Manda’s Stage 2B Relapsed Hodgkin’s Lymphoma Story

“I wish I would have asked about fertility, honestly… I could have frozen my eggs or I could have prepared for what’s next.”

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Thank you to Seagen for its support of our patient story series! The Patient Story retains full editorial control of our content. The interview has been edited only for clarity.

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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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“I knew something was wrong because I just didn’t feel quite right.”

Initial symptoms

It started back when I was ending high school and the summer after that. I was having a lot of interesting symptoms in terms of itching and my menstrual cycles. I told my mom and she started to look into different doctors that I could go see.

That progressed into a little bit more intense itching. Then I started to have trouble sleeping. I had already started college, into my sophomore year. That’s when the intense symptoms started to happen.

I went to the dermatologist first because it was itching and it seemed like a logical thing to do. Then I started to feel like, “Maybe I’m allergic to something,” and so my PCP sent me to an allergist. They tested me for a lot of things and decided that I was allergic to a couple of different things so [they] started giving me allergy shots. Then I just kept seeing individual specialists for individual things.

“My mom kept taking me to doctors to try to figure it out because she saw that I was not myself during that whole year that we were seeing specialists.”

What was going through your head?

I knew something was wrong because I just didn’t feel quite right, but I had started college and so things had changed from a lifestyle perspective. Maybe I wasn’t eating as well, I wasn’t exercising as much, and maybe I was stressed out. I just thought, Maybe it’s just the new normal.

But then I would go to the doctor and just be like, “It’s still not fixed.” My mom kept taking me to doctors to try to figure it out because she saw that I was not myself during that whole year that we were seeing specialists.

‘He’s in with a patient, but I can get ahold of them for you. You just stay on the line.’ That would have been a red flag because usually, they don’t drop everything.

Diagnosis

How did you learn that there was something serious going on?

A week had gone by and I haven’t heard from the doctor. My parents were constantly asking me. Finally, my dad was like, “We’re coming up and we’re going to figure out what the answer is.” They came up to Chapel Hill and called the surgeon’s office.

My dad was on the phone. My mom and I were sitting with him. The receptionist was like, “He’s in with a patient, but I can get ahold of them for you. You just stay on the line.” That would have been a red flag because usually, they don’t drop everything.

The surgeon came on the line and then my dad, I just saw his face drop, and that was when they were like, “Your daughter has Hodgkin’s lymphoma.” I looked at my dad and was like, “What’s happening?” He was like, “You have cancer.”

My dad, I just saw his face drop… I looked at my dad and I was like, ‘What’s happening?’ He was like, ‘You have cancer.’

What was it like hearing from your dad that you have cancer?

It was just weird because I didn’t actually get it from the surgeon. It was relayed from my dad, which, now that I think about it, probably was good because both my parents were there at the same time.

He’s stoic. It’s almost as if it was a relief because finally, I know what’s going on. But also scared, obviously, because I didn’t quite understand what it meant. A little uncertain and nervous about it.

Reacting to a cancer diagnosis: how cancer patients feel in the moment »

Getting diagnosed with hypothyroidism after radiation

It wasn’t too bad. It was just understanding that for the rest of my life, I have to be tested for this and make sure my blood work is okay. But other than that, it was just trying to find the right dosage and sticking with a plan [to] make sure that you’re getting the right dosage over time. They walked me through that and then my primary care physician was brought on board. He understood what was going on.

Now it’s just routine where every couple times a year, I go and make sure my thyroid levels are correct. Then they [adjust] the medication [as necessary] to keep it stable.

It helped to be on campus and have that normal life because I didn’t really want to stop everything all at once.

Being a young adult with cancer

What was that like being 19 & having to reconfigure your college life to this?

Looking back, it was probably the best thing I could have done because it gave me normalcy. I think if I moved back home and just stopped everything, I would have been unhappy. Having my friends around and a normal college life was actually helpful. Now, my GPA probably wouldn’t say the same thing, but as a person, it helped to be on campus and have that normal life because I didn’t really want to stop everything all at once.

I actually met someone who had Hodgkin’s, an undergrad who was in law school at the time. The doctors put me in contact with him. He was like, “It seems daunting, but I think with the reduced course, you might be okay,” because he had done the same thing.

I was able to take my course slowed down to less than half and still be considered a full-time student. I took his advice. He was really helpful during that whole time.

I don’t know if I took it in stride. I felt like I didn’t really have a choice so I had to do it. It was probably the best-case scenario for me that I was at a campus that had a really great cancer hospital. It almost felt like it fell into place a little bit so it helped drive my decision-making.

