Susan’s Stage 4 High-Grade Serous Carcinoma Metastatic Ovarian Cancer Story

Susan shares her stage 4, metastatic ovarian caner story, diagnosed at 55 years old after feeling fatigue and unusual sensations. She shares how she got through chemotherapy, surgery, and recovery from both.

Explore her story below, where Susan highlights how she navigated life with metastatic ovarian cancer, including the hair loss from chemo, what support helped her the most, and how cancer affected her marriage.

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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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Diagnosis

What were the first symptoms?

I was feeling some unusual sensations. One day, I woke up feeling extremely cold. It was a feeling that came from the inside out.

It wasn’t the kind of cold where you could get warm with blankets or extra clothes. It was just a weird kind of bone-chilling cold feeling, and when I took my temperature, it was below normal.

I had an unusual feeling of pressure and discomfort on my right side. I felt it because the tumor was right up against my liver, and they say the liver is very sensitive. Otherwise, I might not have felt it at all.

At one point, I had a really bad cough, so they thought maybe I had just bruised a rib or something. They did a chest scan and thought they’d see something, but that was normal. I did blood tests, and all of those were normal. 

What got you to go to the doctor’s?

The night before I went to the doctor, the discomfort had gotten uncomfortable enough to wake me up. When I went in for the CT scan, the doctor was expecting it to be kidney stones or something.

I really don’t think he was expecting it to be what they found. 

CT scan results

I had the CT scan, went back to work that afternoon, and by the time I was on my way home from work, he called.

He said, ‘They see a mass. It doesn’t look good. We need to biopsy it. I just want to prepare you that it looks like it could be something serious.’

Describe the tumor biopsy

A few days later, I had the biopsy. It was pretty involved. I went into the hospital. I was under anesthesia. I think I was completely out. They went into my liver area. 

That came back as malignant. Because it was so close to the liver, they were nervous. It was an unusual presentation.

How did you process the diagnosis?

I remember when the doctor called. I had turned on the radio in my room. For some reason, it was on a Christian rock station.

I never listen to that station, and as I was listening, I realized this song was about God. I am religious, but I don’t listen to Christian rock. I just felt like that was a little message of hope or faith.

I was sort of prepared for the diagnosis because they hadn’t been giving me false hope. He told me it was malignant and very serious. I guess I kind of went into shock.

»MORE: Processing a cancer diagnosis

First meeting with the oncologist

They referred me to an oncologist, who was wonderful. He deals only in this specific kind of cancer. He wanted to do an MRI and see it for himself. I had that scan, and he called me after he got the results.

He said, ‘We’re going to be able to do this. We may have to get a liver specialist involved just in case, but we’re going to be able to treat this.’

What was his treatment plan

That was a reassuring call. Then we met in person. What he wanted to do was start chemo, shrink it first, then go in and take out the mass surgically. We’d go for some more chemo after that to make sure we got it all. 

I did five weeks of chemo, went on a family trip to San Diego, and had my surgery. By the time of the surgery, it had shrunk significantly. I responded instantly to chemo, so that was great news.

Chemo side effects and solutions

Summary: fatigue, metallic taste, mouth sores (mucositis), constipation, nausea, chemo brain

I would be pretty tired, especially on days I had infusions. I was on steroids, though, so it would almost be hard to sleep because I had energy from that. 

I had a metallic taste in my mouth sometimes. It made food taste bad. That was hard. I used plastic utensils instead of silverware because the nurses suggested it. That helped a bit.

I also had some special toothpaste to rub on my gums to prevent mouth sores. I took stuff to prevent constipation as well.

I lost some weight while I was in the hospital after the surgery, so I think that was just about being in the hospital and not from chemo. 

Sometimes I felt nauseous, but I didn’t throw up much. I had this weird, tingly feeling in my chest sometimes. It would go away, though. One day in chemo, I had this tingly feeling in my spine. One of the other women in the infusion center overheard me and told me to tell a nurse. 

I wasn’t going to say anything, but I did. She came over and told me she had to give me something to stop that or else I would have a bad backache. They told me to be sure I told them anything I was feeling during infusions because they would come over and adjust things. 

