Interviewed by: Taylor Scheib Edited by: Chris Sanchez
When he was just 24, Josh was diagnosed with stage 3A testicular cancer.
Josh’s diagnosis came as a rude shock given his youth and excellent physical condition. He maintains a healthy lifestyle, has no vices, and loves to join triathlons. That said, he had been experiencing several symptoms for some months before his diagnosis, including pain in his torso and shortness of breath, which were easy to shrug off but in retrospect were suspicious.
Armed with a positive attitude, Josh decided to fight his cancer by undergoing chemotherapy. His doctors put him on 3 cycles of bleomycin, etoposide and cisplatin (BEP).
The succeeding months of Josh’s life were traumatic and difficult. Among other things, he experienced serious side effects, including a significant reaction to a medicine there was no substitute for. He also had to face the possibility of becoming infertile. However, his good attitude combined with successful treatments helped him get through those challenging days.
Josh now shares his story with us to grow awareness of testicular cancer and to fight the stigma attached to it; the importance of finding a community that can provide support, and of giving back to said community as well; and the significance of staying positive even when times get tough.
In addition to Josh’s narrative, The Patient Story offers a diverse collection of stories about testicular cancer. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.
Name: Josh T.
Diagnosis:
Testicular cancer
Staging:
Stage 3A
Initial Symptoms:
Pain in his chest, lower back, and abdomen
Shortness of breath, especially during exercise
Mass found on one testicle
Treatment:
Chemotherapy: bleomycin, etoposide and cisplatin (BEP)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Age at Diagnosis: 25 1st Symptoms: Grape-sized tumor on neck; hip and pelvis pain; ultrasound revealed tumor on right testicle Treatment: Chemotherapy (BEP), removal of right testicle, lymph node resection (RPLND), and tumor dissection in the neck
Age Diagnosed: 24 1st Symptoms: Fatigue, one swollen testicle Treatment: BEP chemotherapy, surgeries (including complications)
Steven C.Diagnosis: Non-Seminoma Testicular Cancer Symptoms: Enlarged left testicle, tenderness in left testicle, lump in back (retroperitoneum) Treatment: Orchiectomy, chemo, retroperitoneal lymph node dissection
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
33 year-old Tiffany is undergoing treatment for stage 3A ovarian cancer.
Tiffany was about to embark on a yearlong trip when she received life-altering news, a cancer diagnosis. Her diagnosis not only forced her to postpone her trip, but also convinced her to undergo IVF egg retrieval in order to preserve her ability to have children later on.
Tiffany is in the midst of her ovarian cancer treatment and, as of her interview, was steeling herself to undergo major surgery. But she has many reasons to be positive about her future. She shares her story with us to help others in the same situation.
In addition to Tiffany’s narrative, The Patient Story offers a diverse collection of stories about ovarian cancer. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.
Name: Tiffany L.
Diagnosis:
Ovarian cancer
Staging:
Stage 3A
Initial Symptoms:
Severe bleeding after insertion of IUD
Discomfort and pain after working out
Treatment:
Chemotherapy: Carboplatin and Taxol
Surgery: Total hysterectomy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
My biggest advice is to be really honest with yourself first.
Like, really checking in, are you feeling something or not?
Introduction
My name is Tiffany. I’m based in Austin, Texas. I’m 33 years old.
I love pole dancing, contortion, and I’m learning how to draw for fun, as well as watercolor in my free time.
I’ve been diagnosed with ovarian cancer, stage 3A.
Discovery and diagnosis
I was supposed to go travel abroad for a year in 2024, and was supposed to leave the first weekend of January. Didn’t want to carry a year’s supply of birth control with me, so I decided to get an IUD.
I had an annual exam at the gynecologist, just standard stuff, and then that was when I mentioned an IUD, and so we got that inserted. We did the normal stuff that you would do during the annual exam. The gynecologist didn’t find anything weird then.
At first, the IUD was fine, it wasn’t too painful or anything. About a week after it was inserted, I started bleeding like crazy.
I had my strings checked a month later, and that was okay, too, but I was bleeding a lot. It was like I was soaking through a heavy pad every hour or so. And so I just left it because it went away eventually.
But a couple weeks after the string check, I started bleeding a lot again, and I didn’t really stop bleeding until they took it out. I was having heavy bleeding, and then it would it would kind of slow down a bit.
It just went on for weeks. So that’s why I called them to double check to make sure it was okay.
I called them probably mid December or so. Because usually what happens is like, you call them and they just tell you, oh, it’s normal. It’s an adjustment period for the IUD, you’ll be okay. But I’m leaving in a few weeks. I need you to make sure this is okay before I go abroad.
So finally, they got back to me and they’re like, okay, we’re gonna do an ultrasound to check. I remember going in, I was like, I’m pretty sure this IUD is misplaced. I remember the sonographer going through everything. And then I looked at the screen and I saw this huge hole.
I can’t read the graphics, but I saw her face and I was like, what is going on? I’m pretty sure there’s something more than just this IUD problem. But she’s not able to tell me what’s happening because I don’t think she’s allowed to by law.
I almost was able to talk to the doctor right away, but then I actually had a work meeting, so I had to schedule it for I think the next day or something. I was just really anxious for 24 hours or so. And then the next day I went in and the doctor was like, hey, look, we found a gigantic cyst.
We don’t know what it is, the doctor said. I’m going to need to refer you to a gyno oncologist. Like I’m supposed to leave next week. Can I get an appointment right away? And she’s like, yeah, I’m gonna try to see if we can bump you up. And then she ran this blood test for the tumor marker, CA 125, that same day. So the new doctor can get all the results and stuff.
So I had an appointment I think the next week, right before I was supposed to leave. I was like, well, there’s a huge thing in me, regardless of it being cancer or not, I need to take this out. So I probably do have to postpone my trip. There’s no way, you know, this person can just take it out in a week. So, yeah, I postponed my trip.
In my head I was like, okay, maybe it’s just postponed for a few weeks or a month. Maybe I can head out in February or something, which is not a big deal. But by that time, I had already quit my job because that was the plan.
My last day of work was right before I was supposed to leave. It it just put me in a weird position because, I was like, well, I might leave soon anyway, so I guess it’s just like a month, I don’t need to get my job back. So I didn’t really bother with it. But also, it was just like a strange, in-between time where everything was up in the air.
So I went to the new doctor, the gyno oncologist. And she basically was like, I need to see an MRI. So I had to get that done the next week.
And then after that, the follow up appointment, she didn’t really say it was cancer or anything, actually, even though my blood work was over the chart, my CA 125 was like 4000 and the standard was like 35. So it was crazy high. But, different things can affect your CA 125, such as endometriosis, which I wasn’t diagnosed with. All I knew was that I had PCOS. [Polycystic ovary syndrome (PCOS) is a hormonal disorder in reproductive-age women, causing infrequent or prolonged periods and elevated androgen levels.]
So when I talked to her after the MRI, she wasn’t definitive that it was cancer, but she wasn’t saying that it wasn’t either, because they don’t really tell you until they really go in there anyways. So she basically she knew that she had to take out the ovary that was attached to the tumor. But she asked me, if it’s cancer, what are your thoughts about having kids? Um, because if it’s cancer, usually they take everything out.
It took me a few days to get back to her because it was just so shocking to think about. We ended up deciding that we would keep the other ovary in there, even if it’s cancer, because we wanted to preserve my fertility and see if we could go through the IVF route.
Going into surgery, the doctor thought it’s probably borderline because it’s rare that someone in their 30s would have ovarian cancer. But, I mean, it could happen. She said that if it is borderline, then I probably wouldn’t need chemo. It ended up not being borderline.
What happened during surgery is that she took the tumor out with the ovary, and she said the tumor was hard to take out. It wasn’t like a solid tumor, where, she could just pick it up with the robot and take it away. It was mushy and weird, gross-sounding.
The surgery took five hours, I believe, which was way longer than I expected because, besides taking it out, she also had to wait for a biopsy to see if it’s cancer and then after it’s cancerous, she does surgical staging. So she would swipe samples of different areas of my pelvis. I think it was bladder, bowels, uterus.
She took the omentum out for biopsy to see if there’s any cancer cells there. So that’s also probably why it took five hours. I took up pretty much the rest of her afternoon, so I didn’t really see her until the next day. And that’s when she told me that, hey, it is cancer.
But we didn’t know the staging; we just know that it’s probably more than likely, more than stage two, based on what I saw in there, but not definitive. Two weeks later, during my post-op appointment, I got the report.
So the original report says there were cancer cells in the omentum. So that would put me in stage 3A. But there was another part of the report where they weren’t exactly sure where the origin site is for the cancer.
So they were suspecting that it’s either primary ovarian or possibly could be from the uterus or it’s synchronized cancer, because the type that I have was called an endometrioid ovarian cancer. That might come from endometriosis. So they are thinking that it could be synchronized, but for now they are treating it as a primary ovarian cancer.
So it’s like still not definitive in a way. A little strange because I think the staging changes depending on the primary side.
So if it’s ovarian primary, it’s like stage three, if it’s uterine primary and it’s in the omentum, that could put me in stage four. But then if it’s synchronized then it could be stage one for both. So it’s very confusing. The staging kind of tells you the prognosis, but then all the information data that they have are for like older women. So then it’s not like that information is for my population.
At this rate, like honestly, I don’t look at my prognosis because none of the data is very specific to my population.
So I went ahead and got a second opinion too, just because why not? Insurance covers it. And I got a second biopsy at MD Anderson. And the report came back the same.
So that’s a good thing, that it’s the same, I guess. Ultimately they’re not really going to be able to really find out exactly what it is until they take everything out.
Treatment plan
After the doctor told me about my ovarian cancer diagnosis, she gave me a treatment plan.
So I was going to be having three rounds of chemo, surgery to take everything out, and then three rounds again.
So the midway point for the surgery, they just wanted to get the chemo in me first, but because I already would have had three rounds of chemo by then, they might not be able to really biopsy enough. There might not be enough cancer cells there for them to find out what is really going on.
IVF
About a week after the report and discussing it with her, I started my IVF cycle, so I started freezing my embryos.
That wasn’t fun. It was a lot of injections, doctor’s appointments., and going back and forth, trying to get a discount.
My insurance didn’t cover the IVF cycle, so I had to look into different organizations that would provide discounts on the clinic. And there are discounts for cancer patients, I think in most clinics, at least mine did. And I was able to get help from Livestrong and the Heart Beat program with Walgreens.
The Heart Beat program basically gave me all the medication for free, which was really helpful because the medication itself, it’s like $10,000. And then the Livestrong also helped with the medication as well. It was like a 20% discount on certain things through the clinic.
I think we were fortunate in a sense, because I know a lot of women, they have to go through multiple cycles to freeze 1 or 2 embryos. We were lucky in a sense that we only had 1 shot, just 1 cycle before chemo started. We were able to freeze 8 embryos, which was amazing.
The clinic helped. They were the ones who told me about Livestrong. And they were the ones who applied on my behalf for the Walgreens Heart Beat program.
I think the complicated part, at least with my clinic, it was more like I wasn’t really sure who should be doing what part of the application process. It might have just been a clinic issue, but they weren’t very clear on who is starting? Am I the one applying directly or are they doing it on my behalf? So I had to do a little bit of work in that regards. But ultimately they were the ones who found the programs.
My doctor was the one who referred me to this clinic, so it seemed like she already had a relationship with the reproductive endocrinologist. So before I even went on my consultation, she already knew what was going on.
In terms of figuring out financially, I think we were fortunate in a way, because we had saved up for a trip and so we already had that nest there. If it wasn’t going to cost like that, we would have just done it anyways.
My husband and I, this has been a lot of discussion between like having kids or not. He’s the one that really wanted the kids. I was more like, could be maybe. Maybe not. It was just like, okay, might as well do this because if we don’t do it, we might regret it later.
This is a little bit morbid. If I, you know, pass away in 2 years, I felt at least I left something for my husband—a part of me there for him.
So, the IVF process. The first appointment was just discussing the different options. So I had the option of just freezing the eggs or embryos. But you still have to go through the IVF process. It essentially means they’re just taking the eggs out, the embryo part comes later.
During the process, they would monitor your follicles to see how they’re growing. Usually they want you to start, I think, like day 1 or 2 of your period. Um, I didn’t. I was on a timeline, so it didn’t pertain to me But I also luckily had my period the first day I saw her. So it kind of worked out in that sense.
So the first appointment, the doctor would check to see how many eggs are already there. In a way it was fortunate I had PCOS, so I had extra eggs. Apparently, if you have PCOS, it’s better for the process because you have more eggs.
Once she thinks you’re ready, you will start doing your injections. I did two medications, on my abdomen. The first injection was just so scary because you guess your spouse or someone could help you, but I just did it on my own. The medication helps grow the follicles.
I only had one ovary to do this, for others they might have two. But for my one ovary, she saw like 18 or something on there already. So they’re trying to grow everything at the same time essentially with the medication, but they don’t want you to grow it so fast, your ovary will get too big and then you will get hyper stimulating ovaries, which will cause a lot of pain.
They want to monitor you, every other day or so with blood work to check your estrogen level and also ultrasound. So I had to go to the clinic every other day. They gave me a different medication to start, to kind of balance it out so it doesn’t overgrow.
And then after about ten days, they decided that it was time for the trigger shot. They’re checking the size of each follicle. They want them all to be as big as possible. I think I had three that were like 20mm or something, I can’t remember. And that was when they decided it was time.
So then I did the trigger shot, and then the day after, they did the egg retrieval. During egg retrieval, they put me under, and then the process took like ten minutes.
And then they woke me up and they were like, we took out 22 eggs or something.
Treatment
Chemotherapy: Carboplatin and Taxol
Right after, a week after IVF, I started chemotherapy to deal with my ovarian cancer.
I got a week break between IVF and the chemo cycle. And I went back to Jersey for a wedding.
Okay, so the chemo regimen I’m on, it’s carboplatin and taxol. My chemo regimen is every 3 weeks. I would say it’s only bad the first week, and then it’s pretty much back to normal the next two weeks.
I did so much research before, I feel like I already knew everything before I started. And also, before chemo, they did like a chemo teach where I met with one of the physician’s assistants and they gave me a binder of information. So I already had an idea of what to expect.
Side effects
In terms of side effects, I think the major one is the hair loss. That pretty much happened after cycle 1 and throughout cycle 2 as well. But I think after cycle 1, I was just so anxious, I was like, I’m going to shave it off anyways. Just get it over with.
When I was reading online, I wanted to know when my hair loss would start. And most people said it would start about the second week. So I thought, I wish I knew that because I remember after the first, for like a week, I was just obsessive about my hair.
I would wake up and be like, are you going? Are you leaving me yet? And then when it was still here, I was like, oh my gosh, maybe I’m one of those lucky people. I wish I would have known that it really would start like after the second week.
I was never too attached to my hair. Or at least I thought so. Some women love their hair and they want it to look a certain way. I guess if I cut it and it’s ugly, I didn’t care too much, would be upset for a minute, and then I’d be like, okay, it’s gonna grow back. You’ll be fine.
When my hair started falling off, when I started seeing strands of hair on my pillow, It was just horrific to see that much hair coming out. I did get a little bit emotional. I think because I didn’t have that much time to process everything. Just seeing the hair kind of hit me in the face a little bit.
And then I felt really concerned about how I looked like without hair. I wasn’t sure if I would still feel attractive or if my husband was still find me attractive.
Ultimately, when I shaved my hair off, I was I was kind of surprised that, I thought, I still look good without the hair. I went on a lot of shopping sprees, just for new styles and wigs and makeup stuff. So I think that kind of helped.
Right now, I have days where I’m like, I really miss my hair. Especially like when I go out and I see people with beautiful hair, I’m like, oh, I really miss having hair.
But then most of the other days I’m just like, oh, how would this look on me now? I feel like I get to play a little bit with a different style. And then sometimes I’m also kind of like, I wonder what style is going to stick after this is over. Maybe I’ll adopt some of these new things.
So other side effects have mostly been swollen hands. I’m also having a slight neuropathy, only on my index finger. Very strange. And then a little bit of brain fog, but that tends to fade away after the first week.
Surgery: total hysterectomy
So my next milestone in my ovarian cancer journey, I guess, is my surgery. That’s coming up on May 20th. I get 4 weeks in between surgery and chemo, which means I get an extra week to play.
So the surgery I’m getting will be a total hysterectomy. They’re going to be taking out my remaining ovary, my uterus, the fallopian tube that attaches to the ovary, and my cervix as well.
I am incredibly anxious about it, because once they take out that ovary, that puts me in surgical menopause. And for women that are in forced menopause, I’m high-risk later on for osteoporosis as well as heart disease.
Not to mention, I’ve been reading a lot of other women’s experiences that are around my age, mostly breast cancer survivors. It sounds like there’s like a thing called vaginal atrophy that will happen or might happen as well.
Also, all the other stuff that comes with menopause, like hot flashes. I’m very, very scared just about what might happen.
Also they say that sometimes you don’t get those symptoms right away. So it’s not like I’m gonna wake up and it happens. It might take a few weeks before it happens.
They haven’t really talked to me about post-surgery. I just know I get a 4-week break and then I go back for chemo, but I do believe it’s the same chemo.
… don’t brush away that little voice that’s telling you something is probably wrong.
Shifts and learnings
Support
I felt like because of my ovarian cancer situation, everyone was extra nice to me. I would say I’m very fortunate, because everyone is being so supportive.
My mom lives in Jersey and flies here every cycle to help me out, and my husband has been very supportive, too. My friends like giving me rides and everything, too.
I think it’s going pretty well for what it is.
Realizations
So when I look back, I do feel like I had the symptoms of ovarian cancer, I definitely ignored them. I do crazy workouts, so, yeah, I’m going to be like, there’s some tightness there or I just kind of brushed it off. but when I look back, I was kind of in pain.
I was remembering how there were days after I trained and I would be like, wow. Training really hurt today. And I really don’t want to do this post because it’s putting a lot of pressure in my abdomen and it’s really pretty uncomfortable. But I just brushed it away.
And so I think that if I did not get that IUD, I think it would have gotten me eventually, Because I’m young and healthy. I didn’t think of it as anything. I mean, I didn’t really bring it to the doctor or anything, but even, like, with the whole IUD thing, I felt like I had to really push for them to, take a look at it. And so, it is very important, don’t brush away that little voice that’s telling you something is probably wrong.
I think it’s mostly realizing, this sucks, but I still get to do so much cool stuff later on. Hopefully.
It sucks that I didn’t get to travel, but after this, maybe I can I can travel again, but it’s gonna look a little bit different than I planned because I’m not going to be able to just leave for a year now because of all the monitoring that they do. Kind of realizing that I’m still going to be able to see everything.
But I honestly think what has really gotten me through this is just me on the pole. Because I’m still able to pole dance, and contort, which I don’t understand how sometimes. So that has been pretty incredible, very helpful as well. Like for my mental health, too.
But I think what shifted in the way I’m thinking about it is to just appreciate what I can do, versus going after certain things and being frustrated with it. So I kind of see it in like a new perspective. Oh, I just took a class, and then I never looked back. Yeah.
Pole dancing is like a challenge. I love it because as long as you put the work or the training, the time into it, you will see results. And it’s like a way to express yourself in whatever way you want it to be.
So it doesn’t have to be sexy. It could be like emotional. It could be very athletic or just like, whatever you want. And I really love it for the art form and also for the physical challenge. And also the pole community is incredible. I made so many friends off of it, and it’s just a great place.
