.
• Diagnosis:
  • Ovarian cancer
  • Low-grade serous carcinoma
• Staging: 4B
• 1st Symptoms:
  • Stomach pain
  • Constipation
  • Small lump above pubic area on right side
• Treatment:
  • Surgery
    • Laparoscopic exploratory surgery & biopsy
    • Cancer debulking surgery
    • Ileostomy bag reversal
  • Chemotherapy & Targeted Therapy
    • Carboplatin & Taxol: Once a week for 3 weeks, off on week 4
    • Doxil & Avastin: Doxil once a month. Avastin once every two weeks

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.

  Cheyann Shaw

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

Diagnosis

What were your first symptoms?

My first symptoms actually started a year before I was diagnosed. I was in and out of the ER about six times with horrible constipation that would lead to stomach cramping.

I would just throw up constantly, I was peeing every 20 minutes, and my husband and I actually thought I was pregnant for a while because every month, my period was missing or irregular.

Finally, in July, a bump appeared on my right side. It was the size of a golf ball on my stomach. I was lying down and noticed it. A few weeks later, it was still there. We had given it until then because we thought it might be a cyst or something since I hadn’t had my period.

A few more weeks later, I started getting shooting pains where that lump was, and it was so bad that I couldn’t walk. It would last for five or six seconds, and then it would go away. From October to July, I was in and out of the hospital with constipation, throwing up, feeling like my appendix burst at one point.

They kept telling me I was just constipated. They did CT scans, but they didn’t see anything, and they weren’t really pushing for more tests because I was 22 or 23 during that time.

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. 

What were the next steps after diagnosis?

The day after that, I met with my oncologist. That’s when everything just started going super quickly. I had a biopsy a few days later because I actually wound up back in the hospital. I was throwing up constantly and couldn’t even keep liquids down, so we called my new oncologist. She said to get me up to the ER so they could get fluids in me.

That was kind of a blessing because I stayed in the hospital for about a week because of that, and they did the biopsy during that time. The biopsy wasn’t supposed to happen until a few weeks later, but it got bumped up, so that’s how we found out it was ovarian cancer.

There is no test to determine if something is ovarian cancer. A Pap smear doesn’t detect it, and it’s not like there’s a mammogram for your ovaries. To know 100% that it’s ovarian cancer, you have to get a biopsy.

Once that came back, my oncologist had a plan, and that was to do chemo every Friday for three weeks, take a week off, and do that for three months.

After those three months, the plan was to do a CT and a PET scan to see if the cancer had shrunk at all. If it hadn’t, then we would continue chemo.

»MORE: Read different experiences of a cancer diagnosis and treatment

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 first meeting with the new oncologist like?

I met my new doctor, and we sat down for an hour and a half. That’s something I didn’t do with my oncologist in Florida. I instantly felt so much better and more comfortable with her.

She didn’t see me as a dollar sign, a number, or even really a patient. She almost saw me like her own child. I was the youngest patient on the floor for the whole time I was there.

We sat down, and she told me her entire game plan. In that first meeting, she told me more about the cancer than I had heard the entire month I was in Florida.

We found out I was misdiagnosed. I was told I had stage 3, high-grade ovarian cancer when I was in Florida. It’s the more common, easier-to-treat type.

When I was in that meeting, we found out that I actually had low-grade. That’s the more rare type, and it’s completely resistant to chemo.

That was a punch in the gut. I didn’t understand how that was possible because I’m only 23 years old at the time.

She told me if I had come to her first, she would’ve done surgery right away. I told her what the doctor in Florida told me, and she goes, “No. Doing surgery would help with the chemo. It’ll help us centralize the treatment.” 

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. 

How did you deal with the loss of appetite and weight loss?

I ate pretty much whatever I craved. I did not change my diet for the first five months after being diagnosed until my doctor told me I needed to cool it on the sugar.

I was craving sugar. I was drinking Mountain Dew like crazy, and I hadn’t drunk that in forever. I was eating so many Reese’s Peanut Butter Cups.

My doctor finally said I needed to reel that in. She said the foods I was eating could really deter my treatment or make the cancer grow.

I ended up going vegan for the duration of my treatment, and I’m plant-based now.

I ate a ton of tofu and sweets that didn’t have a ton of sugar and didn’t have dairy. Vegan macaroni and cheese was my jam for a while. Veganism is huge in Seattle, so I would get vegan donuts from a donut shop called Mighty-O.

Every day after treatment, we’d go get donuts. I ate a lot of fish before I went full vegan. One food that never sounded good that I used to love was lasagna. It just never sounded good. It would make my stomach churn to think about it. 

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 woke up in the ICU. What do you remember?

I remember seeing about 20 different white coats. At University of Washington, they have students because they’re a teaching hospital. I was still pretty high from the anesthesia, but I heard bits and pieces.

I heard something about the ileostomy bag, so I looked down, and I was like, “What is that?” They said, “Well, that’s how you’re going to use the bathroom.”

It looked like a brain because my small intestine was on the outside of my skin. That’s how I would go to the bathroom, so I’d literally just be pooping in a bag. The intestine would move. It was kind of fascinating to watch, but it was really shocking.

My doctor said, ‘We got all the cancer we could physically see.’

I threw my arms up in the air, and I kept saying, ‘Woohoo!’

She also said they sent a few lymph nodes off to be tested. I was in the ICU for four or five days. I have a 13-inch scar because they literally had to split me wide open to get everything. They almost had to bring the scar right in between my boobs because that’s how big the tumor was.

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..

2nd-Line Chemotherapy & No Evidence of Disease (NED)

What was the 2nd chemotherapy regimen?

I started a whole new regimen because the Taxol and carboplatin was not working. My doctor said, “We’re going to give you the most intense chemo we can think of.” Its nickname is “The Red Devil” because it’s actually red. It looks like Gatorade. It can change your pee.

Doxil and Avastin were gonna be my new drugs. Doxil was once a month, and Avastin was every week. I did Doxil and Avastin for about six months. 

This regimen was really intense. There was a whole new ruleset with Doxil. I would get that once a month. The first week of the month, I would get both drugs, so we would be there for seven hours at the hospital from start to finish.

It was a long chemo day, but then the week after that, it would just be Avastin for three weeks. When the new month started, I would get both again. 

They don’t call Doxil ‘The Red Devil’ for nothing.

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.” 

I instantly started crying. I was finally putting on a little bit of weight, and I had been doing so well. I felt like myself other than not being the weight I need to be.

I didn’t understand. Two months before this, everything had been fine. I just didn’t understand.

She gave my family and I a few minutes to process, and when she came back in, she scheduled a PET scan. She said, “You’ll get basically a radioactive sugar injected into you, and if there’s cancer in your body, it’ll light up.” 

How was the PET scan?

Three days later or so, I had the PET scan. I was so nervous. We lived about 45 minutes from Seattle, and the car rides were usually fun.

We would listen to music and talk. This time, it was just silent and somber. I was preparing myself for the worst.

When we got there, I felt some peace. I told myself I was going to be okay. 

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 13