Suzann’s Stage 3C Ovarian Cancer & BRCA1+ Story

Suzann shares her stage 3C ovarian cancer story, testing positive for the BRCA1 gene, and getting diagnosed after not being able to urinate.

In her story, Suzann shares undergoing surgery and chemotherapy, and she highlights how she navigated life with cancer, including losing her hair, how the diagnosis impacted her relationships, and what support was most important for her through the experience. Thank you for sharing your story, Suzann!

---

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?

I couldn’t pee. I’ve been ER nursing for years, and my husband passed away from cancer almost two years ago. I decided I wanted to slow down and stop nursing in the ER.

About a year ago, I was at work, and I couldn’t pee. It happened three or four times, and I had to be catheterized.

How did you get the diagnosis?

My uro-gyno told me I had nursing bladder, and I said that’s not true. I went to the gynecologist, and he did an exam.

He called me back a week later and said I had cancer.

I had what I thought was a stomach virus, and I went to the ER. I had a CT, and they said I had a cyst on my ovary. My gyno pulled it up and told me it was cancer. 

Whenever he did my Pap smear, the cancer was so far advanced that it showed up on the Pap. Ovarian cancer rarely shows up like that. 

My kids handled it better than I thought. They were in fight mode like me. They just wanted to know what was next.

»MORE: Breaking the news of a diagnosis to loved ones

Treatment

What was your first surgery like?

I had surgery before and after chemo. The first one was supposed to be a total hysterectomy. I had what they thought was a large hernia, and they were gonna try to remove that.

The hernia ended up being nothing but cancer. They removed that. The cancer was all in my omentum, my bladder, my intestines. It was everywhere. My ovaries had ruptured. 

She tried to do a hysterectomy, but she couldn’t. She would’ve had to do a colostomy or urostomy or both. I did not want that. If we could take our chances, shrink it with chemo, and then try another surgery, that’s what I wanted to do. So that’s what we did. 

Recovery was hard.

I had an incision from above my belly button all the way down. I was in pain when I woke up from surgery. My first surgery was June 17th, and I started chemo on June 27th.

»MORE: Read more patient experiences with surgery

How was the second surgery?

We had a scan after several chemo treatments, and they saw it was all shrinking down. She thought she could get it without having to do the ostomy.

She was able to do that surgery on September 23, 2019. She removed all the cancer she could see and gave me a hysterectomy.

I’m just now healing from that surgery. In fact, there’s still a pinpoint opening. My incision took forever to heal, and they said that was because of all the chemo. 

You did genetic testing?

Now I’m having to alternate CTs and mammograms of my breasts because of the gene factor. The genetic testing was easy. It was just drawing blood. So far, I’m the only one in my family who has tested positive for the BRCA1 gene. 

They want me to have a double mastectomy, but I’m just not in for that right now. I’ve been through too much. It’s too soon. I don’t want another incision. I’d rather just do close surveillance on it.

»MORE: Read our interview with a genetic counselor

Where do you stand now?

I’ve had two scans since that surgery, and they’ve both been clean. I’m in remission now. I was told on the Monday before Christmas that I was in remission. I’m on oral chemo now. I take it twice a day. 

Before insurance, it’s about $24,000 a refill, and I get it refilled two or three times a month. They’re not joking when they say chemo is expensive. Thank God for insurance and discount cards.

It makes me really tired. I was having bad nausea, but that’s subsided for the most part. It makes my bones hurt. I guess it’s like arthritis. It hurts. I feel like an old person. It just hurts a lot.

I’ve been taking Motrin and Tylenol for it, but it doesn’t help much. I sure don’t want to get off of it, though, because it’s doing such a good job keeping me in remission. 

What is your doctor follow-up schedule?

I see my doctor once a month and have blood work. I have CT scans every 3 months.

Reflections

How has the whole experience changed your outlook on life?

I don’t take things for granted anymore. I thank God every time I roll out of bed and can stand up. I say, “Thank you, Jesus, for another day.”

When you’re going into surgery, you think about everything. When you go in for chemo, you think about the possibility of it not working. 

I’ve always been compassionate with my patients, but I’m 100 times more compassionate now. It’s different when you know how they feel.

When I washed my hair, it started coming out in handfuls. I remember thinking, “Please don’t all come out at one time while we are here at the lake.” I was devastated. I was scared to be bald. I was scared for anyone to see me bald, especially Kelvin.  

I had a lot of dark brown curly hair that was very thick, and I prayed that I would not lose all of my hair. I never totally lost all of it, but it came very close. I had a very large bald area on the back of my head. The hair on top of my head got so thin that you could see more scalp than hair. 

I had to stop chemo three weeks before surgery, and during that three weeks the hair began to grow back in the bald spot on the back of my head. I actually went to get my head shaved, and she looked at me and said, “Why are you shaving it?” 

»MORE: Dealing with hair loss during cancer treatment

I told her that I had a huge bald spot on the back of my head, and I could not bear to look at it. She started smiling and said, ‘You don’t have a bald spot. It’s covered in fine hair.’ She just cut the little bit of long hair I still had really short.

I no longer looked like a scary corpse that had been in a coffin for 200 years. Kelvin and my family told me they didn’t care if I lost every strand of hair and that it was only hair and didn’t matter.  

I even lost my eyebrows and eyelashes. Now that my hair is growing back, it’s a different color and texture. It has a lot of gray in it. My eyebrows are even gray, but at least I have hair.

This past year has really been a trying time for us due to my diagnosis with ovarian cancer, and he himself had a heart attack in November and had to have two stents placed. He then had another cardiac event in late January and was hospitalized for 5 days.  

We have been there for each other and have been each other’s rock. I like to think we have passed the ‘test.’ I do love him very much.

Can you talk about your support system?

I have such a good support system with my family and friends. I had people coming in and giving me everything I needed. My support system, my friends, my coworkers and bosses — they’re all amazing. 

I started seeing somebody a month before I was diagnosed. I thought he wasn’t gonna want to stick around. Well, we live together now. He stuck it out. 

»MORE:  What kind of support cancer patients say helped the most

What’s your advice for people who want to help but don’t know how?

If you know someone who has cancer and they say they want a cupcake, then try your best to give them a cupcake or whatever it is they may want, because most of the time, it’s a simple solution. I craved ice cream the whole time I was in active chemo infusion. 

One of the biggest ways to support a cancer patient is to just be there and listen to them. No matter if it’s crying, fussing, or singing. It’s the simple things that mean so much. The daughter of a friend of mine knitted me a beanie hat, and it meant so very much. 

One thing you take for granted is being able to clean your house, so just taking out the trash or sweeping the floor is very much appreciated. 

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

Keep a positive attitude. You must not let yourself think negative. I have said since the day I was diagnosed that I was not going to let this crap kill me.

You must make up your mind that you are going to beat this dreadful disease. You need to start thinking, “How are we going to get rid of this cancer?” Then, “What can I do to keep the cancer in remission?” 

Keep telling yourself it’s not going to kill you and that you’re going to beat it and you will be a survivor.

---

---

Ovarian Cancer, High Grade Serous Stories