Advice
My biggest advice from everything that I’ve learned in my ovarian cancer journey is to be really honest with yourself first. Like, really checking in, are you feeling something or not? Even if the doctor thinks you’re being a little too much, just push them to do something because you never know.
And then really do your research before going to the doctor, because, hopefully you have a good doctor, but, if you don’t, you have the knowledge to back up what you are suspecting. And then be very assertive as to what you’re asking them for.
I would say something like, hey, I have a concern with this. Can we do a scan or something, instead of having them lead the way? You kind of want to almost lead the conversation instead.
And then also be honest with them as to what you’re feeling, too, because I think sometimes people brush away symptoms because they’re scared of what it could be. It’s better to know what it is and deal with it earlier versus later.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Andrea, a nurse practitioner from Spokane, WA, got through stage 3 colorectal cancer.
Andrea’s symptoms began when she was about 7 months pregnant with her son—bloody stool and lower back pain and pressure, progressing to more serious symptoms like rectal pain during childbirth and as many as 20 bloody bowel movements daily—but she was consistently told that they were due to her pregnancy. A colonoscopy, done after the symptoms progressed significantly and her husband was able to get some help, finally diagnosed her stage 3 colorectal cancer.
Treatment–chemotherapy, radiation and surgery–as well as a lot of support, a can-do attitude, and self-advocating, eventually helped Andrea get better. Her story isn’t without some twists and complications, though, most especially an agonizing period during which she thought her colorectal cancer might have progressed to stage 4. Thankfully, this was a false alarm: she was actually already cancer-free, and she remains so to this day.
In addition to Andrea’s narrative, The Patient Story offers a diverse collection of stories about colorectal cancer. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.
Name: Andrea P.
Diagnosis:
Colorectal cancer
Staging:
Stage 3
Initial Symptoms:
Frequent bloody stool
Lower back pain and pressure
Rectal pain
Severe stomach cramps
Treatment:
Chemotherapy: 5-FU
Radiation treatment
Surgery
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
… I was chosen to go through this fight so I could help bring awareness to other people.
We were chosen for a reason, and we need to be strong through this fight.
Introduction
I’m Andrea, I’m from Spokane, WA. I’m 34 years old.
I am a nurse practitioner. I was a nurse for a long time, going on about ten years. And then I went to nurse practitioner school, and now I’m a nurse practitioner in the emergency department. I also was a nurse educator for some time, so I taught nursing students.
I’m married; my husband is a nurse anesthetist who works at one of the local hospitals. We have two beautiful kids: our daughter is going on 5, and our son who’ll be 3 this year.
If I’m not working, I love working out, going to one of our local gyms. We do CrossFit, and that’s like my hobby. It is like my home away from home. Working out, doing those things and spending time with my family and spending time with my friends. I have a really close group of girlfriends, and we tend to do a lot of our little girl’s nights.
I think I’ve been much more outgoing since I’ve been diagnosed and not holed up in my house; I used to be such an introvert. Like, I just want to stay home. I don’t want to go do anything. But after this I’m like, no, I want to go do all the things.
Initial symptoms
My colorectal cancer story starts when I was about 7 months pregnant with my son in June 2021. That’s when I started noticing blood in my stool.
The doctors shrugged it off. Because of my pregnancy, they said it was normal. You can have hemorrhoids, they said. So I didn’t think anything of it.
But it just kept getting worse. I started to have a lot of lower back pain, as well as this feeling of back pressure. I always felt like I needed to go to the bathroom.
Even then, I was told that it was because my baby was sitting really low. He’s sitting posterior, they shrugged. Just pregnancy stuff.
I gave birth to my son on August 9. While I was in labor, I was having an incredible amount of rectal pain. I remember telling my husband, gosh, this hurts so bad—there’s no way this is just a hemorrhoid. I was having contractions back to back, but they paled in comparison to the pain.
Give me the epidural to take the pain away, I said to my husband. Again I was told that it was because the baby’s just sitting very low. But I had had a daughter before, and I knew that this was completely different.
Come October and November, I started to have even worse symptoms. Each and every bowel movement was bloody—worse, sometimes all I would be excreting would be blood. I was having 15, 20 bowel movements a day that were just blood.
I asked my OB to refer me to a GI doctor in Spokane. While they did get me in relatively quickly, in November, once again, my symptoms were only chalked up to pregnancy.
I was told: you’re way too young. You just had a baby. You have a bunch of hormones going through you. You’ve had hemorrhoids. Basically just dismissing my concerns. But at least I did get them to commit to a colonoscopy at the end of December or the start of January.
But something happened in December that sped things up. I was at my cousin’s basketball game, and I had a sudden really severe stomach cramp. And I went to the bathroom and it was all blood clots, the worst one I’ve had. It was just bright red blood with dark red clots.
My husband contacted one of the GI docs that he works with and was like, listen, no one’s taking my wife seriously. Can we please get her in? And the GI doctor went, bring her in next week. I’ll scope her right away.
And December 20th is when I got my colonoscopy and colorectal cancer diagnosis.
Diagnosis and Reaction
I was 32 years old when I was diagnosed with stage 3 colorectal cancer.
Going into the colonoscopy, I knew it would be cancer deep down. But my husband was so reassuring and supportive; he told me I shouldn’t think like that. So when I went in for the colonoscopy, I actually wasn’t terrified or even anxious.
But when I woke up from the anesthesia, the doctor came over to me. He said: there’s a really big mass there. I’m so sorry.
And I think in that moment, I was like: there’s no way this is my real life. You think it will never happen to you, but it does. The thought in my head was: is it everywhere?
My son was 4 months old at that point in time. My daughter was about to be 3 or 4 years old. I was like, am I even going to see my son turn 1? I was in the middle of nurse practitioner school. Why even finish school? Shouldn’t I just spend as much time as I can with my kids?
I remember the first thing we did was call my mom, who was watching my kids, and I couldn’t even tell her. My husband had to tell her. I got on the phone to my best friend, and I told her. And then I had to FaceTime four of my best friends who knew that I was going in for the colonoscopy.
I could die next month, I remember thinking. It is the most terrifying, sickening feeling. The diagnosis really put things in perspective.
I’m thankful that when my diagnosis came out, my doctor really took charge. The doctor came over and said, we’re getting this looked at today. I’ve already scheduled you for an MRI. I’m getting you a CT scan today. I’ve already talked to an oncologist, a surgeon, a radiation oncologist. I’m not letting you leave until we have a plan for you today.
It was a really long day that day because my colonoscopy was in the morning, and then I had to go through the CT, go through the MRI. Luckily, the doctor fixed it up so that the radiologist would read those scans when I was there.
So I was able to find out quickly via my CT scan that there were no other masses anywhere at that point. The MRI did show the tumor and some lymph nodes, but it didn’t show any masses anywhere else. So I felt some relief that, okay, so far it hasn’t spread.
I went home and all I wanted to do was be around my kids, but at the same time, I didn’t want them to see how upset I was. My mom was trying to hold it together and she was having a hard time.
I tried to be normal, but I hadn’t eaten or drank in that day, so I ended up getting so sick that I ended up having to go to the ER for fluids because I couldn’t keep anything down and kept vomiting profusely. I also think I cried every ounce of water that I had in my body out.
So I ended up calling one of the girls I worked with, and she actually snuck me into the E.R. One of the doctors who is a good friend also knew, as well as the provider who took care of me. That level of support was really nice.
Treatment
Chemotherapy and radiation
My colorectal cancer treatment was a whirlwind of “let’s get your appointments going”.
So I actually got called by the radiation oncologist the very next day and they were like, we want to get you in today. We’re going to map everything out for your radiation.
And then I got called from the oncology office and they said, we want to see you today to go over what your plan is going to look like. And so I ended up going to the oncologist that next day, and, he mapped everything out for me.
He said, we’re going to start with radiation, where you’re going to go under 28 treatments of radiation. And while you’re going radiation, you’re going to have a chemo pump. So you’re going to have continuous chemotherapy infusing. And then once you complete those treatments, then you take a week break from the chemo.
Then you do eight intensive treatments of chemotherapy where you come in and get the four hour infusions. After that, you have surgery.
And after your chemo, we rescan you, we remap and see what your tumor is doing. There is a possibility that if your tumor is gone, you don’t have to have surgery.
But I was like, absolutely not. You’re taking that thing out. We’re not watching and waiting for anything. I had already made my mind up that I was going to have surgery.
So I went to the radiation oncologist later that day and got mapped. So he tattooed my back, my abdomen, mapped where they were going to do the radiation treatments. And then I think the day or two after Christmas, I went and got a port placed for all of my treatment.
And I started treatment January 3rd. So really very quickly, I started my first radiation treatment, and then they hooked me up to the pump that I had to wear 24 -7.
Initially the GI doc said, surgery first. But then when I talked to the oncologist he said, typically if it’s stage one, if it’s just this isolated tumor that hasn’t gone into the lymph nodes, we would do surgery where we cut the tumor out and then we do like a clean up chemo. But mine was very eroded. If I would have waited a couple more months, I probably would have had a perforated colon, that’s how bad it was.
And because I had lymph node involvement, we needed to get the chemo in there and kill what we can. The radiation was to kill the tumor, and the chemo was to stop the tumor cells that were floating around from duplicating and so on. That’s why I had to do the chemo and radiation before the surgery.
Surgery
I underwent a pretty major surgical procedure. They basically went in and dissected the entire tumor, plus did a few things on one side of the tumor and then the other side to make sure that it gets all taken out.
Then they did a temporary ileostomy, where they basically take my colon and bring it out through my stomach to let my surgery site heal. I had to have that for 8 to 10 weeks.
I had to be in the hospital for a couple days, just to make sure that everything was working, and that was the first surgery. And then I had that ileostomy for about 8 to 10 weeks, and then I had to go in and have it reversed.
So they go in and they just basically put my colon back together without that tumor in it. And that surgery was actually a little bit more intense. It was much more painful, even though it was a shorter surgery, and I was in the hospital for about two nights with that one too.
When I got told about the ileostomy, you know, my initial thoughts were like, I don’t care. Do it. I just was in that mindset. Do what you need to do to get me better, I don’t care.
But when I actually came home with the ileostomy, it was a very big mental block for me. I felt like I didn’t want to go out in public since I found it disgusting. I never minded taking care of them on other people, but I never thought that I would have to have one.
And I remember the first day that the home health nurse came over to help me figure out how to change the bag and stuff. I couldn’t do it. My husband had to do it because I was so emotionally distraught from it. And my husband actually just said, you don’t ever have to look at this. I will take care of it for as long as you have it. It took me a couple of weeks to finally get used to it.
And actually one of my preceptors for school has an ileostomy and he and I actually became really good friends. And I remember when I found out I was going to have one, he was like, hey, I got your back. I’m going to walk you through this whole thing. I’ve had mine for years. And he was such a big supporter.
He would talk me through it. He’s like, this is just part of our lives now. He was a big reason why I think I did so well with it, because I had him just there, supporting me through it.
And he knew what it was like to have one knowing that it wasn’t permanent. There is an end in sight.
And when I got it reversed, I just remember the doctor being like, okay, it’s getting reversed, but I’m just telling you right now, it’s not going to be a walk in the park. We have removed a lot of your nerve endings, your colon has basically been asleep for weeks. Basically, you might have to potty train yourself again. And I was like, maybe I don’t want it reversed, maybe I just want to keep it.
And so when I had the second surgery, I remember I was in so much pain, I can’t even remember being like, oh, it’s gone. I just was like, get this pain taken care of. Definitely having it reversed was worse than having it placed. And that took a mental toll on me for sure.
Side effects
So the side effects of the radiation, I didn’t have too many. The most significant was fatigue from the radiation, which was insane. More fatigue than I had when I was pregnant with my son, when I was 12 weeks pregnant and I got Covid. The fatigue from the radiation felt maybe 20 times more than that.
I also had a lot of back pain, aches in my pelvis.
They also had said that we’re radiating your uterus, your ovaries, you’re not going to be able to have any more children. They did give me a chance: we can do what’s called an ovarian transposition, where they pull the ovaries out of the radiation field to try and salvage if you want to have kids. And I was like, listen, I have two healthy babies. I need to be there for them. I can’t delay this any longer.
As for side effects from the initial chemo pump, I didn’t have any other than my fingertips turned different colors, like I dipped my fingertips in self-tanner. And everyone would be like, whoa, your fingertips are brown. My oncologist said that the chemo regimen I had to do was called 5-FU, and he was like, oh, it’s the 5-FU fingers. It’s totally normal to have that.
But later on, the side effects from the chemotherapy got way more intense. I went into the first treatment and after the treatment, I felt fine, just a little tired. I was told, though, that the side effects would really hit me—and they did.
Tuesday night after my very first infusion, I ended up so violently ill that I passed out. I got rushed to the emergency room at one in the morning because I was so sick.
When I got to the E.R., my blood pressure was in the 70s. My heart rate was super high. They were like, she is so severely dehydrated, we might need to admit her to the hospital. I can’t even tell you how many liters of fluids they gave me. Every antiemetic possible. I was still so sick.
They called my oncologist. They were like, what do we need to give her? And he was like, you need to give her this specific type of antiemetic. That’s for chemo. That’s really expensive. And hospitals don’t usually carry it. But he’s like, that’s what’s going to keep her out of the hospital.
So after that I went to my follow up appointment. He’s like, we need to do pre-meds on you because that obviously can’t happen again.
And I remember after when I was laying in the hospital after my first treatment, I said, I will not do this anymore. I’m done. I’m done with chemo. I can’t do this for seven more times.
And my mom’s like, you don’t have a choice. You have two children at home. You’re doing this. So we need to figure out what we need to do to make it so you can do this.
So I would pre-medicate, I would get this infusion of this antiemetic that was supposedly only for like chemo patients, before I got my chemo. And then on Wednesday when I got my pump disconnected, I would get fluids and that I did pretty well with that. I really didn’t have any other side effects from the chemo from that point on other than fatigue.
Aside from that, I would usually have to take a nap. I got a little bit of neuropathy towards the end where my feet were really numb and it felt like my feet were asleep, just chronically asleep. Which was pretty common for this type of chemo.
I didn’t lose my hair.
I had so much support and I will always be grateful for it.
Support
I had so much support and I will always be grateful for it.
I’m originally from Portland, Oregon. I have a really close friend group in Portland. I have a really good friend who contacted all my friends in Portland when she heard about my colorectal cancer.
She contacted all my family, all my friends in Spokane, like friends that I have in Arizona. She just went above and beyond, and she basically had them send her a letter of everything they love about me and basically wishes for me and then send pictures. And she put together this book. And so each page was like a friend who wrote a letter to me. I took that with me to my treatments because it was just like seeing how much love and support I had.
My best friend put together a bunch of stickers that said Support Squad Blue for Andrea, and people throughout the hospital were putting them on their water bottles, people I didn’t even know, but worked with her on in her unit and knew how much I meant to her were like wearing, buying these stickers to support me. And so just seeing that was like, so helpful.
I think when you’re literally fighting for your life, I didn’t hold grudges; didn’t get upset or anxious over really little things. I actually had a way better outlook on life when I was going through that because I was like, hey, I don’t know what next week looks like. I’m just going to enjoy everything I can right now, like my children and school.
Keeping Busy
My oncologist was like, you can’t work. You need to just rest. And I’m like, I’m not just going to sit at home and sulk.
So I actually completed my last semester of nurse practitioner school while I was in chemo. And I used my colorectal cancer treatments as my study time away from my kids. So, keeping myself busy and just continuing to push through, really helped me.
But I had days like there there were absolutely times where it would hit me like, I cannot believe that I have colorectal cancer and that this is what I’m going through.
And I would have to go upstairs. I’d lock myself in my room so my kids didn’t see me, and I would completely break down and just have a moment of hysterically crying, like ugly crying. Why? Why is this happening to me? Like, what did I do? And then I’d pop right out of it.
One of my good friends, she’s always like, okay, have your moment in Pity City and then get yourself out of it and let’s go. So I’d always just tell myself that, get out of Pity City. We had our moment, time to get back.
Stage 4 Scare
I had a bit of a scare during which I thought my colorectal cancer might be stage 4, but it hadn’t after all.
I was just starting my job as a nurse practitioner. Right after I completed treatment. Right before I had my first surgery. They wanted to rescan me and see just how much the tumor had shrunk. So I ended up having another CT and an MRI, and I remember being at my very first day of work at my new job, I was training, and I got the MyChart result.
So I opened it up and the first thing I saw was a new lesion on the liver, and my heart dropped. I remember I got through another hour of work, and then I finally just told my preceptor, I need to go. I’ll be back tomorrow.
And I called my husband, and I’m like, I’m stage four. He’s like, what are you talking about? And I’m like, there’s a lesion on my liver.
That day was the worst. Way worse than the day I got diagnosed. One of the most defeating days ever.
I came home and said, we need to plan my funeral, we need to get our things in order. And my husband, at that point, he’s always tried to be so positive. And at that point he literally goes, I don’t really know what else to say other than, we need to get things in order for you. Because he knew, this isn’t good. That day gives me more anxiety and just makes me cringe more than the day I got diagnosed. Because it felt like I had gone through so much for it just to not work.
The next day I remember messaging my oncology team and I was like, can I please can I have a phone call with my oncologist so we can talk about my CT scan? And she goes, yeah, he’ll like, do a telephone call with you or tell a zoom video. I was like, okay. So I went out to my car. I was again at work.
I went out to my car and got on the call, and he had my CT scan pulled up and he was there. And so I was sitting there and I was just waiting for him to tell me. And he goes, you know, the spot on your liver. He’s like, I am 99% sure it’s not cancer. I actually have a call out to the liver specialist to just look at it.
He said, you know, the chemo you have can really damage your liver. And I had actually had on my last chemo, I had labs done in my liver. Enzymes were elevated. And he said, I think this is a piece of your liver that just died from the chemo and is just trying to regenerate. Doc’s calling me right now. She’s reviewing all your images.
So he talked to her and then he got back on. He’s like, yeah, she is pretty confident.
This is nothing to be worried about. So at that moment I was like, oh my gosh. He said, you know, your tumor is actually shrunk significantly. It’s still there. We still need to do the surgery. But yeah, this spot on your liver, I’m just really not concerned about.
Remission
So technically, my colorectal cancer was in remission on the day of my surgery when they pulled the whole tumor out. June of 2022. And I guess at that point, I didn’t necessarily think I was in remission because I was like, well, they still need to scan to make sure they got everything.
They took the tumor out and they take the test, the margins to make sure there was no tumor cells. And I had negative margins, which they said is really good.
But unfortunately I had like eight lymph nodes that had live cells in it. And that puts you at such a high risk for recurrence.
I remember my oncologist being like, you have a 40% chance of going to stage four even with all of this out. And still it’s like a 60% chance of it not happening. Yeah, but 40% is pretty high. Because of that, they were like, we’re going to have you on a really close scan bloodwork every three months for five years.
So it wasn’t until probably my three month scan after that where they didn’t see anything that I was like, okay, I’m officially in remission. I don’t have the colorectal cancer in me anymore.
To this day, I still don’t think I’ve ever gotten to the point where I don’t feel that I have colorectal cancer. It’s just, I think a part of me feels that someday it probably will come back. And I don’t know how to get out of the mindset that it won’t.
Like, even though, my blood work, I get a CT scan, an MRI every three months, and then I get a tumor DNA test where they actually extract DNA from my tumor, and then they draw my blood every three months, and they compare those so they can actually pick up if there’s like, tumor cells floating. Every single one’s been negative since June of 2022.
