Alisa’s Stage 3C Low-Grade Serous Carcinoma Ovarian Cancer Story

Alisa shares her stage 3C low-grade serous ovarian cancer story and undergoing surgery, chemotherapy, and hormone therapy.

She also highlights how she navigated life after the cancer diagnosis, from losing her hair to chemo, the impact of the cancer on her long-term relationship, and how she dealt with the issue of fertility preservation. Thanks for sharing your story, Alisa!

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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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Getting Diagnosed

What were your first symptoms?

I went to the doctor in October of 2018 because I was getting some pain in my rectum. I wasn’t sure if I had a hemorrhoid or what. It was this weird, aching pain.

It was obviously very embarrassing.

I dealt with it for about a week or so, and finally my boss recommended her doctor to me. My boss and I are close friends, so I trusted her recommendation.

How was the doctor’s appointment?

I went to the doctor, and she said she didn’t see anything. She gave me a topical ointment. As far as I knew, the ointment was working. We thought it was an anal fissure, which you can get from a range of digestion issues or constipation.

She still wasn’t certain because she didn’t see anything and the ointment was working as far as I knew, so I just never revisited it. 

In March, I went in for my annual gynecological exam, and she said my uterus was enlarged. I had no symptoms at this point. She asked how I was feeling, and I said I felt fine. She ordered a transvaginal ultrasound and told me not to worry because it was probably fibroids. 

The ultrasound showed that I had a baseball-sized mass in my ovary. I had no idea. They said it was probably growing for up to a year before. As far as I knew, I didn’t have any symptoms.

Looking back now, I think the pain I had in my rectum was a symptom because we found out later that cancerous cells had spread to that area and my colon. They were in the left ovary, the right, my uterus, bladder surface, and even in parts of my rectum and colon. 

Otherwise, my other symptoms were bloating, acid reflux, and night sweats, but I never pieced it all together. I would’ve never guessed it was ovarian cancer.

Discussion of fertility preservation before surgery

We were going to remove the left ovary and fallopian tube. He asked if I wanted to freeze eggs. I said, “If I have one ovary left, I believe if it’s meant to be, I’ll get pregnant.” So I opted not to freeze my eggs.

The day of the surgery, [as] I was signing the paper, I noticed it said there was a possibility for a hysterectomy. I asked him what the chances were, and he said maybe 2%. He seemed confident that if it was cancerous, it was contained to the left ovary.

»MORE: Fertility preservation and cancer treatment

Waking up to news of cancer

They told me the second I woke up that it was cancerous. I woke up from the anesthesia, and they told me. I lay on the operating table and cried. I came out to see my family after surgery, and I was visibly upset. They were like, “So you remember what they told you?”

Everyone assumed I would forget, but no matter how many drugs were working their way through my body, I wasn’t going to forget something like that.

Of course I remembered I had cancer.

They told me again the next morning, and I was like, “I remember.” They told me it was cancerous and they needed to go in again because it had spread to my other ovary and uterus.

During surgery, my poor mom and boyfriend had to make the decision for them to either close me up and give me the opportunity to freeze my eggs or for them to just go ahead and take it all out. 

They decided to give me the choice, so I had to decide if I wanted to go through with fertility, and I decided against it. At least I had that option. I’m so glad I was given a choice.

Even though I ended up not choosing to go through with it anyway, it was nice to know I was able to make that decision. 

Also, I had a liver biopsy two days before my surgery because there was a mass that showed up on the MRI. I got the results that showed it wasn’t anything cancerous the day after the first surgery. It was such a relief because I knew at that point I wasn’t stage 4. 

»MORE: Processing a cancer diagnosis

How did you react to the diagnosis?

The first thing that came to mind was my fertility. My entire life, I had a really weird hunch or intuition — I don’t know what you want to call it — that I wouldn’t be able to have my own kids.

There have been several points in my life where I told my mom and my boss, who’s been my best friend for years. 

I just always had a feeling I wouldn’t be able to get pregnant. The first thing I said was, “I told you.” She was like, “You did. I have no way of explaining how you called that.”

I almost wonder if I manifested it. How did I know that at 10 years old? I’m a very logical, scientific person, so it was odd. 

I mainly thought about my poor boyfriend and hoped he was okay. Thankfully, he told me whatever I wanted to do about kids was fine by him.

More Surgery Treatment

Describe the second surgery

The first thing I did when I woke up was feel my abdomen to see if I had a colostomy bag. I was relieved to find out I didn’t. That was the first question I asked. 

For both surgeries, I had horrible reactions to the anesthesia. I was super overheated, nauseous, and dry heaving for hours. I didn’t have much pain in my abdomen, but dry heaving is the last thing you want when you’ve had a surgery. 

I learned from my experience with the first surgery. The oral anti-nausea meds didn’t work for me because I’d just throw them up. The second time around, I asked for the shot, and that helped.

The goal out of surgery was to get comfortable. The first surgery recovery was more of a mental and emotional process, but the second time around, I was like, “Let me heal and get me out of here.” 

I was in the hospital for four nights. Basically, they kept me until I farted. You have people checking in on you every once in a while. As soon as you do pass gas, it’s amazing how quickly the rest of your body recovers, too. It kicks things in gear, I guess. 

How was recovery from that surgery?

Then I recovered at home for about a month, and then I started chemotherapy. The recovery at home really wasn’t bad in my opinion.

Given that I had a big incision and 50 staples, I could’ve been in a lot more pain. I did have a little infection on my incision from my pant line, but that was about it.

It took about two to four weeks for me to start feeling better. After about six weeks, they say you can be sexually active again.