Your friends want to help you and they want to be with you. It may not be ideal, but they’re willing to put the effort into helping you, too.

How did you open up about your diagnosis?

After the first diagnosis, I was pretty open to people about it because it was a huge part of me. I felt anybody that I was romantically involved with should know and just could tell if it was going to be a problem or not

A lot of my friends already knew because I was still talking with the same friends. The new friends that I had made maybe weren’t really privy to it, but I felt like they were really just supportive, good people so I didn’t worry too much.

I honestly don’t know how you would bring it up to people who don’t know. There’s a certain part of your life where you just think you’re never going to get it again so why bother telling people about it.

It’s just a select few where you’re like, Maybe this person should know. I just felt that way, at least with my boyfriend, because we had been dating for a long time and there was something there. I should probably make sure that he knew a lot about my health history.

How to tell your family and friends you have cancer »

I’m a cancer survivor, but I’m still dealing with a lot of other things because of that.

Importance of knowing your fertility preservation options

At that time, I feel like [the] doctors did what they were supposed to do. They cured my cancer, but they didn’t really tell me what’s life after that. What are the things you might have to deal with later? And it’s not just infertility.

I had hypothyroidism, which they told me a little bit about. But then you have the potential for heart problems, lung problems… There was a blood clot I had that ended up showing its head 20 years later, in terms of things that I had to go through during my pregnancies.

The cancer’s gone but then [there’s] all this other damage in the process that I wasn’t really privy to. You go through your health history and doctors are like, “Oh, okay. Well, that could be a problem,” then you have to deal with it over and over again.

I’m a cancer survivor, but I’m still dealing with a lot of other things because of that.

I didn’t even bother going to my primary care physician. I just knew.

Relapse

What made you think something was wrong again?

I just didn’t feel right. I didn’t even bother going to my primary care physician. I just knew.

I tried to shove a lot of things into a couple of months that I know I really wanted to do. Then I was like, “Okay, now I’m ready to go tell somebody that this is back.” And that’s how that started in 2010.

‘I think I’m going to go to the doctor because I think something’s up.’

I knew that it was going to take over my life for a while and I just wanted to make sure that I had some nice memories to fall back on once it started doing that.

Why did you decide to wait?

How much worse can it get in two months? I went a whole year without treating it last time so if I spend the next two months just trying to get things settled, then I felt like I could do it.

I knew that it was going to take over my life for a while and I just wanted to make sure that I had some nice memories to fall back on once it started doing that.

Was there a worry?

There was [a] worry I wouldn’t be able to enjoy, that my boyfriend would probably not want to stick around — which wasn’t the case, by the way, but it was in the back of my head. This is just going to wreck my life and so let’s just savor it for the last few months and then deal with it as it comes.

Official relapse diagnosis

I was like, “What stage is it?” They were like, “We don’t stage. We just say it’s recurrence.”

No evidence of disease

How is it thinking about that?

It seems like time has flown by. It doesn’t feel like it was 12 years ago because some things are still very vivid in my memory and other things are really fuzzy.

Thinking back on it, I’ve forgotten a lot of things as well. I don’t know if that was on purpose or my mind was just like, Maybe we should just shove this way far back because you don’t want to remember it.

I was just laying in the hospital bed and a fertility specialist came in. I just received some of my ICE treatment and they were like, “Freezing your eggs is just not an option for you. This treatment, along with the bone marrow transplant, is underway and there’s just not going to be an option for you to have children.” It’s what I took from it. My mom, who was sitting there at the time, was just like, “Wait. She’s not really comprehending this,” because I was on medications.

They definitely had to explain it to me a couple of times. My BMT doctor also reiterated, “Let’s just get you better and we can talk about this later. But as of right now, there’s not going to be too many options for you.” I just took it as I guess I’m not going to have kids.

At that point, I was almost done. Let’s get this over with. Just get me better and then I’ll deal with it later.

How did you process the news?

It was just like mark this down. It’s another thing that’s just not happening. Okay, I guess grad school is on hold. Not happening. Maybe I’m not getting married. Why would this guy stay with me now that I can’t have kids? Let’s just keep marking things that aren’t going to happen.

At that point, I was almost done. Let’s get this over with. Just get me better and then I’ll deal with it later. You get a lot of bad news all at once and so it was a little bit disheartening. But the real thing that I really [wanted] was just to be done with the treatment. Let’s just get this over as fast as possible.

I talked to my parents quite a bit and my siblings. A couple of times, I called my dad crying, “All my hair’s falling out and all this is happening.” He would just be, “This is par for the course. Why are we crying about this?” And I was like, “Well, you know…” And he’s like, “You just have to keep pushing forward.”