But I can’t get in the mindset that it’s gone. I just I think that’s just part of it. I just can’t no matter what, I’m like, okay, well, another month where it hasn’t popped up again, but we’ll just wait till the next month like so.
And I think that’s just part of the process of this. Like you just once have once you have colorectal cancer, you’re never going to feel like you’re fully out of it.
Going during the treatment and everything, I felt less anxiety because I think when you’re going through treatment, you feel like you’re actively doing something to get rid of the cancer. When you’re in remission, you feel like a sitting duck, like you’re not doing anything to actively get rid of it, even though it’s technically gone.
So that has been really hard because when I was in treatment, I’m like, oh, every day I’m going in that’s killing more of those cells, and it’s getting rid of it, and you feel like you’re actively taking care of it. And then sitting in remission for the past two years, I think, okay, is this next scan, the one that’s going to pick something up, is this next bloodwork, the one that’s going to pick something up.
You just kind of feel it’s just like a waiting game. I think it’s because, you know, they say you can’t say you’re cancer-free until five years out.
So statistics show that I was 71% at stage three B, which I was I have a 71% five year survival rate. In hindsight 71% is great, but there’s also that 29% rate, that’s not. And so, I also get to the point where like, okay, yeah, I’m two years out from this. Does that mean I only get three years left? So I just get into a negative headspace and you just have to take a lot to get yourself out of it.
There are going to be dark days. There are going to be days where you feel like you cannot go on any longer. I had plenty of those days where I felt like, I cannot, I don’t want to wake up tomorrow. I cannot move on from this.
Just know that we can. There is a light at the end of the tunnel.
There is a bright side, even though you don’t feel like there is.
Lessons and Learnings
I am a huge advocate now for self-advocating.
I’ve had people reach out to me, on Facebook, on Instagram who’ve seen my story and they’re like, hey, I started to have these symptoms. I went to my doctor and my doctor was like, oh, you know, we’ll just follow up in a couple of months.
Absolutely not. You find yourself a new doctor, you go to an urgent care, you go to an ER and you say, this is what I need, this is what I want. You have to push for it. And, you know, I have told people: exaggerate your symptoms a little bit, like if you had one bloody bowel movement, go and you say I’m having multiple bloody bowel movements.
You get the colonoscopy because right now the colonoscopy age is 45, which is so crazy to me. With the rates of colon cancer showing up in people 18 to 35. I read an article that showed rectal cancer is supposed to increase by 112% in patients 18 to 35 by like 20, 35 or something crazy like that. And then colon cancer is supposed to increase by like 114%, just some outrageous number. Then it’s supposed to be the leading cause of cancer death in people 18 to 35.
And yet the colonoscopy age in the United States is 45. I’ve been in ER medicine for ten years now, but I’m a new provider and I’ve actually had a couple young patients come in who have had similar symptoms and they’re like, yeah, my primary doesn’t take me seriously.
And I’m like, we’re gonna call GI here in the ER today. We are going to try and get this figured out. We need to lower the age. But I also understand that with the increased amount of cancer cases and people needing scopes, they’re overwhelmed too. There isn’t enough providers.
I just think that we need to stop making it an age thing like it is. Colorectal cancer is not a 50 year old man’s disease. Someone who is 19 can get it, someone who is 20. And you can do all the right things and still get it.
I have never smoked a cigarette a day in my life; I do not do drugs; I hardly drink alcohol. I work out and I eat relatively healthy. And I still ended up here. And I had genetic testing. I have no genetic risk factors. I have no family history. So it can happen to anyone, it can literally happen to anybody.
Advice that I’d have for anyone in this situation is that there is a reason for everything. There is a reason that we were chosen to go through this fight.
I look at it as like I was chosen to go through this fight so I could help bring awareness to other people. We were chosen for a reason, and we need to be strong through this fight. We need to be there for our friends.
There are going to be dark days. There are going to be days where you feel like you cannot go on any longer. I had plenty of those days where I felt like, I cannot, I don’t want to wake up tomorrow. I cannot move on from this.
Just know that we can. There is a light at the end of the tunnel. There is a bright side, even though you don’t feel like there is. And know that your feelings are validated.
I had people be like, look at you, you’re still here. It’s like, no, you don’t know. You have no idea how this is feeling. And we are the only ones that will know truly how this feels. Know your feelings are validated, but know that you can get through this. I’m always here to talk to anybody who’s going through that.
My other thing is, stay off of the internet. I was in that support group for a little bit, but then it got to the point where I was seeing so many just negative things, stuff that started to bring me down, and I’m like, I had to remove myself from it. Stay off the internet, stay off of social media, stay off of any of that. That is the best advice I can give, because you will go down a rabbit hole of so many things, and that’s not what your body needs.
And your fight is your own fight, like my colorectal cancer fight isn’t somebody else’s. Like we’re all going to be different. Try not to compare it to other cases. Just know that, like your fight’s your own and you’re going to be different.
Initially misdiagnosed due to overlapping symptoms with his existing condition, Matthew experienced concerning symptoms such as dark urine, pale stool, and intense itching. Eventually diagnosed with metastatic pancreatic cancer, Matthew underwent different combination chemotherapy treatments, including FOLFIRINOX (leucovorin calcium or folinic acid, fluorouracil, irinotecan hydrochloride, and oxaliplatin) and GAP (gemcitabine, nab-paclitaxel, and cisplatin).
Despite setbacks and the grim prognosis associated with pancreatic cancer, Matthew’s tumor responded positively to the new chemotherapy regimen, leading to tumor shrinkage and the disappearance of metastases in the liver. Following a successful Whipple procedure, Matthew emphasizes the importance of not being defined by statistics and advises others facing similar challenges to live life to the fullest while also taking their health seriously.
His story highlights the unpredictable nature of cancer treatment, the importance of advocating for oneself in medical settings, and the significance of cherishing each moment, even in the face of adversity.
In addition to Matthew’s narrative, The Patient Story offers a diverse collection of cancer stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.
I live in Hazel Park, Michigan, with my girlfriend Natalie and our pug Monique. Because of the nature of my illness, I haven’t had a job in three years, but in my former life, I was finishing a PhD. I was going to be an academic.
Pre-diagnosis
Initial Symptoms
The most popular narrative surrounding pancreatic cancer is that not only is it very lethal but also very difficult to diagnose. The pancreas is deep in the body. The earlier symptoms are very nuanced, can go unnoticed, and can also be misdiagnosed as a multitude of other things. By the time you’re experiencing symptoms, the cancer has spread outside of the pancreas. I don’t want to say it’s too late, but that’s what conventional wisdom is.
I was diagnosed with Crohn’s disease when I was 25. Gastrointestinal distress, which is one of the more perceptible symptoms of pancreatic cancer, was par for the course for me. I probably wouldn’t have noticed even if I didn’t have Crohn’s. I lost some weight over the months, but it wasn’t until late January 2021 that I started to experience starkly distinct symptoms.
It was the COVID pandemic. I lost my job and moved to a different city to help my friend with his business. His business closed and he moved away, so I was alone when all this started.
I had dark urine and bone-white stool. I didn’t even notice the stool color for a while. At first, I thought I was hungover. I had a few beers the night before so I drank some Gatorade and lay in bed, but the urine did not get lighter.
My skin started to itch. The bathroom symptoms were pretty jarring, seeing urine that dark and poop that pale, but the itching was probably the worst. The palms of my hands and the bottoms of my feet itch. It was worse at night. I never felt anything like it before and those are hard places to scratch.
After a whole night of itching, I put my hands and feet in the tub under hot water to numb the sensation. In retrospect, it’s jarring to think about burning my hands and feet to alleviate the pain, but the itching was that significant.
Not everyone gets the itchiness. There seems to be some controversy because not every pancreatic cancer awareness campaign includes itchiness. I experienced it and it was horrible.
When something started to happen, I sat on it for 48 hours before I finally told someone. It wasn’t the most responsible, but in retrospect, not that bad. I was in a long-distance relationship with a woman I knew from graduate school. I told her and she said, “You should go to the doctor.”
I have a lot of medical anxiety. I have never been a good patient. For someone with such anxiety about doctors and hospitals, I needed someone to tell me.
Going to Urgent Care
I had recently moved to Durham and didn’t even have health insurance, but I went to an urgent care center. My blood test results showed that my bilirubin was high. We get some more tests back. The nurse said, “You don’t have a doctor here yet and these test results are troubling. You should go to the ER.”
Going to the Emergency Room
I went home to sleep because I hadn’t slept in three nights. I was so tired that despite the itching, I passed out. Early the next morning, I went to the ER and that was the beginning of my journey.
They admitted me to the hospital and ran some more blood tests to see what was going on with my liver enzymes. They did an ultrasound and an endoscopic ultrasound.
Bile Duct Stricture
They found that there was a stricture in my bile duct. Your liver produces bile, a digestive enzyme stored in your gallbladder and then released into your small intestine to digest fats and other foods. The tube that brings the bile down goes through the head of your pancreas. That tube had a stricture, so it was closed off. When bile can’t be distributed normally, you end up depositing it in your blood and your flesh, and that causes jaundice and elevated liver enzymes.
With the endoscopic ultrasound, they were able to place a stent in my bile duct in the hope that it would stretch it out. They told me to come back in a few weeks to have another endoscopy and remove the stent.
There was no sense of urgency. I was an otherwise healthy person with a history of colitis. They didn’t think that this was anything scary.
After they removed the stent, the symptoms came back, so they decided that it was my gallbladder causing the symptoms. With pancreatic cancer, it’s very common for people to assume that it’s a gallbladder issue. They decided to take my gallbladder out. After the surgery, the symptoms return.
It was late April. I went to my gastroenterologist’s office, who was the one who did the endoscopy. She said, “I don’t know what’s happening, but you for sure don’t have cancer. We have done so many brushings and you definitely don’t have cancer. If you have cancer, I will roll over in my grave.” I left her office feeling pretty confident.
Diagnosis
Getting the Official Diagnosis
Three hours later, I got an automatic notification on my phone from MyChart. One of my cytology reports came back. It said adenocarcinoma. I didn’t know what that meant, but I knew it wasn’t good.
I sat with that for about two hours. Then the surgical oncologist who did my gallbladder surgery called me. My case got automatically referred back to him. He was out of town and called me using his personal cell phone.
I told him, “This lady told me I definitely did not have cancer and now I do so I’m freaked out,” and he apologized. My surgeon is the salt of the earth. He calmed me down. I don’t know if he remembers it this way, but I’ll never forget this conversation. He said, “If this is cancer, the tumor’s very small and I should be able to get this. I’m confident.”
The area in which they found the adenocarcinoma is called the ampulla of Vater. Everything in this part of the body is pretty small and overlapping so pancreatic cancer could be an explanation. But given my age and, let’s face it, the taboo around death, no one was talking about that.
When pressed, the doctor told me ampullary cancer, which has a higher survival rate and is still incredibly rare for someone my age but less rare than pancreatic cancer in the same age category.
Treatment
Discussing the Treatment Plan
Because of the size and the layout of this part of the body, they do the Whipple procedure, also called the pancreaticoduodenectomy. They do the same surgery for ampullary cancer as they do for pancreatic cancer.
Five days after the phone call, I was in his office and he said, “I’m going to remove part of your pancreas and part of your small intestine.” I didn’t have a gallbladder, but that also would have gone including part of my stomach.
My surgeon told me that they cut me open and, contrary to what they thought, found a tumor on the head of my pancreas that had spread outside of the pancreas. Metastatic pancreatic cancer is considered inoperable so when they saw that, they closed me up.
Because of my age and because they suspect that I’m a BRCA2 mutation carrier, the surgeon said, “We have to confirm with genetic tests, but I’m pretty sure you have this particular genetic abnormality. If that’s the case, then there are targeted therapies that might work for you.”
He said, “This is a mean cancer. But because of your particular situation, after treatment, we might be able to try the surgery again in a year.” For pancreatic cancer, surgery is the only long-term survival solution. Chemotherapy and radiation are life-extending, but they’re not curative. He was pretty confident, at least in the context of a lethal diagnosis.
Later that day, he introduced me to my oncologist. He was not as confident. When pressed, he said, “With treatment, you might have 1 to 3 good years left, but that’s it.”
FOLFIRINOX Chemotherapy
This was at the beginning of May 2021. My wound had to heal. Three weeks later, I started chemotherapy. Like a lot of other people with metastatic pancreatic cancer, I was given FOLFIRINOX, which is five different drugs. It’s awful. Chemo combinations are all awful, but FOLFIRINOX was really, really abrasive.
I had a scan after three months on FOLFIRINOX. The oncologist said, “Your tumor shrank a little bit,” but you can tell from the way he’s telling me that it could be an imaging error or a minute retreat that it’s barely perceptible.
At my next CT and MRI three months later, the tumor grew. It had metastasized to my liver so things were not looking good. At this point, I was not confident that I would be a special case or a miracle. I thought this was it.
Switching Chemotherapy Regimens
My oncologist switched me to a different chemotherapy combination. He told me there was a combination that some researchers found was promising for people in my situation. It was gemcitabine, nab-paclitaxel, and cisplatin (GAP).
I was honestly relieved because after being on FOLFIRINOX for almost six months, the neuropathy had gotten so bad that I couldn’t get out of a chair by myself. I needed someone to hoist me up. I was pretty thin at this point. It was miserable.
On the new chemotherapy regimen, my quality of life improved dramatically. By the time my first set of scans came around three months in, some of the spots on my liver had started to disappear. I did three more months of chemo and made it through.
I didn’t lose my hair. I’m six feet tall. I was 215 lbs when I was diagnosed and miraculously maintained a healthy weight so I’m very thankful for that. At this point, I thought I was still dying sooner rather than later so I was trying to have fun and it certainly made having fun a lot easier.
Post-Treatment Scans
In March 2021, he looked at my scans and, if memory serves, they could not identify cancer outside of the tumor.
Almost a year to the day, they attempted to do the Whipple and, this time, it was successful. When Dr. Allen came into my hospital room, he said all of my margins were good and the lymph nodes they tested were negative.
Before this, they couldn’t see any cancer on the CT or MRI, but that didn’t mean that my peritoneum wasn’t covered in cancer. That just meant that they wouldn’t be able to tell until they got in there. They were pleasantly surprised that things had worked.
Follow-up Protocol
The last scan was a lot smoother than the others, but they’re incredibly difficult. I get a scan every three months for the next six years, but the chances of me living out those six years are astronomically small. Pancreatic cancer has a remarkably low five-year survival rate. It’s unlikely that I will see all of that time, at least on paper.
Words of Advice
It’s important to remember that you are not a statistic. I was diagnosed with something I wasn’t supposed to have at my age. It was very unlikely. It was supposed to kill me and I didn’t die so, in a sense, I beat the odds not once, but twice.
People think that pancreatic cancer is an old person’s disease. I think that’s why no one ever looked because no one ever even thought that I could have pancreatic cancer. I’ve heard over and over again that I’m too young. Statistically speaking, they’re correct. For people under 35, it’s incredibly rare, but there is a difference between statistical analysis and what statistics are for, and encountering a patient one-on-one.
Treatment is not linear. Pancreatic cancer is often thought of in linear terms as a quick, short trajectory to death. We assume that if treatment will work, it will work immediately. You don’t take one step back and one step forward. In my experience, that’s not true. Sometimes things get worse before they get better and it’s not a reason to lose heart.
Have a drink, eat the cheeseburger, and live your life to the extent that you can. That’s how I lived. Take your health seriously but also meet yourself where you are.
Symptoms: None; found the cancers during CAT scans for internal bleeding due to ulcers Treatment: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled)
Cancer Details: Found after Galleri blood test and MRI 1st Symptoms: None Treatment: 5FU (folfirinox), Gemzar, NK cell expansion therapy, Dendritic cell expansion therapy, Neoantigen peptide vaccine
Courtney, a high school English teacher from Spokane, experienced symptoms such as fatigue and blood in her stool that led her to suspect she had colon cancer. Despite initial dismissals from multiple doctors due to her age and lack of family history, Courtney persisted in advocating for herself, ultimately undergoing a series of tests, including colonoscopies and scans, which confirmed her suspicions. Diagnosed with stage 3A colorectal cancer, Courtney underwent surgery to remove the tumor and lymph nodes, followed by chemotherapy as a precautionary measure.
Throughout her treatment journey, Courtney faced various challenges, including side effects from chemotherapy such as hand-foot-and-mouth sores and neuropathy. Despite these obstacles, she pushed forward, continuing to teach full-time and engaging in physical therapy to regain her strength. Three years into remission, Courtney emphasizes the importance of self-advocacy, listening to one’s body, and pushing for answers, especially when faced with medical dismissals or ambiguity. She encourages others to trust their instincts, seek support from loved ones, and persevere in navigating the healthcare system to ensure proper diagnosis and treatment.
Name: Courtney H.
Diagnosis (DX):
Colon Cancer
Staging:
3A
Symptoms:
Blood in stool
Fatigue
Treatment:
Surgery
Chemotherapy
Capecitabine
Oxaliplatin
Advocate for yourself, know your body, listen to your body, and keep pushing until you find answers.
Courtney H.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
My name is Courtney. I am a teacher. I teach high school English – specifically honors 9 English and mythology. I am a big lover of reading. I like to play outdoor volleyball, garden, and explore. I live in Spokane, in the Pacific Northwest. It’s so beautiful. We have four seasons and lots of activities and different things to do. I like to spend time with my niece and nephew.
What were your first symptoms?
I took an anatomy and physiology class in college, and one of the only things I remember from that was that the professor said, “Most often when you have internal bleeding of some sort, it is your body’s inability to heal itself, and that usually comes in the form of a tumor.”
What had happened was I had gotten a teaching job in Othello, where I grew up, and I moved down there. This was August of 2020. I was a very busy new teacher. I was the head cheer coach for a cheer program. I worked a lot of jobs in grad school, and so I just was very used to being on the go all the time and having a busy and packed schedule.
I knew I was sick. I knew I had colon cancer, so I just kept pushing.
When I moved to Othello, I started showing one symptom – I had blood in my stool, and I instantly knew. I knew instantly that I had colon cancer. Moving down to Othello, I had to get all of my records and everything transferred down there, including all my medical stuff. So I wasn’t able to go in and see a doctor until October. My symptoms kept progressing, and I just knew when that started happening. I was trying to find somebody that could help me find the exact diagnosis. The answer.
Did you have any additional symptoms?
Just blood in the stool and fatigue. My friend’s mom, who’s a nurse, did a blood test on me and she said I was very anemic. What we ended up finding out when they had taken the tumor out is the blood flow was feeding the tumor, and that’s why I was so anemic.
The first general practitioner doctor I went to, he dismissed all my symptoms and said, “There’s nothing wrong with you. You’re thin, you don’t have a family history. You just need to make some dietary changes.” I was like, “Well, I’m going to keep trying to find answers.” It was in the middle of COVID, so everything was pushed back. Then symptoms kept getting worse. When I came home for Christmas break – home was Spokane – I saw a different doctor and it was the same thing. He spent about an hour with me, ran some tests, dismissed all my symptoms, but I knew I was sick. I knew I had colon cancer, so I just kept pushing.