I tended to be a little more forgetful when going through chemo, and I possibly am sometimes more forgetful now because of it, too. I think I experienced some chemo brain.

»MORE: Cancer patients share their treatment side effects

Surgery

Preparing for surgery

Prior to surgery, I had to give myself shots to prevent blood clotting and infection. I had to meet with the liver surgeon. That was a little traumatic. I went by myself because I didn’t think it was going to be a big deal. 

He scared me so much because he said, “I have to be sure I’m ready for this surgery. I need to see all the scans. This is very serious.” I was so scared. I walked out of there with tears in my eyes. 

Surgery recovery

The hospital stay was great. It was a smaller hospital. They were all so nice. I was in a lot of pain when I woke up, though.

The first time I walked was only a few steps to my door and back to bed, and it was so painful. I gradually worked my way up to walking around the halls. 

They moved me out of ICU after a few days. I was in the hospital for almost a week. I would get up and get myself to the bathroom and all that. I put on my makeup every day. I still had quite a bit of hair left at this point. 

Recovering at home

The recovery at home was pretty good. I was able to do the steps at our two-story house, so that was a good sign. I laid on the couch and watched TV a lot. I asked for ice cream a lot. It was great as far as food went. I ate whatever I wanted. 

I have a day job, I’m a part-time actress, I have grandkids, and I have a lot of friends. I’m hardly ever just sitting around.

I don’t have any lasting effects from surgery, but I do notice that if I’m just relaxing, I might get tired a little earlier than normal. 

Reflections

Can you talk about hair loss?

I had about a month to recover after surgery. I did the same regimen for another 12 weeks. I went until the end of September. During that time is when I started really losing my hair. 

I went for a wig early on. I found one that was very similar to my normal hairstyle.

I also went to Mayo Clinic and got a free wig. It was a little lighter and longer than my normal hair. That was fun. 

I started wearing the wig in July or August because it started to look bad. They say it’s better to shave it sometimes. Seeing it thin and fall out was traumatic.

I was shedding like crazy. By September, it was time to shave it. Nobody was really talking about it, but one friend offered to do it for me. He did.

That made it a fun thing. He shaved it into a mohawk first and fun stuff like that. It was neat.

I would go out without the wig if I was feeling gutsy. The first thing I would do when I came home was take the wig off because it was hot and itchy, so if I felt like I didn’t need to wear it, I wouldn’t. 

Getting support

Lots of people offered to come over. One of my friends would come over and walk with me. The gifts were constant.

People were so kind and made us meals, sent cards, books, gift certificates, and all that kind of stuff. 

People probably thought we were obnoxious, but whatever. That was the greatest gift she gave me.

She made chemo fun and something to look forward to — like a little lunch date each week. 

My sister-in-law came out and stayed with me after surgery. She was like my nurse. She stayed about 10 days. That was awesome. She cooked and just took care of me. 

They’d pick me up and take me to lunch during my recovery from surgery. And they even paid me for some extra hours when I had to cut back a little bit. That was all wonderful.

Plus, a bunch of people came out to support me on my last day of chemo. My friend who shaved my head brought cupcakes for the whole room. It was my niece, my daughter, some friends, and even Dr. Janicek. My husband came for lunch after. 

How cancer affected your relationship with your spouse

I’ve known my husband, Jimmie, since I was 18. We got married when I was 21. We’ve been through a lot of life together. He’s very wonderful. He was just always positive throughout the whole thing.

I don’t think he ever had a doubt that it was going to be okay. He really believed it and made me believe it, too. He just went with the flow. He’s a laid-back person. He just did what he had to do. 

Message to other cancer patients

You have to feel confident in your doctor. If you’re not 100%, maybe get a second opinion.

I loved my doctor. He didn’t talk like a doctor. He gave me a big hug.

He talked like a real person. He made me feel more hopeful and optimistic. That, plus his amazing credentials, gave me a lot of comfort. You have to have confidence in your doctor and trust them. 

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Ovarian Cancer Stories, High-Grade Serous