I think it just all stemmed from because he had gone through a lot of stuff that I couldn’t even imagine. He was just like, “Sometimes, things just don’t go your way and you just have to go through it anyway. Just know that it can be better after it’s done. But it’s going to be worse before it gets better.”

There were just people like my dad who were like, “You can’t get down on yourself too much. Otherwise, you’re not going to get through this.” I think that was helpful to have that perspective of somebody who can just be like, “Pull up your big girl panties and just get it done.” That’s his mentality and that helped because otherwise, I would just sulk around and do nothing.

Feel bad for yourself, cry, and then get up and move on. Okay, fine. I’ll feel sorry for myself today and then I’ll move on. And so I tried. I tried waking up every day and like, “Okay, what’s the one good thing I’m going to do today that makes me feel good about myself?”

Find answers to the most popular fertility and cancer treatment questions »

I could carry a pregnancy and then my husband could actually be the father of the child. We could plan it so that we could use multiple embryos from the same donor and they would actually be full siblings to each other.

She said, “The good news is you have a cute uterus.” I was like, “Oh, okay. Good to know. I didn’t know they could be cute.” The silver lining is that [I] have things that are still functioning in [my] body so let’s go, let’s use them. I thought that was pretty, pretty nice.

The bad news is that I was fully in menopause. My ovaries were not working. She even showed me a picture. They’re supposed to look like chocolate chip cookies, I think, and mine didn’t.

She reiterated, “A lot more people have to use this route than we think,” and made it sound more like it’s a normal way of doing things. “It’s being done, people are using it, and it’s working so it’s going to work for you. We have a really high success rate with this.” She was just really confident and very hopeful that this was going to be the answer.

During the whole conversation with me and my husband, [there] was never a moment where she didn’t think there was an option. “We’re going to get you pregnant. You’re going to have a baby. This is the way to go.” She was just very confident.

The whole time, I was like, “Well, I don’t know if this is going to work or anything.” She was just like, “Yeah, it’s going to work. I know what I’m doing.” It was just refreshing to have someone who was just like, “This is done all the time and it’s going to happen for you, too.”

I also have a little bit of reservation. Will she be a little bit upset that I’m a cancer survivor and that maybe I shouldn’t be having kids? But none of that came up. “You’re fine. You’re five years out. Your doctor gave you the go-ahead. We’re doing this.”

It wasn’t the path I thought [I] would take, but I got what I had hoped for so why would I change that?

Process of choosing an egg donor

It was way easier than I ever thought it would be. They were really on top of it — the fertility doctor, all of her nurses. They walk you through the whole process and make it super easy.

They already had donors lined up that they thought met my expectations. I wanted someone who was Caucasian because I wanted them to look like me and my husband. I wanted someone who had a fairly good health history so they test them for a lot of different genetic diseases. As far as eye color [and] hair color, none of that really bothered me. I just wanted to make sure that they were healthy and kind of looked like me; that was my only thing. They were like, “Are you okay with having a first-time donor? We may not know if she’s going to be able to produce eggs or not.” I was like, “Yeah, that’s totally fine, too.”

I didn’t have too many requirements so they had quite a few donors that met the requirements and a little bit more. The donors can tell you about their ambition, their goals in life, what they do now, their personality, what they like to do, if they own pets, and the reason why they’re donating. 

This particular donor said she was donating because she watched her aunt go through a lot of infertility issues. She felt because she was healthy and at an age that she could donate eggs that she wanted to do that in honor of seeing her family member go through this.

If this doctor is for real, this is happening… And it did. The first implantation worked.

Importance of fertility preservation options

It’s just part of the cancer journey. It’s part of the treatment, really, and I don’t think people understand that. It just should be a part of how you treat it.

A lot of times, it ends after that last scan and you’re on your own. But it just really isn’t that way. There’s a ton of things that aren’t included in that treatment plan that should be. And I don’t really know how to fix it because I don’t know if that’s [an] oncologist issue. There’s just no guidance after or any help or understanding of what specialists [I] should have in place for the next 10 years in my life because I’ve gone to all kinds of specialists since then.

Just some understanding of what’s going to happen next and the things that you need to look out for because not every primary care physician is going to know what you need. You need to know yourself. It would be nice to have somebody guide you through how to advocate for yourself and where you need to go when you have these things happening to you.

I just tried to do a little bit every day. If I didn’t feel like doing any of it, I didn’t really get down on myself.

‘If you lose hope, then you lose everything. You just got to come in here and do your time. That’s all I’m asking you to do. Just come in here and do your time.’

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