The first doctor in Richland, he actually had put in a referral for me to see a GI specialist. I was able to see a GI in January of 2021 and [experienced] the same thing. She dismissed all my symptoms. Finally I said, “Listen, this isn’t about you being right or me being right. This is about figuring out what’s wrong. You’re speculating and I’m speculating.” They were all saying, “We think you have Crohn’s or diverticulitis, diverticulosis, or a bleeding hemorrhoid.”
One of the greatest skills that my parents ever taught me was the ability to advocate for myself and to know your body.
I said, “No, I think that I’m sick. What can we do?” She said, “Well, we can give you a colonoscopy. You’re too young and they’re very expensive.” I said, “Well, I’m a teacher. I have great health insurance. We need to do this. I think it’ll give me peace of mind knowing that we have tried everything.”
Receiving a colonoscopy
Months later, she did a colonoscopy and found the tumor. That was February of 2021. That whole month and a half that I went through 9 different tests. I did 3 colonoscopies, a sigmoidoscopy, 2 CAT scans, a PET scan, and an MRI. There’s another one I did but I can’t remember the name of it. All of those tests brought me to the diagnosis. Now what are we going to do? What’s the plan of action going to be? I got a team together.
What tests did the first doctors do?
He did a blood test and some general stuff. He felt my stomach to see if I had any lumps or bumps. Then he went through and looked at family history. Obviously, I don’t have a family history of it. He said, “You’re thin, you’re not pre-diabetic.” I was in Richland, Spokane, and then I went to Kennewick. So three different cities, three different doctors. The doctor in Spokane pretty much did the same thing. They didn’t do anything extensive because you can’t really diagnose it unless you actually get a colonoscopy.
The problem was, neither one of those two doctors could perform that. Then they just dismissed my symptoms. They said, “Well, we’re not going to put in a referral for you to have a colonoscopy because we don’t think, from our experience, that you have it. I really had to beg the GI specialist to give me one.
We did a blood test with the first doctor and he didn’t see anything abnormal. Then the doctor in Spokane didn’t really see anything abnormal. But my friend’s mom, who’s a nurse, knew what to look out for because I told her what was going on. She did her own test and said, “You are severely anemic. Something’s going on.”
Did your insurance cover the cost of the colonoscopy?
I paid a little bit out of pocket, but it was mostly covered. The problem was, and this is something that I think a lot of people run into when they’re getting tests done, especially a colonoscopy or sigmoidoscopy. My insurance company did not want to pay for the right type of drugs. I didn’t know that. I didn’t hear the confirmation. They actually had to tell my parents, and it took 8 hours for the drugs that they gave me to wear off. So I actually didn’t find out about the tumor until the next day. My parents waited to call because they tried to talk to me after the procedure and I was just bonkers.
Surgery
The importance of advocating for yourself
They dismissed the symptoms because I didn’t fit the profile, but one of the greatest skills that my parents ever taught me was the ability to advocate for myself and to know your body. I just knew I was sick. I had that feeling in my stomach. Sometimes science can only go so far, and sometimes you have to put it in your own hands and keep pushing for it. It was a unique set of circumstances, because when I did my colonoscopy, COVID cases were very light, so I was able to go in and get a colonoscopy. When I had my surgery, COVID cases were really light, so they didn’t push my surgery back. These were just perfect little windows where things ended up really working out in my favor.
Formulating a treatment plan
Because I didn’t have the right drugs, she couldn’t finish the colonoscopy. I would have to come back 4 days later and do another one. I came back that Friday. I had [the first one] done on a Monday, came back that Friday, and everything else looked clear. She said, “I’m 98% sure that this is a cancerous tumor. We’re going to send it off to have it biopsied.”
It took two weeks to get back. The next conversation, I said, “I know a surgeon who saved my dad’s best friend’s life. He had stage 4 rectal cancer and he’s been in remission for 20 years. I want that guy.” She was going to put in a referral for somebody else. I said, “No, I want this guy.” Then everything started to move, all the tests.
After all of the tests came back – because the original plan was to do some radiation, 6 weeks of chemo, and then do surgery after the MRI, – the radiologist called me and said, “This is miraculous, but your tumor is a lot smaller than we thought, so we’re going to operate. Nothing else is lining up in your body, so we’re just going to go for it and operate.” So they did.
Describe your surgery
Dr. Holbrook went in and did a lower anterior resection and took out part of my colon, 21 lymph nodes, and my appendix. He said, “I had a stage 4 appendectomy patient who’s 17 years old last week. I just thought I’d take your appendix out.” He spent about 4 hours in surgery. He just retired last year, but he’s one of the best in Spokane. I trusted him.
The prep work was I had to go onto a liquid diet about 48 hours before. They gave me some things that they wanted me to take prior. After I was in the hospital for about 4 days, I had a series of things that I had to go through to get out of there. I had round the clock bloodwork. They would come in at 2 a.m., they’d come in at 6 a.m.. They were checking fluids and different things like that.
As far as the procedure, he just went in. He didn’t tell me how much of my colon he took out, but he took out the sigmoid region of the colon. That’s the end. He took that part out and did the lymph node pluck. After that, I was on a liquid diet for about 3 weeks, giving my bowels a break and allowing things to heal. He was able to go in and do it minimally. The incision where he went in was about this big. He was able to go in right underneath my stomach and do it.
Chemotherapy
What stage were you in?
We got a really good prognosis back. I had a stage one tumor. There were just a few little cancer cells that had broken off and gone into one lymph node, so I had a really good prognosis.
Preserving fertility before starting chemo
I had my 3 week clearance from surgery, and then I actually harvested my eggs, and then I did chemo. It was boom, boom, boom. My body had been through some things. Harvesting your eggs is quite an interesting process. I didn’t know this. When you go through and you do all the things, they monitor you, they take your temperature, they do all the things.
The day before my procedure, they did a COVID test on me and it came back positive. I didn’t know I was asymptomatic. Seattle Reproductive had to fight with Seattle to advocate to harvest my eggs because it’s a $15,000 procedure. They ended up saying, we’re going to suck it up, risk it, and do her procedure. Then I started chemo right after I was cleared from COVID.
I didn’t have to do chemo because of my prognosis, but my surgeon and team recommended that I do it as an insurance policy. I was prescribed 2 different types. I had an infusion chemo which entered through a port and a pill chemo. I would do one infusion every 3 weeks. Then I was on pill chemo for 2 weeks at a time and I’d get a break at the end of it.
Which chemos were you on and did you have side effects?
Capecitabine. The infusion chemo was called oxaliplatin. I had side effects with each. With capecitabine, I had hand-foot-and-mouth, where you get really bad sores everywhere. The other chemo was oxaliplatin. It’s a platinum chemo. It had some really strange side effects. You couldn’t touch anything cold. You couldn’t ingest anything cold. I couldn’t drive in my car with the AC on or it could close my throat. Everything had to be room temperature or hot.
It was in the middle of the summer, so one of the biggest issues I ran into was I was dehydrated a lot. I was hospitalized 2 different times for dehydration which was scary. I lost a lot of weight. I think I lost about 25 pounds. I tried to eat when I wasn’t hungry. I had to watch what I ate. They tell you you can’t have raw fruits and vegetables while you’re on chemo, which is so weird because you should be eating healthy foods, and they said to eat what I could.
The first two days after infusion chemo and pill chemo, you’re the sickest, you’re nauseous. It’s really, really hard to get up and move around. With oxaliplatin, like I said, it’s a platinum chemo so it causes neuropathy. You have a lot of tingling going on in your body. It got to the point where my eyes were affected by it. I could taste it in my mouth. It was very all-consuming throughout my body.
Stopping oxaliplatin
I did my own research about my particular prognosis and I decided to stop oxaliplatin after 4 rounds. That’s the infusion chemo. A lot of patients push past that, and there are some patients that end up disabled from doing that chemo. I did not want to do that. I didn’t want to risk that. It was making me so sick that I could barely eat.
Did anything help alleviate your chemo symptoms?
When I was dehydrated, I would go in and get pumped with fluids. That helped. I did take Zofran to help with the nausea. You can’t be in the sun either when you’re on chemo. You have all these things that you can’t do.
The best thing that helped with the side effects was to get my mind off of it.
I think for me, the best thing that helped with the side effects was to get my mind off of it. I taught full time while I was on it. That was my choice. I didn’t want to lay in bed every day and dwell on it. That’s just my personality so I decided that I was going to work and let that be the thing that would help get my mind off of it. I did oxaliplatin for 3 months and capecitabine for 6 months.
When I went back to school to teach, I did physical therapy and that helped a lot. It helped me build up strength because I had lost so much muscle mass and lost so much weight and it helped with getting through those days.
Reflections
How long have you been in remission?
I am almost at the 3 year mark of being in remission. I count it as April. My oncologist counts it as November because that’s when I finished chemo, but I think that the surgeon got everything.
How often do you get scans and do you experience scanxiety?
I don’t think that it ever really leaves you. I think that it stays with you.
I just hit the 2.5 year mark, so now I go every 6 months. I think that’s one of the hardest parts. I was joking with a friend that I’m a part of an exclusive club now because it doesn’t really ever leave you. With scanxiety, I just do my best to just try and stay positive. It’s always quite exhausting because it’s a 4-day process – blood work, scan, and meet with your doctor.
My aunt is a phlebotomist, so she’s always encouraging, giving me tips on how to stay positive and hydrate, make sure you’re ready to go. But it is a real thing, and I honestly don’t think that it ever gets any better. I think that you learn how to manage, how to live with it. The farther out that you get, you feel better. But I don’t think that it ever really leaves you. I think that it stays with you.
What advice do you want to share with cancer patients?
Advocate for yourself, know your body, listen to your body, and keep pushing until you find answers.
You need to advocate for yourself and you need to be able to listen to your own body. Science only goes so far. Knowing, understanding, and listening to your body is really important. Because if you’re sitting in front of this doctor that doesn’t know you, you’re just a statistic. They’re trying to see where you fit, and if you don’t fit the category, you don’t fit the profile, of course they’re not going to suspect anything.
I also think that you have to hold on to your faith and keep pushing through roadblocks and things that are in your way. You just have to keep going until you find the answers that you really desire to have. For me, that was, I’m sick of hanging out in ambiguity. I know I have it. You are speculating, but that’s why we have science. That’s why we have these things. We shouldn’t be profiling people based on their age or the way that they look. We should be listening to the patient and to their concerns.
Advocate for yourself, know your body, listen to your body, and keep pushing until you find answers. That’s why I’m alive and well today, because I advocated, and I continued to push until I got the answers that I needed. I don’t blame any of them. They’re doctors, they’re human, but I do think that they need to listen to patients better. I think that they need to listen to their patients, listen to the concerns that they have, and really do a better job of putting something in place that is going to help. Help eliminate this ambiguity. For people that may not feel as comfortable to advocate, you just have to remember that you know your body. So even if it’s something that’s totally foreign, talk to somebody about it and try and find those answers that you are desiring to look for.
Interviewed by: Alexis Moberger Edited by: Chris Sanchez
Laura survived stage 4 kidney cancer.
Originally from south Louisiana, Laura now lives in Southern California. She splits her time between working full time in marketing in the gaming and hospitality industry, being a kidney cancer patient advocate, enjoying her sports and hobbies, and caring for her family.
Laura had been struggling with her health for at least two years before her symptoms were properly diagnosed as cancer. She suffered from elevated blood pressure and fatigue so significant that she would sometimes have to nap in her car during lunch breaks, and was also found to have a very high red blood cell count. But the doctors she would consult chalked her symptoms up to lack of sleep, stress due to her demanding job, excess weight, and so on.
Later on, Laura’s health took a turn for the worse. She started to experience back pain so bad that she sometimes had a hard time walking, and her legs became so swollen that she was unable to wear pants to a dinner out to celebrate her 29th birthday. She returned to the doctors, who started taking a closer look at her symptoms and ordered more procedures.
Blood work uncovered kidney issues. Her doctor told her to have a CT scan done that week, but she decided to take immediate action. That very night, just 5 days after her 29th birthday, she went to the emergency room. It was a pivotal and timely decision: the doctors discovered that she had stage 4 cancer and a massive 13cm tumor on her right kidney. The doctors also found that this tumor was what was causing her legs to swell, because it was blocking her vena cava–the main artery bringing blood back up to the heart from the lower parts of the body–making immediate treatment even more urgent. Laura was also diagnosed with the rare genetic disorder, hereditary leiomyomatosis and renal cell cancer (HLRCC), or Reed’s Syndrome.
Laura’s ER surgeon, a kidney cancer survivor himself, connected her with the UCLA-based surgeon who had operated on him years ago, and she ended up heading there for surgery. During a 5-hour session, the surgical team removed her right kidney, right adrenal gland, most of her inferior vena cava, and 7 lymph nodes. However, a checkup some weeks later revealed that the cancer was not only still present but had also spread to her lungs, liver, and nearly all the lymph nodes in her chest.
Laura started seeing another doctor in Las Vegas, who recommended that she take part in the S1500 PAPMET randomized clinical trial organized by the global cancer research community, SWOG Cancer Research Network. After some deliberation, she decided to join the trial, where she ended up taking the targeted therapy drug Cabometyx (cabozantinib).
The side effects of cabozantinib were crippling. But just a year after Laura started taking it, she was found to be in complete remission. Out of 147 patients who joined the trial, she was 1 of only 2 who had had a complete response to their treatment.
Laura continues to be healthy to this day; she undergoes scans every six months, and to date her status continues to be “NED” (no visible evidence of disease). But not only is she enjoying her life once again, she is also now a patient advocate, and actually works with the very doctors who concluded the clinical trial she joined.
Laura is sharing her story with us to show that a Stage 4 diagnosis does not have to be a reason to give up hope; to exhort cancer patients to advocate for themselves as a lifelong responsibility; and to urge them to get to know both their bodies and their disease, in order to be able to make the best possible choices for themselves.
In addition to Laura’s narrative, The Patient Story offers a diverse collection of stories about kidney cancer. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.
Name: Laura E.
Diagnosis:
Genetic condition: hereditary leiomyomatosis and renal cell cancer (HLRCC) (Reed’s Syndrome)
Type 2 metastatic papillary renal cell carcinoma
Staging:
Stage 4
Initial Symptoms:
Profound fatigue
Hypertension
High red blood cell count
Severe back pain
Badly swollen legs
Treatment:
Cabometyx (cabozantinib) assigned under S1500 PAPMET clinical trial
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
I’m not the same person I was before I was diagnosed. There’s no way I could be.
I definitely look at life differently now…
I try my best to live as authentically as possible. Because I know time is a gift.
Introduction
I am 36 years old. I live in Southern California, and I’m originally from outside of Baton Rouge, in the south of Louisiana.
I’m a proud graduate of Louisiana State University, where I got a bachelors and masters from National University. I’ve been working in marketing in the gaming and hospitality industry for over a decade now. Just busy with my family when I’m not at work.
I also like to read and do Zumba and watch global reality TV. I’m actually am part of an all women’s Mardi Gras krewe; I ride in a parade in New Orleans every year and it’s one of my favorite things to do. I just rode earlier this year and I’m already ready for next year.
Pre-Diagnosis
I was having symptoms of my kidney cancer probably two years before I was officially diagnosed.
I had horrible fatigue and was actually going to my car in my lunch breaks to sleep. My blood work was really off. I would go get my blood work done and there would be this one level that I was like, why is it off? And actually had a doctor tell me, oh, if something was really wrong, it would be like hundreds off the charts.
My blood pressure was high, too. I talked to my primary care doctor and she said, well, hypertension runs in your family. And I said, I know, but I’m in my 20s. It’s usually people in their 40s and 50s in my family that have hypertension.
Everyone just kept telling me, lose weight, get more sleep, reduce your stress. And at the time I was working in marketing for a casino corporation that has multiple properties across the country. I was the marketing manager over three of their properties on the strip. And so I thought, okay, well, I probably am stressed.
You know, I was working a lot of hours and, and had a lot of responsibilities. My kids were in middle school at the time or late elementary school. And so I just thought that’s kind of how things were. And then it was about six months before my diagnosis.
Diagnosis: Type 2 metastatic papillary renal cell carcinoma
I went to get another biometric screening done, and they almost called an ambulance because my blood pressure was so high.
So I went to my primary care doctor. But she again said, lose weight, reduce your stress. I ran my blood work and my red blood cell count came back really high, which I later found out is an indicator of kidney cancer. But the doctor said, oh, you probably just had an infection or something.
I felt like a hypochondriac at that point. These are all specialists. These are all doctors. They know what they’re doing, who am I to question it? So that was December.
And then one day in May, ten days before my birthday, I woke up and I just had the most horrific back pain I’ve ever had in my life.
I was honestly struggling to walk. It felt like I was a puppet and someone was just pulling the strings, you know?
And so I went to urgent care because my primary care couldn’t get me in. But it was more of the same. They said, yeah, you probably pulled a muscle here. I was given some muscle relaxers. Of course, they didn’t work.
It progressed to the point that a few days later, for my birthday, we went out to dinner and I couldn’t even put pants on. I had to wear a dress because my legs were really swollen.
So my mom was in town at the time and I didn’t want to freak her out, so I waited until she left town a few days later to go to my primary care. And when I went there, the doctors did more blood work and said, something’s wrong with your kidneys. I’m going to send you for a CT scan. Go get it done within the week.
But I was really feeling that it couldn’t wait. Thankfully I didn’t listen. I went to the ER that very night after work.
The ER doctor diagnosed me with a 13 centimeter tumor on my right kidney and told me I needed to have surgery as soon as possible. He told me to go to a specialty hospital, not to just let any surgeon operate on me, which now that I know so much more about my disease than I did at the time, I realized it’s because it was a very complicated surgery they had to do.
And that was five days after my 29th birthday. I know my outcome would have most likely been very dramatically different had I not gone to the ER that night.
I was also diagnosed with a rare genetic disorder, known as hereditary leiomyomatosis and renal cell cancer (HLRCC), or Reed’s Syndrome.
Reaction to the Diagnosis
It took forever for me to get diagnosed, but once I did, everything lined up into place.
I think I just kind of shut down mentally after the ER doctor said, you have cancer. And I really struggled to process it. I almost felt for a minute there like if I said it out loud, it made it real, you know? I’m a very logical person, but it was hard to process.
I remember we got home from the emergency room, early the next morning because I had been there all night. I had to call my boss. It was a work day; I actually had a presentation that I was supposed to be giving that day. And so I’m thinking, oh my gosh, I have to call my boss and tell him I have cancer. And I actually sat in my chair in my living room and was practicing saying, “I have cancer” before I called him. I was trying to: one, make my experience a reality and, two, keep myself from crying while I’m telling him this. It just felt like a bad dream, honestly. It didn’t even feel real.
And there was about a month between my diagnosis and my surgery, and I was in terrible pain the whole month. You know, I just wanted to sleep and just not think about what was happening. So it took me a while, even after my surgery, to really come to terms with what was happening.
And I remember distinctly after my surgery, I was in ICU for, I think, about five days. And then they moved me to a regular room, and it was there that I finally went, I should probably look at my gown and see my doctors. I hadn’t even done that at that point. I think that was the moment that it really hit me, like, oh my God, my life is never going to be the same again. Like I knew that cognitively. But that was my emotional process. This isn’t just “I have surgery and I’m done with it and I move on with my life.” This is forever going to be something that I am now identifying as a cancer patient and cancer survivor.
It’s frustrating whenever I look back, because I know that at the time of my diagnosis, I had to have had cancer for at least a year, probably two plus. And the idea that had I not been diagnosed at stage four, I could have just had surgery and been done with it, I wouldn’t have reached a point where I’m being diagnosed with a terminal phase of this disease. It’s pretty heartbreaking and it’s really frustrating.