»MORE: Read more patient experiences with surgery

Chemotherapy

Describe getting the port before chemotherapy

The port placement was very painful for me. Everybody recommended getting one, but I don’t know if it made much of a difference. If you have strong enough veins and you’re young, I don’t know how much of a difference it made. 

I was awake for the surgery, but everything was numb. They give you a local anesthetic and IV drugs. I didn’t feel anything until later that day. 

During surgery, they put a little tent over your head so you can’t see anything. If you’re claustrophobic at all, it’s not fun, but it doesn’t take long. It’s a really routine procedure. 

Do you have any tips for chemo infusions?

I started chemo two days after my port placement. I asked the nurses if they had any tips for making it less painful to plug in for my first chemo session.

They said they would get me a prescription for Lidocaine. I could put numbing cream on my port every time, and it dropped the pain significantly. 

I highly recommend people talk to their nurses and doctors and ask for tips because they know so much and are so helpful. Don’t be shy.

Did you experience side effects from chemo?

The first day or two after chemo, I would feel fantastic because I was on oral steroids the day before, of, and after infusions. I would always try to do something active the day after infusions, like a hike or something. The doctors recommended being active because it would help flush everything through your body. 

»MORE: Cancer patients share their treatment side effects

Are you considered NED (no evidence of disease)?

When I left chemo, the doctor said because 90% of the cancer was taken care of in surgery and I finished chemo, he was confident I could walk out of there thinking of myself as cancer-free.

They haven’t said “no evidence of disease,” but they’ve said it in roundabout ways several times. The scan we did came back amazing, too. 

As long as I’m on this hormone therapy, I just don’t see the chances of it coming back. Letrozole blocks estrogen, and my type of cancer is extremely responsive to estrogen. So now I don’t produce estrogen.

It’s a bummer because I’m in menopause and can’t have hormone therapy, but there’s hopefully only a few years left of the menopausal stuff.

Reflections

Can you talk about hair loss?

My hair is growing back thicker and faster. I definitely still wear wigs the majority of the time. Soon enough, it’ll come off, though. My eyelashes are growing back with a vengeance. 

It started falling out pretty quickly. They say about two or three weeks after your first treatment, and they are not kidding. It started 14 days on the nose after my first infusion. With each day, it was falling out more and more.

I surrendered pretty quickly. I washed my hair twice, and it was so emotional for it to be clumping and falling out. I was too scared to touch my head. I would slide my T-shirt over my head, and all these hairs came out. 

I accumulated a trash can full of hair essentially in one day, and I told my boyfriend, “Okay, honey. I’m ready for you to shave it off.” 

I had cut my hair into a short bob when I found out I was going to lose it. I don’t think it matters what length it is when it starts falling out. It’s still scary. 

My boyfriend shaved it for me. I appreciated him doing that. He helped push that along and helped me not feel sorry for myself. I didn’t want to look in the mirror when he was shaving it. I just wanted to see it when it was completely done. I was crying during the process a little, but when I saw myself bald, I just started laughing. 

We looked at it together, and we were like, ‘It’s not that bad.’ I kept touching my head. It wasn’t as bad as I thought it would be. I was amazed by our reactions. He looked almost relieved. We both still thought I was cute. We were good. That wasn’t as terrifying as I thought it would be.

Losing my eyelashes was a bigger bummer. One eye lost them first. It looked a little off, but they fell off towards the end, and they’re the first to come back. Nothing was really painful for me. I didn’t have a tender head. It itched here and there, but it wasn’t bad.

»MORE: Dealing with hair loss during cancer treatment

How has the whole experience shifted your perspective?

I always imagined myself as a family person. At the end of the day, I didn’t really care what job I had as long as I had my family and friends.

Infertility has changed things for me. I have to set other things up to look forward to. Kids could be in my future still as far as adoption, but it’s not as much of a sure thing. 

I’ve shifted my focus on traveling more. I’ve become a lot more selfish since all this has happened. I only have one life to live, so I’ve shifted my priorities.

Now, as far as kids, we don’t have a biological clock holding us back, so we can focus on being happy for us.

I’m a lot less tolerant of people complaining. I don’t engage anymore. Now, I just give some generic Hallmark response to get them to stop complaining. I’m a lot less tolerant of negativity.

I’m a lot more focused on my goals, traveling, and doing things for fun. I’ve had a hard time with self-discipline with everything. It’s super hard to get back to a workout routine and eating healthy.

Sometimes, I feel jaded about it because I’m like, “Screw it, you could get cancer anyway!” I think some of that has to do with the fatigue, too. I’m trying really hard to be patient with myself. 

Girls’ nights are harder now. They talk about sex and kids so much more than I ever realized.

Plus, I’m trying not to drink as much because it’s not good for you, and it doesn’t help the hot flashes. I just feel like I can’t party and go out with them much more. One friend was complaining about an unplanned pregnancy to me, and I almost went off on her. It’s just hard.

A lot of people would come visit me, but that was a big thing. I wanted people to visit, but I didn’t want them to stay all day. I struggled with telling people no because they wanted to help, but I just wanted to be alone sometimes.

If you are a patient and want company, great. If you’re feeling okay and don’t want company but you don’t want to hurt their feelings, just lie and say you don’t feel well.

I adopted a dog in July to keep me company through treatment. My boyfriend was also working from home at the time, but getting a dog was the best thing I we could’ve done.

Especially if you’re losing your fertility, a dog helps. Being a dog mom is so fulfilling and a great distraction. She brings so much joy to both of us.

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Ovarian Cancer, Low Grade Serous Stories