I went back and talked to my primary care doctor a few months after I was diagnosed. Obviously, I’d switched doctors at that point. But I talked to to her and the head of the clinic and I said, look, I know that you will probably never see another case like mine again, but, you know, there’s this phrase with rare cancer patients that they tell doctors at medical school to look for horses when you hear hoofprints, not zebras. And I’m a zebra.
Look, you’re going to go on and treat other patients. And you may never see another case like mine again, statistically speaking, but it doesn’t mean that you don’t have to see other cases that aren’t rare on their own. And I think that we are conditioned a lot of times, especially as women, to just accept diagnoses, if you’re telling me nothing’s wrong, nothing’s wrong, and I’m just going to believe that. But we know our bodies.
I really encourage people to trust their instincts when it comes to their health. You know your body best, you know if something’s wrong with you.
And I really wish I would have just kept listening to that little voice that I had in my head. You know, in my heart that said, Laura, something’s wrong.
I’m glad that I finally did, because that’s what encouraged me to go to the ER that night.
Surgery
The ER doctor told me that he’d already contacted a local urologist in Las Vegas, where I was living at the time, and that the urologist was going to help me get to either USC or UCLA in California for surgery. The ER doctor was very adamant that I needed to go to California for surgery.
I’m now realizing how extensive the tumor was. It’s not just that it’s 13cm, which is very large for a kidney tumor, but it was also blocking my vena cava, which is your main artery that brings your blood back up to your heart from your legs and all. Which is why my legs were so swollen. And so that’s a life threatening condition, which I’m glad I didn’t know at the time because I probably would have just completely shut down at that point.
I realize now that’s why the ER doctor was so insistent that he needed to go to California for surgery. And so the next morning we went to the urologist in Vegas, and he said there was one surgeon in town who may be willing to take your case. Didn’t want that. But he said, if you go to California, I’ll get you in at UCLA.
The doctor added, actually, I was you seven years ago, with kidney cancer. And if you go to UCLA, I will send you to the surgeon who operated on me. And sure enough, he did. He actually walked out of the exam room and called the surgeon on his cell phone and said, I’m sending you a patient from Vegas. And so I got into UCLA.
They did a phenomenal job with my surgery. I was incredibly lucky. I had two amazing surgeons and it was a five and half hour surgery, and they removed my right kidney, my right adrenal gland, most of my inferior vena cava, and seven lymph nodes. And we were hopeful that they’d removed all the cancer. And maybe I would need to do immunotherapy afterwards to keep it from coming back. So that was in June.
Cancer metastasized
But when I had my first scans in August, the cancer was spreading like wildfire.
And so at that point, the cancer was in my lungs and my liver and pretty much all the lymph nodes throughout my chest.
And the doctor at UCLA said, I could put you on this one treatment.
Again, I would just go back to if something doesn’t feel right, listen to your body.
I think even as cancer survivors, we tend to dismiss things sometimes, and so even if you’re in your cancer journey or you’re a survivor, you have to.
It’s advocating for yourself as a lifelong responsibility.
Treatment
Treatment Options
The doctor said, I don’t know if it’s going to work for you. I think you probably should look into clinical trials, but if you do that, you’re going to have to come back and forth a lot. And I know that’s going to be kind of a burden for you to do that. So there’s a doctor in Vegas who is a specialist in kidney cancer, and I would recommend you go see her.
And I was really nervous about switching my care back to Vegas because of the experiences I had before, obviously. I actually had debates with my family and friends on whether I was making the right decision to move my care from UCLA? And I said, you know what? I’m going to go ahead and try it.
And I wound up with the most wonderful oncologist, who, again, was a GU, a kidney cancer specialist named Doctor Vogelzang. And at the first appointment, he sat me down and said, look, here’s what you have. He was the first doctor to explain to me what specific type of kidney cancer I had, answered all my questions, said, I have these treatment options lined up for you. There were all clinical trials because at the time there was no standard of care for the type of kidney cancer I had.
And so he said, here’s the one I think is the best option for you. There were three other ones that he had lined up. And then he said, look, I’ll even do chemo if I have to. Chemo isn’t usually used for kidney cancer patients. But I was so young that he just was like, I’ll do whatever I can to try to give you as much time as we can.
So he explained the first trial and he said it’s four different types of treatments. It’s a randomized trial. I can’t promise you which one that you’ll get. We have no control over that. But there is one treatment on this trial that I think would be your best bet. He said, look, think about it. Let me know what you think in your next appointment, what you want to do.
Decision to Join a Clinical Trial
And I decided to join the clinical trial. The clinical trial that I was on was sponsored by a group called SWOG.
Even now people say to me, oh, that was so brave of you to choose a clinical trial. And I recognize now that it was a brave decision to do a clinical trial. And I’m really proud of my decision to do that. But at the time, it just felt like, what choice do I have? I have terrible choices to make. And, if I make the wrong decision, that’s my life in the balance. That’s how it felt.
I also remember having this conversation with a close friend on my next steps. I said, look, the doctor I met with in Vegas is saying he doesn’t think the treatment that UCLA recommended is going to work for me. And let’s be honest, I’m dying anyway.
So maybe this is a Hail Mary. Maybe this will help me to live a few years. My goal at the time was to see my kids graduate high school. But if not, at least I’ll be doing something that will help other patients at some point. And so that’s why I decided to do the trial.
Cabometyx (cabozantinib)
And I remember when they randomized my treatment. My doctor said, oh my gosh, you hit the jackpot. This is the drug I wanted you in. It was a drug called cabozantinib.
And, at the time, I didn’t know what that was. I thought I was going to be doing immunotherapy, which I’m now embarrassed to admit because I know the differences between the drugs now.
And so I’m like, I can’t believe I thought I was doing immunotherapy because I just didn’t know the difference. It was a targeted therapy drug. And I started it and I was just terrified. And of course, my doctor explained the side effects and I’m going like, wait, what’s going to happen to me?
But again, I was like, what choice do I have? I mean, I can’t die now. I knew at that point that I had no more than a year and I would be lucky if I had another year.
And so I actually pulled my kids out of school for my first day of taking my pills. They needed a mental health day anyway, I’m sure, they had been watching me go through this all summer. And so I brought them to this little hotel outside of Vegas. And they have a really nice pool and all and then I’m sitting here thinking gosh, this is probably dumb. What if I take the first pill and I have this terrible reaction and then my kids are, you know, even more scarred, because mom had to go rushing to the E.R., which thankfully didn’t happen.
Side Effects
The side effects of cabozantinib were rough, to say the least.
What’s hard about being a cancer patient who’s doing one of these newer forms of treatments, like targeted therapy or immunotherapy, is you don’t typically have the same outward side effects that people recognize, whether they think of cancer patients.
I didn’t lose my hair, but it actually turned white. That’s one of the typical side effects from this type of treatment. And that was heartbreaking for me because I’m 29, 30 years old. My hair is going white; even my eyebrows went white. And it’s just all those things that you try to tell yourself, okay, the prize is I live longer and it’s true. It worked for me. I don’t regret it for a second. I would do it all over again in a heartbeat. But, you know, it does a number on you. It changes who you are.
I always say, kidney cancer helped me take the best pictures of myself that I ever took, which is terrible. I mean, I lost an unhealthy amount of weight. Honestly, looking back at pictures now is honestly kind of painful because I go, oh my gosh, I looked sicker than I realized I did
And because you don’t look like people expect a cancer patient to look, when I got back to work and all, they’d go, you’re doing great now, right? And like, no, I threw up three times before I left the house and had to drag myself out of bed because I was so fatigued and also, these targeted therapy drugs actually create a lot of GI issues. You get horrible diarrhea.
I recall standing in the grocery store aisle like about six months into my treatment, trying to pick out what adult diapers I was going to wear. I’m 30 and I’m buying adult diapers. And then I go to check out, I’m thinking, oh my gosh, this woman’s going to know, right? And she probably thought I was buying it for a grandparent or a parent or something.
You get all these side effects like it’s almost shameful to talk about. Your body is crumbling. And, again, it’s things that with traditional treatment you don’t always encounter. And of course, the side effects from traditional treatment are also horrible, too.
… if something isn’t sitting right with you even once you’re diagnosed, you know, if your doctor is telling you, oh, you should do this and something’s just not sitting right, get a second opinion. Get a third opinion if you need to.
You have to feel comfortable with your care.
NED Status
I reached NED within a year of starting Cabometyx, which is, like, insane. Incredibly hard to come across, to say the least.
I had a very rare response where I was 1 of only 2 of the 147 patients who had a complete response to treatment.
I wound up staying on Cabometyx for another about three years, because we just didn’t know what was going to happen after I had that first med scan. And so in 2020, my oncologist said, look, I think the side effects will kill you before the cancer does. Let’s see how you do coming off of it, which was terrifying because at that point it was my security blanket, right?
But I did successfully transition off Cabometyx. I stopped treatment in April of 2020, and now I have scans every six months. And thankfully I have had NED scans ever since. I just had a scan last January: I’m still NED. So I’m really, really fortunate.
And now I’m actually a patient advocate for the GU committee. And so I’m now actually working with the doctors that concluded the trial that I was on that saved my life.
So it’s honestly one of the most meaningful things that I do in my advocacy work, because it’s just a complete full circle.
Knowledge is power in every sense of the word.
You are a better patient if you are knowledgeable about your disease.
Words of Advice
I really encourage people to trust their instincts when it comes to their health. You know your body best, you know if something’s wrong with you. And I really wish I would have just kept listening to that little voice that I had in my head. You know, in my heart that said, Laura, something’s wrong. I’m glad that I finally did, because that’s what encouraged me to go to the ER that night.
Again, I would just go back to if something doesn’t feel right, listen to your body. I think even as cancer survivors, we tend to dismiss things sometimes, and so even if you’re in your cancer journey or you’re a survivor, you have to. It’s advocating for yourself as a lifelong responsibility.
And, you know, I’ve had the unfortunate gift of being not just a patient, but also a caregiver to my mom who passed away five years ago from complications of kidney cancer and lymphoma.
Also, I really encourage you, especially if you’re a younger patient who has a rare cancer, get genetic testing done. I encourage my family members to get genetic testing done, and receive their carrier for it as well.
And I always encourage anyone who has any kind of outliers in their health history that would indicate maybe they could benefit from genetic testing to take the tests. I know it’s scary to have a genetic disorder diagnosed, but I really wish I would have had the opportunity to know I had my disorder before I had cancer.
Knowledge is power in every sense of the word. You are a better patient if you are knowledgeable about your disease, which is what I really try to encourage patients and caregivers to do, to understand their disease.
And also, if something isn’t sitting right with you even once you’re diagnosed, you know, if your doctor is telling you, oh, you should do this and something’s just not sitting right, get a second opinion. Get a third opinion if you need to. You have to feel comfortable with your care. And if you’re not, you know it.
So you’re the best person that’s most knowledgeable about yourself, your body. Honor that in all the ways.
Symptoms: None; found the cancers during CAT scans for internal bleeding due to ulcers Treatment: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled)
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Cancer details: Also known as urothelial (invasive), 5-10% of kidney cancers 1st Symptoms: Blood in urine Treatment: Nephrectomy (surgical removal of kidney and ureter)
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Symptoms: Persistent left flank pain, backache, fatigue, weight loss, traces of blood in urine, fluid in left kidney Treatment: Chemotherapy (gemcitabine & carboplatin)
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Cancer genetics: hereditary leiomyomatosis and renal cell cancer (HLRCC) (Reed’s Syndrome) 1st symptoms: profound fatigue, hypertension, high red blood cell count, severe back pain, badly swollen legs Treatment: Cabometyx (cabozantinib) assigned under S1500 PAPMET clinical trial
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Raquel first noticed symptoms in 2019, like pencil-thin stools, pain, bloating, and blood in her stool. She then started getting full quickly after eating.
When she finally went to the doctor after developing severe pain, she was dismissed and told, “It was just anxiety.” She then ended up in the emergency room and was later diagnosed with stage 4 colorectal cancer, which had spread to her liver, ovaries, and lungs.
In sharing her story, she aims to raise awareness about rising colorectal cancer rates in young people and the importance of listening to your body.
In addition to Raquel’s narrative, The Patient Story offers a diverse collection of colorectal cancer stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Name: Raquel A.
Diagnosis:
Colorectal cancer
Staging:
4
Initial Symptoms:
Frequent bowel movements
Pin-thin stools
Mild red blood in stool
Treatment:
Chemotherapy: oxaliplatin, 5-FU (5-fluorouracil), and irinotecan
I feel so confident that whether I can heal from this or not, I’m going to be able to handle it well. It’ll be okay. I’ve overcome other things in life and I hope that I can be an inspiration to people who are struggling.
I’m 33 years old with terminal colorectal cancer. It has been such a huge part of my life that I have to remind myself that there are other parts outside of that.
I currently work in the tech industry and I’m very blessed to be able to do so.
In my spare time, I like reading and drawing. I’m very artistic and very recently, I’ve been posting more. I’ve been finding great connections on social media with other people who are going through the same thing as me.
I didn’t take my symptoms more seriously because they would come and go.
Pre-diagnosis
Initial Symptoms
I first started noticing symptoms in 2019. I was roommates with my best friend and she started to notice how often I was going to the bathroom. At the time, I was working in restaurant management so I figured I was probably eating too much of the food at work or eating too many processed foods.
I started changing my diet, trying to eat healthier and more protein but also using fiber supplements. I figured I wasn’t eating enough fiber and that’s one of the first things you read online about how to resolve diarrhea or bowel issues. That did help. The symptoms went away, but they would come back to plague me again.
Symptoms Worsened
In 2022, I was working as a contractor in the tech industry. I made really good friends with people on my team. One of them noticed how often I was going to the bathroom and she said, “Raquel, are you okay?” I said, “Yeah, I’m fine. Maybe it’s the dairy in my coffee. Maybe I have a gluten sensitivity.”
At the time, I wasn’t concerned and wrote myself off. I dismissed my symptoms. But knowing what I know now, I was having classic colorectal cancer symptoms.
I experienced frequent bowel movements and pin-thin stools. In addition, any kind of blood in your stool is a huge red flag. It means something is wrong. The color, whether it’s dark or mild red, pinpoints where exactly that bleed is located. Mine was mild red. I didn’t have heavy bleeding, which is why I thought there wasn’t something wrong.
But another classic sign is getting full quickly after eating and that was a huge red flag that something was wrong. That happened from 2022 until when I got diagnosed in May 2023. Every time I took a couple of bites of something, I immediately felt so bloated.
I was actively dieting before my diagnosis, but despite how healthy I was eating, I could not lose weight, which I thought was strange. My stomach was so round and hard. I would later find out that the cause of some of my bloating was ascites. When you have cancer that is as advanced as mine, especially with colorectal cancer, the tumors start secreting free fluid. I had about a gallon of fluid in my stomach that they had to drain. That immediately relieved so many symptoms I was having with eating.
I didn’t take my symptoms more seriously because they would come and go.
They’re not going to think of cancer when they see somebody who visually looks very healthy and young so I don’t necessarily blame her. At the same time, this dismissal of people who are like me is widespread because I know I’m not alone.
Symptoms Dismissed by Primary Care Doctor
It’s important to note that as a millennial—and I have statistically looked into this—half of us don’t have a primary care provider. That was the story of my 20s. I was blessed to land a permanent role in the tech industry where I had good healthcare and was able to schedule my first physical in 10 years back in May of 2023.
When you don’t go to the doctor for that long, there is a lot to talk about. I let my primary care physician know all of my symptoms, especially my bowel symptoms, and that I had severe abdominal pain somewhat recently. It wasn’t in one spot and felt very abnormal.
When I was talking to her about this, I could tell that she thought it was in my head. She scheduled me for a psychiatric appointment after my physical because she thought I had anxiety.
But now that I know so much about my disease, I know that they were classic colorectal cancer symptoms. Because I was so young, a woman, and a minority, statistically speaking, even just one of those categories is going to make you more likely to be dismissed in a medical setting and that is absolutely what I experienced.
It was maybe three weeks after that physical when my cancer was found to be completely metastatic and had spread all over. I know that she probably felt some guilt because, after my diagnosis, they sent the information to my primary care provider before I was assigned to an oncologist.
I’m sure once she saw how bad it was, she felt guilty at the same time. She’s not the only doctor who has done that, especially when you’re young. Medical doctors are taught these statistics of colorectal cancer being an older person’s disease. They’re not going to think of cancer when they see somebody who visually looks very healthy and young so I don’t necessarily blame her. At the same time, this dismissal of people who are like me is widespread because I know I’m not alone.
It wouldn’t be until I had a liver biopsy that they would find the primary source of my cancer, which was colorectal, and I wouldn’t find out until later how incredibly it had advanced.
Diagnosis
Getting the Cancer Diagnosis in the Emergency Room
I finally went to the ER. I remember that day so clearly.
I had severe abdominal pain that was migrating to my lower back and I almost fainted in my apartment. My intuition was saying that something was wrong so I went to the ER.
They did a full blood panel on me, which included the cancer markers CEA, CA 125, and CA 19. Mine were elevated. My CEA alone was in the 700s and anything above 30 is already a sign of cancer activity in your body. For mine to be that high means that my cancer was so advanced.
When I was in the ER, I felt that they took me seriously that’s why my cancer was found. The doctor knew something was wrong so she did that blood panel. I had an MRI, a CT scan, and an ultrasound. They did all those tests immediately.
The ER doctor told me that I had ovarian cancer because that’s where they found it initially. Based on the CT scan, the cancer was pretty advanced in my ovaries and my liver. It wouldn’t be until I had a liver biopsy that they would find the primary source of my cancer, which was colorectal, and I wouldn’t find out until later how incredibly it had advanced.
The metastases are in my colon, ovaries, liver, lungs, peritoneal cavity, and omentum. They found them through those tests within a week.
Everything happened so fast. I feel truly blessed that when I went to the ER, my cancer and the type of cancer was diagnosed so quickly. They ran all these tests, found my cancer, and immediately referred me to an oncologist. The next day, I was talking to an oncologist who then referred me to have a liver biopsy. A couple of days later, they found the primary source of my cancer.
Even though it’s very, very unfortunate how late my cancer was found, what an incredible experience for them to take me so seriously and find out what was going on. Kudos to the hospital that I went to. They took me very seriously.
Reaction to the Diagnosis
I don’t think I reacted like a normal person would have and that’s because I’ve had a lot of things happen in my life. I have a very calm demeanor. When things go wrong, I’m your go-to person to think logically and that’s how I processed my cancer diagnosis.
Even the doctor seemed really surprised that she said, “Raquel, you’re not even crying. I’m so sorry I’m not telling you good news.” I said, “You know what? It’s okay because no matter what happens, I’m going to get through it.”
I feel so confident that whether I can heal from this or not, I’m going to be able to handle it well. It’ll be okay. I’ve overcome other things in life and I hope that I can be an inspiration to people who are struggling. I feel like everything’s going to be okay. I told myself that even at the beginning of my diagnosis.
My liver and lung metastases aren’t responding to chemo, but the metastases in my ovaries and colon are responding moderately well. My oncologist and I are trying to see what combination could help with wherever else my cancer is.
Treatment
The treatment protocol and how they’re going to approach your diagnosis depends on your hospital. When I first got diagnosed, I was at a different hospital but for insurance purposes, I had to switch to a different one.
My treatments would have been a little bit different if I stayed with the first hospital because they wanted to start surgeries right away. They said, “You’re going to have a full hysterectomy. I’m going to be doing this in collaboration with one of our very renowned liver surgeons and we’re going to do this at the same time.”
But then when I switched to a different hospital, they told me, “We’re going to focus on chemotherapy. Let’s see how you react, shrink what we can, and then talk about surgery.” I understand the reasoning for that because they want to shrink as much as they can to lessen things going wrong during surgery or make it a little bit less risky.
Because I ended up switching hospitals, I’ve just been primarily I’ve been chemotherapy.
Being on Chemotherapy for Life
I first started with oxaliplatin. The side effects are not pleasant. It causes neuropathy. Fortunately for me, we stopped that in December. I was on it for six months until the side effects started affecting my quality of life too much.
I have switched to 5-FU (5-fluorouracil) and irinotecan. They introduced irinotecan to see if that’s going to help my liver metastases because so far, I’m having a mixed response to chemotherapy.
My liver and lung metastases aren’t responding to chemo, but the metastases in my ovaries and colon are responding moderately well. My oncologist and I are trying to see what combination could help with wherever else my cancer is.
I have chemotherapy bi-weekly and for Christmas, I pushed back my chemotherapy because I didn’t want to be sick during the holidays. My CEA, one of my cancer markers, jumped when I wasn’t strictly on my bi-weekly regimen. If I ever stopped chemotherapy, decided I didn’t want to continue, or changed my protocol at all, my cancer would jump at that opportunity to be aggressive.
I don’t have a choice as of right now. Chemotherapy is keeping me alive so I’m going to continue being on it bi-weekly. Fifty percent of people who have chemotherapy might need what’s called GRANIX shots.
The white blood cell count gets so low with chemotherapy that medications are needed to boost the white blood cell count to continue treatment. I, unfortunately, fall under that category so not only do I have my chemotherapy, but I have to have those shots to even have chemotherapy because my white blood cells get too low.
I’m very actively looking to find and get second opinions from hospitals that are willing to touch me and get some of this out because I know it would help me in the long run.
Looking for Other Opinions
As of now, they’re telling me that they don’t want to do surgery because of how incredibly advanced my cancer is. They’re saying that it might not be worth it.
However, I’ve read and seen from other people with colorectal cancer that they have better survivability with surgery because the more cancer is in your body, the more opportunities it has to spread and be aggressive.
I’m very actively looking to find and get second opinions from hospitals that are willing to touch me and get some of this out because I know it would help me in the long run. I will be traveling to MD Anderson and Memorial Sloan Kettering, hoping that they can do surgery on me, which will help extend my life. Even though I know it’s risky, I’m willing to do it because the alternative is being on chemo forever.
Getting Help & Support as a Cancer Patient
Having the support of family and friends has been such a huge help and I give so much thanks to the incredible people in my life who have helped me through this.
Some things have personally made it a little bit easier, like trying to buy foods that are pre-cut or pre-chopped. I like getting frozen oatmeal because I can just microwave it.
I’m sicker some days than others and I have found that it helps to have plastic utensils so that I’m not thinking about washing the dishes. To alleviate some of the guilt of buying disposables, I buy the biodegradable kind. You never think about how much something like that would make your life a little bit easier, but it does.
Give yourself grace and find the little things that you deserve to make your life easier.
If I had advocated for myself sooner, my cancer would have been found sooner… Listen to your intuition. You know your body more than anybody else.
Importance of Self-Advocacy
Self-advocacy has been such a big part of my cancer journey because if I had advocated for myself sooner, my cancer would have been found sooner. A lot of people who are as young as me or even younger don’t have a primary care provider.
Maybe they don’t have health insurance and I understand that there is a money barrier to getting treatment for a lot of people. That’s why I’ve been speaking to people who are younger than me and are getting diagnosed with advanced colorectal cancer because of those barriers.
One of the reasons why I started to be so outspoken about my diagnosis is to encourage people to go to the doctor. It’s never normal to have blood in your stool, even if it’s a little bit. Something’s wrong.
Unfortunately, if you’re young, a woman, or a person of color, you have to advocate for yourself so much more than people in different demographics. I hope to inspire people to get the medical help that they need for their symptoms because I was invalidating myself.
I went to my primary care provider and had my physical. I told her all of my digestive issues and bowel symptoms, and she said it was all in my head and that it was anxiety.
Other young people say in the comments on my social media, “This happened to me, too.” That’s one of the reasons why I’m trying to be so outspoken and raise awareness. I want people who have had the same experience to hear my story and say, “I need to take this seriously. Even if a medical professional says that I have nothing to worry about, I need a second opinion. I need to go to a GI specialist.” That is my goal in sharing my story. Don’t let anybody write you off. Get seen. Go to a GI specialist.
All it takes is one who will listen to you and help you. They’re out there. We just have to find them.
Words of Advice
Listen to your intuition. You know your body more than anybody else. A medical professional is diagnosing you based on generalities, but you know yourself better than anybody so if you are having these problems, you deserve to see a specialist and get a second opinion. Don’t listen to the first doctor. Get opinions from a second or a third, especially if your symptoms are persistent.
If your symptoms are persistent and aren’t going away, then something is wrong, especially if you have blood in your stool. That should never be written off. Any kind of blood in your stool is a huge red flag. Pay attention to it.
You deserve to be listened to and taken seriously in a medical setting. If the first doctor isn’t taking you seriously, all it takes is one who will listen to you and help you. They’re out there. We just have to find them.
If you have been invalidated about your bowel health or your symptoms, follow your intuition. As much as we want to completely trust that they have our best interests, that they went to medical school and they’re knowledgeable, that doesn’t mean that they aren’t sometimes wrong and don’t make mistakes or misdiagnoses.
Go out there and fight for yourself. Fight for your health. I hope everybody who hears my story feels very validated to go and seek help.
Interviewed by: Alexis Moberger Edited by: Chris Sanchez
Rachel was diagnosed with Stage 4 Hodgkin lymphoma at age 44. After initial misdiagnosis including eczema and other conditions, her symptoms progressed and her cancer was finally diagnosed correctly. She was initially hesitant to undergo chemotherapy, but upon learning that she would have approximately 6 months to live without it, and after consulting her family and other specialists, she agreed to undergo treatment. She was then put on chemotherapy for 6 months.
Rachel is from Almondsbury in the UK. Having been trained in musical theater, she has taught singing and drama in theater schools and has run her own business teaching singing for the better part of a decade.
Rachel’s cancer is now in remission. She shares her story with us–including her key challenges, frustrations, and struggles, and some important lessons and takeaways–in the hope that other cancer patients can benefit from and be inspired by her experience.
In addition to Rachel’s narrative, The Patient Story offers a diverse collection of Hodgkin lymphoma stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.
I feel really positive. Because I’ve realized that my life was saved for a reason. And that starts with getting my story out there.
Pre-diagnosis
History of Illness
Long before my diagnosis, I was ill for quite a while, and I suspect that I may actually have had cancer even then.
In my 20s and 30s, I was a lot heavier. Over the years, I started to lose weight very gradually and very subtly. Since everybody knows that middle-aged women tend to gain weight as they get older rather than the reverse, this was a bit of a red flag.
I have a son. When I was pregnant with him back then, I was really ill. I had obstetric cholestasis. I found out through research that pregnant women who have obstetric status in pregnancy are at greater risk of developing cancer.
At the time, I also experienced severe nausea and terrible itching on my palms, the soles of my feet, and so on. I was induced and my son was born early because there was a risk of stillbirth. After giving birth, I lost a lot of weight quite quickly—and I do know that a lot of women take a while to regain their shape after giving birth.
Aside from my experience during pregnancy, I was always suffering from diseases like respiratory tract infections—tonsillitis, bronchitis, a whole heap of stuff—one after the other. Whatever was going around, I caught it.
Initial Symptoms
I knew that something was really, really wrong in the spring of 2020.
I developed a rash on my arm and I went to see the doctors. But COVID had just arrived and the doctors had far more interesting things to deal with.
My frustration was mounting because I knew that there was something really, really wrong and no one can get to the bottom of it.
Diagnosis
First Appointments, Misdiagnoses, and Progression
The doctors said it was eczema and I said I didn’t get eczema that way, but they insisted.
The rash went away, but in the spring of 2022, it returned with a vengeance. It was worse than before. The rash was so extreme that I broke the skin several times by scratching and it kept me up at night. Yet they kept saying it was eczema.
I also suffered from dizziness and nosebleeds on various occasions. Dizziness while putting my washing out on the line, staying in the kitchen, and other times; recurring nosebleeds that may have coincided with my menstrual cycle and even took place around the time I miscarried.
One lump turned to 2 then 3 then 4, and before I knew it, my legs were all covered in lumps. My rash had spread to cover the whole of my body save for my face. It was so intensely itchy that I couldn’t sleep and had to keep spreading cooling cream on myself.
The doctor suspected that I had tuberculosis or an autoimmune condition and sent me to have a chest X-ray. I was thinking he was going completely down the wrong path, but at this point, I was absolutely desperate so I agreed.
Getting the Correct Diagnosis
I didn’t think the chest X-ray would reveal anything, but it actually showed a shadow on my lungs.
I was fast-tracked to hematology where I was sent for a CT scan, which revealed that the lymph nodes in my chest and neck were swollen.
A needle biopsy of one of the lymph nodes came back as what they thought was stage 3 Hodgkin’s lymphoma.
Finally, the doctors ordered a full body PET scan, which revealed that what I actually had was stage 4 Hodgkin’s lymphoma and that it had started to creep into the edge of my lungs.
I asked the doctor about chemotherapy. Life had been pretty rubbish up to this point and I was on the fence about whether to take it or not. If I didn’t take the chemo, I asked him how long I had. He said six months.
Treatment
Considerations
I behaved a little bit like a child when I got the diagnosis. I felt completely boxed into a corner like I had no options aside from either chemo or death. What I did know about chemo scared the living daylights out of me.
I didn’t want to lose my hair. I’ve always had really good hair and I’d literally die rather than lose my hair.
There was also fertility. I’m really, really grateful for my son, but I’ve always longed for another child. I’ve suffered two miscarriages. I don’t qualify for egg freezing because in the UK, if you have one child, you’re already a parent and are automatically disqualified from egg freezing.
I talked it through a lot with my husband, my sister-in-law, a psychologist, nutritionist, physiotherapist, and clinical nurse specialists and decided to get on with it, even though my first session on October 4, 2022, very sadly coincided with my parents’ golden wedding anniversary.
I behaved a little bit like a child when I got the diagnosis. I felt completely boxed into a corner, like I had no options aside from either chemo or death.
ABVD Chemotherapy and Medicines
My chemotherapy was a cycle made up of two lots of infusions.
My treatment took place every two weeks. I would go in and have these IV medicines put in my PICC line then I would have my chemo on the same day as well. My first chemo session was made up of the PICC line going in and my first lot of chemo.
My sessions were once every two weeks for six months. Every other week, I would have a pre-chemo appointment to make sure that I was well enough to undergo treatment.
By the way, it wasn’t just IV drugs. Every day I had to take medicine at home as well. I used to load my pill box and take pills at home: steroids, dexamethasone, and then antivirals, acyclovir.
Side Effects of Chemotherapy
I had loads of side effects. The doctor said I had pretty much every side effect under the sun.
The first time was the worst, definitely. I started feeling unwell in the chemo chair. When I got home, it knocked me out. For days afterward, my self-care went downhill. I didn’t have enough energy to do anything apart from go to the toilet and brush my teeth—and even that felt like climbing a mountain.
I felt very, very cold when the chemo went in. My whole body was really, really cold. I immediately started bloating like a balloon. I could feel my stomach swelling when the IV drugs were going in. I also immediately started feeling quite nauseous.
I would come home after treatment, change into my pajamas, and get into bed feeling very nauseous and very bloated. I’d have a lot of stomach pain, and I’d lie there and wait for it to ease off and get a little bit better.
I’d have a lot of little pain in my legs, like a burning sensation, from fatigue. My legs would sort of give way on me. I literally felt like, How on earth am I going to get to bed? The fatigue was just insane.
I’d wake up in the morning and feel really thirsty straight away. I suffered from hemorrhoids, constipation, ulcers, cuts, and angular colitis. Cuts at the corner of my mouth. The hemorrhoid pain was absolutely the worst.
All that being said, I’d never been hospitalized or even had a temperature.
Dealing With the Side Effects
Soup, fresh air, and hugs helped with the side effects. Basically, distracting myself, like with things to watch. A lot of comfort-watching—whatever made me feel good. Whatever was funny, lighthearted, or anything familiar.
It was literally pure survival mode, anything just to get me through.
Remission
Apart from the side effects, everything went amazingly well in terms of progress.
Two cycles in, I had a PET scan that showed that I’d had a complete metabolic response. The doctors said, “We couldn’t ask for better than that.”
Everything in me wanted to stop. Surely I’m cured. But they said it doesn’t really work that way so I had to undergo about four more months of chemo.
Eventually, at the end of the chemotherapy, about six weeks after it stopped, I had another PET scan that showed that I’d had a complete response.
All the scans after chemo showed the best possible results.
Hang in there. Be patient because your emotions do catch up. Just give them time.
Processing the News
When I was told I had the all-clear, I didn’t feel a single emotion. I didn’t feel shocked, sad, confused—not even happy. It wasn’t as if I’d reached the pot of gold at the end of the rainbow.
I think it was like that for different reasons. My life had been a struggle before I was a cancer patient and now that my cancer’s been dealt with, all my concerns were still there. I had to step back into it and continue with it.
Eventually, I felt really bad and guilty about this because there are people out there who want to live. I felt guilty that I didn’t feel happy.
The lady I spoke with was ever so kind. She said, “You’re perfectly within your rights to feel exactly what you’re feeling. No judgment. No guilt. Whatever you’re feeling, even if you’re feeling nothing, that’s completely okay.” It was really lovely to connect with someone and hear those words.
I also found that having access to mental health services was absolutely necessary in terms of processing and moving forward. I had access to a psychologist through the UK National Health System. We determined that not everything that I talked about was related to cancer.
There were things we worked through that were issues before I had cancer, as well as those that will happen in the future. Honestly, I don’t think that my mental health would be in a good state right now if I hadn’t had access to a mental health professional.
Now, I feel really positive. Because I’ve realized that my life was saved for a reason. And that starts with getting my story out there.
Although initially, I wanted to look into medical negligence. I do believe my cancer could have been found years earlier with all my recurrent illnesses. I made a formal complaint in terms of the very late diagnosis of my cancer. I do plan to tell my story as well as complain. Now the complaint’s been dealt with.
Cancer is a life-changing experience. I’ve heard it said that if you have cancer, you’re never the same person you were before.
I think that if you have cancer and you’re still here to tell the tale, you’re still here for a reason.
Realizations and Takeaways
To cancer patients and caregivers who may also be feeling numb like I did, I’d say, hang in there. Be patient because your emotions do catch up. Just give them time.
I also want to say that my faith helped me. I’m a Christian and I feel that it’s as if God had His hand over the cancer, hovering over the edge of my lungs, and caught it before it could enter a major organ. Now I can say that it was not my time to go, even though I felt it had been my time for a long time.
Your body is incredibly clever at telling you that something is wrong. I knew the rash was not eczema. I knew something was really out of balance and I shouldn’t leave it alone. If I had left it alone, I wouldn’t be here today.
I kept going back to the doctor because intuitively, I knew something was wrong. I think the body tells you before the brain does, and the brain catches up. It’s just that we don’t really stop to listen.
Cancer is a life-changing experience. I’ve heard it said that if you have cancer, you’re never the same person you were before. I feel like I had a near-death experience insofar as if my cancer hadn’t been found, I would have died. I think that if you have cancer and you’re still here to tell the tale, you’re still here for a reason.
It’s a chance to regroup, to really look at your values, what’s important to you, and what you want your future to look like, considering you nearly didn’t have a future. What is really important and what isn’t so important: family, life, work, and faith.
Cancer details: Most common and most treatable form of Hodgkin lymphoma 1st Symptoms: Shortness of breath Treatment: 3 rounds (6 infusions) of ABVD chemo
Cancer details: Diagnosed at age 25 1st Symptoms: Swollen lump on right side of neck/chest area, continued to grow Treatment: ABVD chemotherapy (3 cycles = 6 infusions)
Shortly after gallbladder removal, Keith developed what felt like gallbladder pain. His wife encouraged him to go to the ER where he received a CT scan that revealed a mass in his colon. After removing the mass and some lymph nodes, a biopsy showed Keith had stage 4 colorectal cancer.
As a husband and a father of two boys, Keith discusses the impact his diagnosis has had on his outlook and life and how he stopped working to prioritize time spent with his sons.
Now on his third line of treatment, Keith discusses cancer support groups, chemotherapy, treatment side effects, mental health, how he is considering a double lung transplant, the importance of being a patient advocate, and his advice for others on their own cancer journeys.
I’m Keith. I’m 43 years old. My hobby is that I love to be outside kayaking, hiking, and walking. I’m a Corvette enthusiast who’s working on my car and hanging out with my dogs. Those are usually the 2 that hang out with me while my kids are at school and one might poke his head in. He’s a very large Great Dane. My wife, kids, and I like to travel. We like to do a lot of international travel and domestic as well.
When did your symptoms first occur?
Early in the year 2021, I had my gallbladder removed. Then in May, I started to have abdominal pain again, very similar to when I had gallbladder issues.
I was coaching Little League baseball the night of May 4th, 2021. As the night progressed, the abdominal pain continued to get a little worse, so much so that my wife forced me to the hospital in the middle of the night.
Getting emergency surgery
I went to the emergency room, and they did a quick CT scan and found a mass in my colon. They did a couple of other tests like blood work and stuff, and they said that they were going to be prepping me for emergency surgery because they wanted to get that mass out.
As they did more digging and research, they also found several lymph nodes that were impacted as well as 4 lesions on my liver at that time. So that’s a whirlwind of how we got started.
I went through that emergency surgery that night and was in the hospital for about 11 days. A couple of days after my surgery, I became septic so I had a lot of issues health-wise. We weren’t sure how that was going to play out, but I was actually able to make it out of the hospital the day before my wedding anniversary, which was nice. I started chemo shortly thereafter.
I went to the emergency room, and they did a quick CT scan and found a mass in my colon.
Did you have other symptoms besides abdominal pain?
No, nothing. Even what would have been 6 months before that, I did a triathlon. No issues. I’m not necessarily saying I’m the most healthy person in the world, but I definitely didn’t consider myself unhealthy by any stretch of the imagination.
What did doctors say about your minimal symptoms?
I was told that 41 was very young to be diagnosed with this. They mentioned that they’re seeing more and more of this in younger patients being diagnosed very late stage. Some of the traditional symptoms are rectal bleeding and abdominal discomfort. But for me, I really didn’t have any of that, other than the gallbladder pain that came back.
I thought it was strange because you shouldn’t have pain in an organ that was removed. I thought initially it was maybe some type of surgery complication that turned out to not be a surgery complication at all. It was a whole other issue.
I was told that 41 was very young to be diagnosed with this. They mentioned that they’re seeing more and more of this in younger patients being diagnosed very late stage.
It was tough. I went to the hospital during COVID times, so nobody else could come with me. I went by myself. I was in the emergency room by myself and had to make a call to my wife that they found a mass. Even at that point, I still really didn’t comprehend or grasp what the situation was. I was thinking, okay, they found something, they got to get it out and then I can go home and move on with life. That wasn’t the case.
It was very shocking initially and I was almost numb. It wasn’t until after the surgery when I started to recover in the hospital that my situation and the diagnosis became real.
The more doctors that I spoke to while I was in the hospital didn’t necessarily paint a real great picture of the survivability, how long I would be around, and all those things. Luckily, I have a great oncologist I met several weeks after all that, which helped put things into perspective a little bit, and while obviously still serious, there’s at least hope.
I still really didn’t comprehend or grasp what the situation was. I was thinking, okay, they found something, they got to get it out and then I can go home and move on with life. That wasn’t the case.
What cancer treatment options were you given?
After surgery recovery, I met with my oncologist about 4 weeks after my initial diagnosis and surgery. We walked through traditional first-line chemotherapy FOLFOX, which is a pretty aggressive first-line treatment and pretty standard care for most of these patients. We did add Avastin into the mix as well to hit it harder, which is probably the best way to describe it.
We talked through side effects and what to expect over these 6 months. The intent was curative intent and to get me to a position where I could be surgical in regards to the liver situation.
Undergoing liver surgery and chemo
We went through 4 months of FOLFOX before I was able to have my liver surgery. They did a liver resection in October of 2021 and took out about 30% of my liver. The good news is most of the lesions that were in the liver were necrotic. Chemotherapy, knock on wood, had done its job, and then I recovered from that surgery.
They did ask me to complete 4 additional rounds of clean-up chemo just to make sure there wasn’t anything lingering out there that didn’t show up on scans. I left the hospital in October extremely excited. You get this diagnosis 4 months before and it’s a pretty dark picture, and to be told that we got it all? In my mind, I beat it and we’re moving on with life. We can go back to normal.
About 2 months after that, a follow-up CT scan showed numerous spots in my lungs. It had hid for a little while and then metastasized further into the lungs which we’re still working on treating today.
About 2 months after that, a follow-up CT scan showed numerous spots in my lungs. It had hid for a little while and then metastasized further into the lungs which we’re still working on treating today.
Of all the chemo that I’ve been on, that first-line treatment was pretty rough. FOLFOX is not for the faint of heart. I had a lot of fatigue and nausea. At one point, I did have a blood clot that they deemed Avastin probably caused. That was a little scary. I had a blood clot that started in my leg and moved into my lungs. We were able to work through that and get that resolved.
Mental Health
The physical and mental toll of cancer
I did seek out some professional help from a therapist’s standpoint, and that helped me tremendously.
I looked at it as 2 things. There’s the physical piece – there’s a lot of medications and vitamin supplements and things like that I was taking to help. But I think the first year of this was more challenging on the mental side if I’m being honest. It was pretty dark for a while because the first thing most people do is grab their cell phone and computer and start searching for your disease and they want to learn more about it.
The prognosis for stage 4 colon cancer patients is not really great. I’ve got 2 young boys and my wife, we have a great family. To think about losing all that in a very short window is very humbling. I went through a pretty dark depression phase where I lost hope. This was before treatment really started and things started to actually show some progress.
I did seek out some professional help from a therapist’s standpoint, and that helped me tremendously. Not only to be able to take the feelings that I’m having at different points throughout the day or the week or whatever and work through and process those but to get me centered and present instead of sheltering away.
Breaking the stigma of men expressing their emotions
I think that the traditional model of men don’t cry, keep your feelings in, walk it off, and rub some dirt on it is just culture. My wife and I had a lot of conversations about depression and the diagnosis. It’s great to be able to talk to friends and family, but there’s a note that a professional can bring to those conversations that friends and family can’t.
Friends and family will tell you, “You got this, you’re going to be okay, we’re going to get through all those things,” and it’s all with good intentions. But the professional side will actually take you through how to deal with the dark stuff, how to work through those feelings, how to deal with anxiety, and how to deal with depression so you can actually enjoy life instead of just living secluded and isolated.
I did find a couple of groups shortly after my diagnosis that really helped me with peer-to-peer, patient-to-patient, sharing stories, hope, avoiding isolation, and being able to talk to people who truly understood what I was going through.
Talking to children about a cancer diagnosis
Honestly, as a father, that was the hardest conversation I’ve ever had. My wife and I talked a lot about this before and what approach we wanted to take. At the time, 2.5 years ago, they would have been 9 and 11. You think 9 and 11-year-olds are pretty young, but kids are smart, especially with technology at their fingertips. They’re able to find the answers if you don’t provide them, so we made the decision that we were going to be age-appropriate, open, and honest with my diagnosis, my condition, and how life is going to look for a while.
I look back on that and I’m really glad we made that decision because I’ve met other folks that are going through similar things that chose a different option. Every family is different and everybody’s decision on how they include their family in these conversations is something very personal. But I’ve also seen a lot of family and friends be torn apart simply because they felt things were hidden from them.
We made the decision that we were going to be age-appropriate, open, and honest with my diagnosis, my condition, and how life is going to look for a while.
I wanted that to be the voice, I wanted them to feel like they’re a part of this story and what we’re going through, and not dismissed. Even 2.5 years into this, I still double down and think that was the right decision for us.
As for my parents and in-laws, we needed a lot of help right in the beginning. This was right at the beginning of summer break when all this happened. My kids are extremely active in sports and activities. Being out of the mix for a while, recovering from surgery, we needed a lot of help shuttling kids here and there and just dealing with life. It doesn’t stop just because somebody gets sick.
We were able to have a lot of conversations and tough conversations, but at the same time, as family does, there’s a lot of hope, positivity, and support that comes with those conversations.
Metastasis
Blood work is pretty traditional and then we also used ctDNA testing to monitor residual disease and that’s actually what gave us the smoke alarm…It posted positive.
How long after your diagnosis did you learn your cancer metastasized?
About 2 months. It would have been January or February 2022 till March or April that I didn’t have residual disease and nothing showed up on the scans. Then we started using a couple of different tools to monitor my disease. Blood work is pretty traditional and then we also used ctDNA testing to monitor residual disease and that’s actually what gave us the smoke alarm. It was a test called Signatera, which is a molecular test for ctDNA. It posted positive.
How did you react to your cancer recurrence?
It sparked a flurry of emotions and feelings that it’s back. Because of that positive test, my medical team ordered scans and so forth. At first, nothing showed up, so we were at this weird place where we knew something was there. We know something’s brewing, but we just can’t see it and we don’t know where it is.
What treatment did you opt for with your recurrence?
I’m really lucky in regard to the medical team that I have. My oncologist and I walked through different options. We could do nothing and wait to see what pops up and deal with it then. Or, what is not very common, is my oncologist actually offered me to go ahead and start back on treatment again knowing that something’s there, it’s going to show up, we just don’t know when. While chemotherapy is not fun, we opted to go ahead and start treatment to be as aggressive as we possibly could. About a month after that, they did a follow-up CT and then found 14 spots on both sides of my lungs.
Not knowing where the recurrence was at first, was chemotherapy the right choice?
I think if anything, it bought me time to process and plan with my team what approach we wanted to take. The treatment that I started then would have been the treatment that I would have started if we waited regardless. I know there’s no real way of knowing, but in my heart, I believe it probably saved it from popping up in other places as well. While 14 spots in your lungs are not great, it could have been worse. I think that some of those tools that we’ve used put us in a position to get ahead of it to try to treat it the best we could.
What chemo were you on post-recurrence?
I know there’s no real way of knowing, but in my heart, I believe it probably saved it from popping up in other places as well.
My second line treatment was called XELIRI, which is Xeloda Irinotecan, and then we kept Avastin in the mix as well. I was on that cocktail for about a year and a half.
There were side effects, so still some fatigue and some nausea, but the ability to bounce back was so much faster. When I was on my first-line treatment with Folfox, after that infusion, I would be out of commission for 4 or 5 days in a row and miserable. The worst flu possible is the best way to describe it.
Then when I moved to the second-line treatment, the day after infusion was pretty rough. Then you started to come out of it pretty quickly and that cycle was every 3 weeks. I actually got an extra week of good feeling into that mix too. While again, no chemo is great, it definitely was good from a quality-of-life perspective.
Staying on a curative path
We had that tougher conversation around curative intent versus palliative care, and I’m still on a curative path. I’m not ready to succumb to this is going to be my life forever. I know that seems kind of silly at times, but I think for me mentally, I need to know that curative is still a path.
I’ve also learned I have to accept stability as positive.
Hearing that was obviously frustrating, it was discouraging. But I feel like we were in the right place to get started when we did. As I said, that cocktail worked for about a year and a half.
What we started to see, and this was just a couple of months ago was that some of those numbers like my Signatera test started to increase, but my scans still showed stability. Again, maybe I’m an oddball, but we’re in this weird situation where we know the chemo that I’m on wasn’t reducing anymore, but it was keeping things stable. I’ve also learned I have to accept stability as positive.
But we had that conversation around if this drug is no longer shrinking but is holding it stable, is it best to stay on this until it stops working altogether or do we want to go ahead and fast forward a little bit and jump on third-line treatment? The path that we’ve always taken is the most aggressive path and the best probable outcome. We made the decision to go ahead and jump ship and start third-line treatment, which started about a month and a half ago.
What cancer treatment are you on currently?
The third line for me is Vectibix, which is an EGFR inhibitor along with Irinotecan. So one of the old drugs and one of the new drugs and that’s where this lovely rash comes from, is from the Vectibix.
How long will you be on your current treatment?
The good news is that I have found options post this line of treatment. Exiting standard of care, there are a couple of clinical trials that I’ve already looked into and tentatively been approved for.
Until it stops working. I love being the oddball. All the spots in my lungs are very small and they’re all under a centimeter. So for me to get into any clinical trials, I don’t qualify because they’re not big enough to biopsy. I’m in that weird situation of, you almost want it to grow to be able to qualify for trials and things like that. But mentally, I just can’t accept that. I’m just going to continue to beat it down until I can’t beat it down anymore, so it’s indefinite right now.
The good news is that I have found options post this line of treatment. Exiting standard of care, there are a couple of clinical trials that I’ve already looked into and tentatively been approved for. It’s a pretty aggressive opportunity that’s being tested in an NCI center close to me, it’s a double lung transplant for metastatic cancer patients. That tumor board has already approved me, but I have to exhaust the traditional standard of care, which is the current treatment that I’m on now.
Reflections
There are plenty more options out there as long as you’re willing to do the research and find them and go wherever it takes to get whatever that treatment may be.
I don’t want to take anything away from my team because they are great, but at the same time, there’s a realization that you’re not their only patient. They’re not going to invest 40 hours a week looking into different options for you.
I’ve learned a lot through a couple of advocacy groups that I’m a part of that have really helped me understand the value of second opinions. For me, second, third, fourth, fifth, sixth, and seventh opinions. I’ve traveled quite a bit to get a better understanding of options that are out there and things that are at different cancer centers I can’t get locally. That has helped me open up some doors and continue to build that hope strategy around, there’s something else after this instead of just saying, this is the last standard of care line. This is it.
There are plenty more options out there as long as you’re willing to do the research and find them and go wherever it takes to get whatever that treatment may be.
Doing your own research to understand your options
I think a big misunderstanding, and it is not the fault of your local oncologists and teams, I think it’s just how the systems are built. You have to be a component of your care and you have to be an advocate of your care. That also comes with education. I had this misunderstanding that I would just go to my oncologist and they would take care of everything and they would prescribe, “Here’s what you need to do to get rid of X, Y, and Z,” and then things would be great.
I can’t stress enough, exhaust your options in regard to opinions. There are never too many opinions and too many places to visit to get ideas.
There are limitations to every cancer center that’s out there. Some specialize in the cancer you have and some don’t. For me, knowing that I’m not going to get a list of trials that are across the United States for me to look into. They provide some that they’re familiar with, but ultimately, a lot of that research lies on the patient along with opinions. I can’t stress enough, exhaust your options in regard to opinions. There are never too many opinions and too many places to visit to get ideas.
How often are your scans?
Because I’m still on active treatment, I see my local team every 2 weeks and we complete scans every 3 months. My next scan will probably be at the end of September. That’ll be the first true telltale sign of how this new line is actually working. My hope is it can get me to a point where surgery would be an option from a lung standpoint, but it’s got to do some good work.
I will say that the positive is that, I just had my third, but after 2 rounds of this, one of the tumor markers in my blood is the second lowest it’s ever been. I’m hoping that correlates in September to good news on a scan, but we’ll see when we get there.
Do you experience scanxiety?
Let yourself be surprised when there’s good news and actually enjoy that.
It was a lot worse in the beginning than it is now, but don’t get me wrong, there’s still scanxiety. I think My Chart is a blessing and a curse at times because you have access to those scans as soon as they’re available. Sometimes I see them before my oncologist. When it’s a good scan, that’s great, because then you can high 5 and move on about the day. It’s when it’s not that the panic sets in – do I need to call, when are they going to see it, what’s our next step?
How I’ve learned to deal with it is you just have to accept it. That sounds really weird, but you have to accept the situation you’re in. You’re going to get good news and you’re going to get bad news, and more than likely, you’re going to get bad news more than good news. With that mindset, you’re not expecting to go in and everything’s going to be great and the scans are going to be clear.
Don’t set yourself up for something that’s not realistic. It helps a ton. Let yourself be surprised when there’s good news and actually enjoy that. When it’s not, learning how to process that, going back to see a professional that can help with tools and tips and tricks to work through some of those things has helped me post-scan to be able to control some of those things.
Do you still work?
I stopped working after my diagnosis. We were lucky enough to be in a situation where I could step away from work and we could live our lives as normally as we had. I know that is not the situation for a lot of folks, so I don’t take that lightly.
What it has allowed me to do is spend my time how I want to spend it and prioritize my time differently than I did in the past. I think with a lot of folks, work is always this big rock that you always have to spend time on. Then, you get home and you got kid’s activities and all these different things. It just consumes the day. With me not having to work, I’ve been able to spend time with my kids that I never would have had the ability to do.
One of the things that I’m most grateful for is the last 2 summers, our kids would go to some type of camp or care when I was working. But since I’ve been home, we didn’t have to do that. I was able to stay with the boys both summers and they coined the term Summer of Dad. What they would do is they would take a plain old calendar, and just start filling it with all these activities that they would want to do throughout the summer break. My job was to find ways to get all those things to happen over the course of 65 days or 80 days or whatever it is.
It has been so much fun and so rewarding to spend that time with my kids. My phone’s not ringing. I don’t have to worry about email. I don’t have to worry about the grind of a traditional job. I’m able to spend my time how I want.
Which cancer support groups do you recommend?
I would be remiss if I didn’t mention a couple of groups that helped me tremendously through this diagnosis. One of those is colon cancer-specific. It’s a group called ColonTown, a nonprofit organization that focuses on patient and caregiver-led support, education, and being able to, share stories and speak to people who are going through things that you’re actually going through.
The other group would be Man Up To Cancer. This is an all-cancer type group, but specifically for men. We touched a little bit earlier on that stigma of male mental health, isolation, and those types of things. That group is phenomenal at helping solve that gap and really providing support and help for men specifically to not isolate during these times and how critical it is to not do that.
As a cancer patient being able to find the people who are going through this with you, it’s amazing. The connections you can make with people, whether it be online or in-person, that are going through things. It’s almost a bond that’s stronger than any relationship I’ve had with people I’ve known for years. I don’t know if it’s a trauma response or what it is, but it’s interesting to be able to surround yourself with like-minded people in similar situations. You just feel that weight gets taken off your shoulders to some extent when you can share and know that people get it.
What advice do you have for others on a cancer journey?
Don’t give up hope, number one. Absolutely educate yourself on your disease and be an advocate for yourself along with your care team. Be a part of those conversations. Don’t just let those conversations be done to you and take your life back.
To say I’m not scared of death is an extreme understatement. I’m actually terrified of that, but can’t control when that’s going to happen. It’s all in science’s hands at this point. What I don’t want to do if I get to that point, is look back and say I’ve wasted the last year, 2 years, 3 years, whatever that is, worrying and not living my life. That will be my biggest regret as a father, a husband, and just as a human.
Everybody has a stopwatch above their head, and some might be shorter than others, but I’m going to maximize every day I can and I’m going to do whatever I can to enjoy it, whether that be enjoying my own hobbies or spending time with my friends and family. I’m not going to let it take that part of my life away.
Symptoms: Found the cancer as a result of family history & early colonoscopy; discovered Lynch Syndrome after genetic testing Treatment: Partial colectomy
Danielle’s Stage 1 Classical Hodgkin’s Lymphoma Story
Interviewed by:
Alexis Moberger
Being a health-focused family, Danielle and her family were shocked to discover Danielle’s mother had a rare blood cancer known as myelofibrosis. To get a stem cell transplant, her mother needed a donor, and tests showed Danielle was a good match. Danielle needed an x-ray to confirm she was healthy enough to be a donor. The x-ray revealed a large tumor in her chest, catalyzing her own journey with cancer. She was diagnosed with stage 1 classical Hodgkin’s lymphoma.
After landing her dream and preparing to step into a new career, at 25, Danielle wasn’t ready to be held back from beginning her life. Still, she found herself adjusting plans to account for various cancer treatments, resulting side effects, and a cancer recurrence.
A month in remission, Danielle shares her cancer story with us including her experience with chemo, fertility preservation, and a bone marrow transplant, her plans of turning her journals into a book, her outlook on being diagnosed with Hodgkin’s lymphoma twice, and her advice to those on their own cancer journeys.
I feel like even when you’re struggling, you can reach for the stars and find meaning in your suffering, never give up hope, and always choose love over fear.
Danielle D.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
I’m Danielle Draper. I’m 26 years old. I was born and raised in Annapolis, Maryland but I’ve been living and working in Washington, D.C. for the last four-ish years. I really like politics and government affairs.
For fun, I love hanging out with a really large friend group and normal mid-twenties activities. Going out to concerts. I’m really adventurous, I love to travel, and I love yoga. I really want to be a yoga teacher. I grew up doing dance my whole life. I’m really into health, fitness, exercising, and eating healthy. My family and I have always been really into integrative health.
Where did your cancer journey begin?
She had a rare blood cancer called myelofibrosis, which is a malignant bone marrow disorder. She was diagnosed with cancer.
My story is extremely unique in that my mom started feeling really itchy and would bruise easily, but she was just going to her normal physical doctor’s appointment and she got her blood drawn as usual. She’s a super healthy person, and all of a sudden, her platelet count was extremely low.
She bounced around a few doctors, then finally, one doctor was like, “I think you should get a bone marrow biopsy.” That confirmed that she had a rare blood cancer called myelofibrosis, which is a malignant bone marrow disorder. She was diagnosed with cancer.
The “C” word was never in our vocabulary. My family is so healthy, so that was such a shock for my family. Especially when the doctor told my mom, “You’re going to have to get a stem cell transplant.” We’ve never heard that word, so we were like, all right, what is the stem cell transplant? It’s a very intense procedure where they would replace her unhealthy blood cells with healthy cells using a donor. Most hospitals try to get a family member to be their donor because they’re most likely a good match. They requested that I get tested because I’m her daughter. I’m also young and healthy.
Preparing to donate stem cells for a transplant
We got tested and I found out I was a pretty good match. We started the approval process right away. There were a lot of questionnaires, I was going to get a lot of blood tests and everything was getting approved and was looking really good. At this point, we had told all our family and friends this is what’s happening. We gathered such a huge support system. Everyone was encouraging me and my mom that our family was going to get through this.
Now we’re about 3 weeks away from my mom’s transplant, everything’s going in order, and the date had been decided. A few weeks before, they had to do final approval tests which included a physical exam by the donor because they wanted to make sure that the donor was perfectly healthy.
I went to the hospital and I did an EKG, a blood test, a physical exam, and a chest x-ray. I definitely wasn’t worried. I rarely went to the doctor for anything at that point in my life. I didn’t even have a primary care doctor, just my pediatrician from my childhood. I went in with a very positive attitude, I felt fine that day, everything was looking good and I was just bouncing around.
A chest x-ray led to a surprise discovery
The doctor walked in and she asked me to sit down and she was like, “We found a tumor in your chest near your heart.”
I got the chest x-ray and the nurse said, “Oh, don’t worry, we’ve never had a donor have a problem.” Those were famous last words. I was waiting in the hospital room for over an hour, like, wow, these results for the chest x-ray are taking a really long time. I still didn’t think anything of it. I just thought hospitals were slow.
Then the doctor walked in and she asked me to sit down and she was like, “We found a tumor in your chest near your heart.” They were just as surprised as I was. Everyone was like, wait, what? She said, “Have you been losing weight?” I said, “Actually, I have been losing weight a little bit.” But I had started really exercising that fall, I’d been eating healthy. I thought it was just me making better, healthy choices in my life. She said, “If you’re losing weight, that’s obviously not a very good sign.”
Did you have any symptoms?
This is definitely a unique situation where I felt fine, but there was a mass the size of my fist near my heart. I didn’t know anything about oncology or anything. My mom went to her doctor and was like, “This is what’s happening.” Then my doctor sent me to one of the best oncologists in Annapolis. I feel really blessed. It was almost like a recommendation by word of mouth.
Getting a biopsy and diagnosis
He said it was classical Hodgkin’s lymphoma.
We went to the oncologist and he took some blood labs and already things were not looking very good because Hodgkin’s lymphoma has certain markers and tests you can do. Those weren’t very good. He asked to get a biopsy right after Christmas.
I tried to have a normal Christmas. December 27th at 5:00 in the morning, I had the biopsy and I think my oncologist pulled a few strings to rush the results, but we got the results the next day. He said it was classical Hodgkin’s lymphoma, one of the most common cancers in people in their 20s. That terrible day of that chest x-ray was December 18th and then I was diagnosed December 28th, so in about 10 days I went from living a completely normal life to having cancer.
It was so shocking. I don’t even know how to describe it. It was definitely the worst moment of my life. I literally thought I was going to die the next day. I was like, I have a month to live.
When I got that chest x-ray, my mom was traveling. She’s a flight attendant, and I called her because she had known that I was getting my approval test, so she was anxious to hear how it all went. At that point, everything was being approved. I called her and she was like, “Hi, honey, I’m about to take off.” She was traveling to Rome and she said, “Is everything all right? How did the test go?” I was like, I can’t tell her. I can’t ruin her trip, so I just lied and said, “Everything’s fine. I’ll see you when you get home.”
Then I had to sit her down and I was like, “I can’t be your donor anymore.” She was like, “What? Why?” I said, “There’s a tumor in my chest.” It was probably the worst look on her face I’ve ever seen. I’ll definitely never forget that moment. It all happened so fast. It was so unbelievable.
A week before that, I had just gotten my dream job. I had been applying for 5 months, working the full-time grind of sending out resumes and cover letters and interviewing, and on December 10th, landed my dream job. I’m over the moon at that point. I had just moved into a brand new apartment with my boyfriend. I thought I was entering a new phase of my life.
That was my main concern, which is weird. It should have been will I die or not, but I was like, I want to start this job…When you’re 25 and just starting to enter the workforce, you don’t want to be held back.
Then when I got diagnosed, I think my first concern, which sounds silly, was I better not lose this new job because it’s something I’ve worked so hard on. That was my first question to my oncologist, can I keep working? Can I start this job? He was like, “If you think you can do it, I encourage you to do it.” That was my main concern, which is weird. It should have been will I die or not, but I was like, I want to start this job.
When you’re 25 and just starting to enter the workforce, you don’t want to be held back. But we were all really surprised. We barely told anyone because everyone was so worried about my mom. It was just so surreal that we didn’t want to tell anyone about what was going on with me because it was too much to handle.
Beginning cancer treatment
Once I was diagnosed, 2 weeks later, [my doctor] was like, “Let’s get you started ASAP.” We did talk about fertility preservation. My oncologist’s niece was a fertility specialist. I guess they knew that I didn’t need as much treatment as someone who had stage 4 Hodgkin’s lymphoma. We decided to just push on. I really trusted him and his niece. They were like, “We believe you’re going to be fine.” I was like, okay, I trust you.
I needed to get a port in, which I still have, and we started chemotherapy in the middle of January.
Did you opt for fertility preservation?
It was so blurry because everything was moving so fast. When he was reading the list of side effects, which is pages and pages of side effects, fertility came up, which for a young person, is such an important part of your life. Me and my mom were like, “Do you think we should do this?” And he was like, “It’s really up to you. A lot of women do, but a lot of women don’t. I personally think you’re going to be fine.” He was very correct, I was fine.
I did, which is totally standard for Hodgkin’s lymphoma. I did 8 rounds. The standard is usually 12, but I did 8. It was terrible. I read somewhere that ABVD is one of the hardest regimens there is in chemotherapy. It is just so brutal. It’s this wave of toxic poison rushing throughout your body. I feel like a lot of cancer survivors talk about when you’re in that fight or flight. You’re so zoned in on making it through that. I made it through it. I slept.
The first 4 days are the hardest, and you just sleep a ton and take it easy. I did a lot of yoga to manage my side effects, which is good for nausea, the digestive system and also managing anxiety. I also took Compazine, which is an anti-nausea drug. I definitely recommend asking your doctor for anti-nausea medication, being near a bathroom at all points, and trying to eat as much as you can. I also ate marijuana edibles which were approved by my doctor. And trying to go for walks, that’s how I manage the side effects.
I read somewhere that ABVD is one of the hardest regimens there is in chemotherapy. It is just so brutal. It’s this wave of toxic poison rushing throughout your body.
How did your cancer react to chemotherapy?
I did 4 infusions and then [my doctor] wanted to check if it was working. I got a PET scan that showed that I had a complete response. The tumor in my chest had disappeared completely, so we were so happy.
A lot of doctors recommend that you keep going with more infusions, that way you’re killing off those hidden cells because PET scans don’t necessarily catch everything, unfortunately. His recommendation was to keep going, which was a little disappointing to hear because chemotherapy is so terrible. I hadn’t lost my hair yet. I was one of the few that didn’t, and I was like, I really want to hold on to my hair. But I trusted him, so I was like, alright, I’m going to put my head down and do 4 more treatments.
Did you lose your hair to chemo?
I lost it later, but during that point, I had really long hair and it definitely started thinning a lot, but it wasn’t coming out in clumps like a lot of survivors say. I had this feeling I could hold on to as much as I could. It’s super depressing. I loved my long hair and it started coming out. You always worry you’re going to wake up one day and look in the mirror and it’s just going to be gone. Preparing yourself for that, it’s traumatizing.
I forget what chemotherapy caused it, but it’s basically the chemotherapy they used to kill off my immune system before the transplant. It’s not even to kill the cancer. It’s to kill my immune system. They told me right away that it would pretty much remove all my body hair.
I loved my long hair and it started coming out. You always worry you’re going to wake up one day and look in the mirror and it’s just going to be gone.
Did you have a reaction to Bleomycin?
No, I know that some people take off the Bleomycin because they’re getting really severe side effects. He was like, “We’re not seeing that, so I’m sorry, we’re going to keep going with it.”
Reoccurrence
What were the results of your post-chemo PET scan?
I’d finished the 8th infusion. I rang the bell. My whole family came into the infusion center and were hysterically crying. It was a really happy moment. But of course, it’s not over till it’s over. I needed to get a clear scan so I could move on with my life, hopefully. They always encourage you to wait a month for your last infusion because they want the chemotherapy to settle into your body.
I got a follow-up PET scan and he informed me that it had gotten bigger. That’s when it’s no questions asked. This is cancer, this is not a cold.
It was about a month after my last infusion, we got a PET scan. I went in with really high hopes because I had already been in remission at that point. He told me that something was lighting up like a tiny, tiny little spot. The problem with Hodgkin’s lymphoma is that your lymph system is extremely sensitive. Like when you get a cut, a lymph node can swell up. When you have a cold, your lymph system can react. I had my COVID vaccine and that showed up on my PET scan once. The scans also can show how – they call it – hot like radioactive the lymph node is. It was very hot, very red, so that was not good.
We entered a wait-and-see period over that summer. I got a follow-up PET scan and he informed me that it had gotten bigger. That’s when it’s no questions asked. This is cancer, this is not a cold.
Processing cancer reoccurrence
I found meaning in my first diagnosis because we accidentally got that chest x-ray and it almost felt like a divine intervention. Everyone told my family how lucky we were. I didn’t have any symptoms and we just got that chest x-ray and I was stage 1, so we caught it extremely early. Many people are bounced around doctors for years. I felt like it was meant to be that I got that chest x-ray and found meaning in it and strength and hope and life lessons.
With the second diagnosis, I was like, this is so unfair. I already went through this. I already gained the lessons that I needed to gain. I had already put in all the inner work. I was already committed to living a much healthier lifestyle. It just felt so unfair. I think that’s what I really got from my second diagnosis was, cancer is genuinely so unfair and random. It’s not because you ate fruit without washing it or you smoked a cigarette once in your life. No, it’s just incredibly random. No one deserves this. I think that’s what helped me process it, recognizing this wasn’t fair. I don’t deserve this. I didn’t do anything to deserve this.
I went to my new oncologist because I was referred to Johns Hopkins, which is one of the best medical schools in the country. Your first question is, did I do anything? Why did this happen? Almost 95% of Hodgkin’s lymphoma patients are cured for the first line of treatment. Why am I in the 5%? What did I do? He was like, “That’s pretty much the first question everybody asks. And it’s not because you didn’t pray hard enough or because you ate too much sugar or you’re not positive, but it’s just an aggressive form of Hodgkin’s lymphoma that’s resistant to chemotherapy. It’s not your fault, and there’s pretty much nothing you could have done to change it.” I told myself, it’s not my fault and I was dealt a crappy hand and was going to do the best I could to fight it.
With the second diagnosis, I was like, this is so unfair. I already went through this. I already gained the lessons that I needed to gain.
Switching medical care teams
My doctor told me that when you have refractory Hodgkin’s lymphoma, the next line of treatment is pretty much always a stem cell transplant, which is the same procedure my mom got when this whole thing started. That was a full-circle moment for my family.
He was like, “I’m recommending you see 2 doctors and decide which one you like better,” which I think is really important because I went to the first one and I was like, alright, I guess I could do this. We felt like we had made a decision. Then we went to Hopkins and we left there being like, whoa. We should go there. I feel like you should definitely have a second opinion. You never know which one will feel right in your heart.
Choosing between a stem cell transplant and a bone marrow transplant
One hospital said they wanted to do an automated stem cell transplant, which is very common for relapsed Hodgkin’s lymphoma patients. Then we went to Hopkins and they said they wanted to do a bone marrow transplant which uses a donor similar to my mom’s transplant. I have a wonderful, young, healthy brother who doesn’t have a tumor in his chest. He was like, “We would love to use him as your donor.”
They also did an outpatient program at Hopkins, and that changed my decision so fast. Not staying in the hospital was key to me. That scared me so much to see myself living in a hospital for a few weeks. It’s actually becoming more common around the country, these outpatient programs for stem cell transplant patients. They had an outpatient program, so I was like, I think we should go with Hopkins. I had the insurance approve it all.
Bone Marrow Transplant
Describe what a bone marrow transplant involves
It is a very long recovery where you’re extremely immunocompromised. You can’t leave your house for a few weeks.
A bone marrow transplant is a very intense procedure where they kill off my entire immune system, and then they transfuse my donor – which was my brother’s healthy stem cells – into my body. It’s this big bag. It pretty much looks like a bag of blood, but it’s surgically removed from my brother’s hip bone. He was placed under anesthesia and they extracted his bone marrow, put it in a bag, filtered it, and then brought it to me.
At this point, my immune system is totally killed off through chemotherapy. I have no immune system, no white blood cells, and they infuse his stem cells into my body, and from there, it’s like a garden. He said, “Your immune system will start growing from scratch using your donor’s immune system.”
It is a very long recovery where you’re extremely immunocompromised. You can’t leave your house for a few weeks. You’re extremely tired because you don’t have any white blood cells and barely any red blood cells, which is where your energy comes from. You’re super tired and there’s a load of other side effects, like you’re not hungry at all. You lose your hair immediately. There’s a lot of medication. For young adults, you definitely want to do fertility preservation before your transplant. Luckily, I had done that through Shady Grove before my transplant.
Preserving fertility
That process went really well. I had a really good experience. Once you tell Shady Grove that you are an oncology patient, they put you on a fast track which they don’t do for normal people who are seeking fertility preservation. They know that you’re in a life-and-death situation. They want to get the process going as soon as possible so you can begin treatment.
Also, there are so many programs out there that will pay for the medicine so you save thousands and thousands of dollars, which would otherwise be a really expensive process. I’m not saying it’s free by any means. It definitely is still pretty expensive, especially for a young adult like me. It’s why I started a Go-Fund-Me to help pay for fertility preservation.
Luckily, it went really, really well. We extracted a lot of eggs. My oncologist was right about the chemotherapy not affecting my fertility. That made me happy that he was right because I still had a lot of eggs and the process went really well. I also feel like they showed me a lot of empathy. They knew that I was in a terrible position and time in my life. I also felt like the doctor showed me a ton of empathy whenever he saw me.
I did have a few rounds of immunotherapy, which is pretty revolutionary in the cancer world. I can’t even imagine what the next 10 years are going to look like for Hodgkin’s lymphoma patients because immunotherapy has proven to be so successful with Hodgkin’s lymphoma.
I had nivolumab and brentuximab and it got me back into complete remission before my transplant, which increased the success of the transplant tremendously. I was so happy to hear that the cancer was responsive. The side effects were night and day compared to the chemotherapy and you don’t lose your hair. I can’t wait to see what is achieved with immunotherapy in the next few years.
I can’t even imagine what the next 10 years are going to look like for Hodgkin’s lymphoma patients because immunotherapy has proven to be so successful with Hodgkin’s lymphoma.
What was your experience getting a bone marrow transplant like?
The bone marrow transplant process, it’s extensive. So much approval has to go into it because it’s an insane scientific achievement. I don’t even know the science behind it all, but so much approval goes into it. I’m getting my blood drawn all the time, my brother has to submit his blood all the time, making sure we’re both ready to do this thing. Getting my heart checked, lungs checked, making sure my liver is healthy, making sure everything is good. I had to get a sinus x-ray. A lot goes into the preliminary testing.
Then finally it’s the extraction day, which they call your birthday. My birthday is April 4th, 2023. Right now, I’m like 5 months old. It’s a very exciting day. It’s actually kind of anticlimactic. I didn’t really feel any different when I got his bag of cells injected into my body. It’s like a normal blood transfusion. I was an outpatient, so I had to be monitored at the hospital every day for 60 days. The first month, they start giving you days off. That was nice. It’s not every day for 60 days, but almost every other day.
What was recovering from your bone marrow transplant like?
My recovery was nothing short of a miracle in terms of side effects. I blame some of it on how terrible ABVD was, in that my pain tolerance was so high because of how terrible that chemotherapy was. By the time the bone marrow came around, I was like, this is terrible but not much more terrible than chemotherapy.
I pretty much did all the same way of treating the transplant side effects with my chemotherapy. I was sleeping a ton, trying to go for walks as much as I could, trying to eat as much as I could, and taking marijuana edibles. Then the mental side effects and being really transparent with my family and friends, and trying to have a strong network.
I documented my recovery via TikTok. I started a TikTok for my cancer recovery and bone marrow transplant, process, healing journey. I did a lot of yoga during that time as well. I didn’t do it for very long, but even if you do it for 10 or 15 minutes, and not even extensively, you’re going to feel a little bit better each time and maintain your strength. That’s how I helped myself during that hard time.
What effect did the bone marrow transplant have on your cancer?
The next day, I happened to be checking my email and I saw an email from my doctor that said the scan was all clear and have a great summer.
A hundred days after a stem cell transplant is when you get your follow-up PET scan to see if the transplant worked. We went back to Hopkins. Anyone who has ever had a scan knows the scanxiety that goes along with getting a scan. It is absolutely the worst feeling in the world. This mental anguish that goes with that waiting is so awful. It feels like you’re waiting to hear if you won the lottery of life or not. I barely slept at all.
The next day, I happened to be checking my email and I saw an email from my doctor that said the scan was all clear and have a great summer. Very anticlimactic, but I was so ecstatic. My mom, who was just as anxious as me, was driving to my apartment to be there when my doctor called me with the results. I decided to surprise her and record her reaction. We were super overjoyed knowing that it had worked, and now we can actually start the post-cancer follow-up journey. Because at that point, I had never gotten that far.
Reflections
How does it feel to be in remission?
You just start going back to your normal life but with this whole new outlook. You’re so grateful to be here and you appreciate the little things.
It’s so early. I just got into remission a month ago. My oncologist was like, “We’ll see you in September.” From there, we’re going to work out how often I should get a scan and blood tests. It’s early, so I think it will feel super real this winter because I’ve spent the last 2 birthdays and Christmases of my life with cancer. It’s really the fall and the winter that have been absolutely terrible. I think when that time comes and I don’t have cancer, it will feel actually real.
You just start going back to your normal life but with this whole new outlook. You’re so grateful to be here and you appreciate the little things, as cliche as that sounds. Even getting dinner with my friends, I feel so grateful because about 2 months ago, I couldn’t even do that. I couldn’t go to a restaurant. Or traveling, I’ve been on so many trips this summer because I want to make up for lost time.
I definitely have a ton of anxiety which I take medication for. I also go to a therapist and I do a lot of yoga. Definitely trying to have healthy outlets. I read a lot of books from cancer survivors. It helps me justify what I went through. Also social media. There’s a huge community on social media, so I feel like being there for each other is really important.
What would you say to someone on their cancer journey?
Cancer, and life in general, can be really unfair and you can be dealt a really bad hand that you don’t deserve. That said, the human spirit is remarkably resilient. I feel like since the start of humankind, we’ve all had faith. It’s within our DNA to fight and push on and do the best that you can with what you’re given.
This tattoo says “Per Aspera Ad Astra.” It’s Latin for “through adversity to the stars.” I feel like even when you’re struggling, you can reach for the stars and find meaning in your suffering, never give up hope, and always choose love over fear.
When I was first diagnosed, I was pen to paper. I’m a huge believer in having a journal. I wrote so much that I want to turn into a book specifically for young adult patients. Because I feel like people in their 20s with cancer are a forgotten part of the cancer community because we don’t identify as children anymore, but we don’t identify as older adults. I definitely think it presents unique challenges that I want to write about and help others go through it.
Cancer details: Most common and most treatable form of Hodgkin lymphoma 1st Symptoms: Shortness of breath Treatment: 3 rounds (6 infusions) of ABVD chemo
Cancer details: Diagnosed at age 25 1st Symptoms: Swollen lump on right side of neck/chest area, continued to grow Treatment: ABVD chemotherapy (3 cycles = 6 infusions)
