Joanna’s Stage 3 Rectal Cancer Story

Joanna shares her stage 3 rectal cancer story, which start with fertility preservation before she underwent radiation therapy and chemotherapy.

In her story below, Joanna shares the issues she had to navigate after her rectal cancer diagnosis, including how she got through in vitro fertilization (IVF), managing through changes to her hair, tending to her mental health, and transitioning to survivorship.

---

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

---

It’s like a seesaw in a way. I feel really strong some days. Some days I don’t. I think it’s being okay with that.

Allow yourself to give yourself some grace that it’s going to be a bit of a roller coaster the first couple years, but to be okay with that. I’m allowing myself that because it is traumatic to go through cancer. 

Joanna H.

---

First Symptoms and Colonoscopy

If I had something to do that day, a meeting at work and/or I had to teach a fitness class, I would restrict what I would eat so much because I knew that if I ate, I wouldn’t feel good. 

By having that something to do, I would just avoid doing it — eating — so I could go about living my life, which really isn’t living your life. It was pretty terrible. It got to the point where even eating salads would give me that really uncomfortable bloating feeling. 

Problems scheduling appointments

I contacted my gynecologist first. I’d lived in St. Louis for almost a decade and had the same gynecologist for years, so I talked to her first about it. She gave me the referral to the GI. Unfortunately, it took me almost 6 or 7 months just to get into the GI doctor. 

That was just scheduling issues. That’s really what it was. They couldn’t get me in until 6 or 7 months later. I decided to stay within that same hospital system.

I experienced an inability to access health care. It’s hard to make appointments with certain specialty groups.

Advice to others in getting treatment

I was pretty lucky. I teach at a local cycling place, and several of my regular riders or members actually worked at one of the hospital systems that I was trying to access and get a GI appointment.

One of them worked in the president’s office, so I was lucky enough to just share my story and my difficulty with having to get into an appointment. 

That morning I woke up at 4:30 a.m. and felt terrible. I had a terrible stomach ache and had to teach a 5:30 a.m. class, so I relayed this to him after my class. He basically took the matter into his own hands. I was able to get in even sooner than the January appointment. 

I still had to wait 6 or 7 months. I was actually going to have to wait almost 9 months to get in. It sounds like there’s no way, that’s impossible, but that actually is what happens.

What’s really unfortunate is that with COVID, it’s going to be even longer. It’s actually a real issue in certain health care systems.

It took a while to get a colonoscopy

I was supposed to have a colonoscopy in March, and then I ended up having something happen with work. Once again, not thinking I have cancer, so I had to reschedule.

The next appointment I was able to get was that May 13th appointment. Kind of wild. I look back and think, “What I would do to have gotten it done in March.” But it just is how it happened. There was another 2-month wait or so to get the colonoscopy.

How did you prepare for a colonoscopy?

I don’t mind the prep, I’ll be honest. I had read every article or blog about it. Everything was so negative about it, so I had a negative attitude about it.

I’ve since had another colonoscopy. I have preps; I have CT scans. I think just having an open mind about it is that it’s 24 hours of your life, and a colonoscopy will allow you to have real answers if you’re having that severe GI problems. This is the way to go to rule out anything. 

For the prep, it really wasn’t terrible. I feel it wasn’t that awful. I’m sure the majority of people feel it’s absolutely terrible, but just have an open mind when you’re going through it. 

Every prep’s a little different, but the ones that I’ve had is a thicker liquid. You put water with the liquid. You drink it. I did 2 different preps. I think they were 8 hours apart from each other.

Essentially, it’s clearing out your system so that they can go in and do the procedure for the colonoscopy. You’re not allowed to eat for 24 hours before you have the colonoscopy. 

You could have broth. There’s certain jello you can have. Make sure to google the colors you can not have (I believe it’s red, purple, blue), so stay away from certain jello.

Just be prepared. Make sure you ask the questions when you talk to your nurse practitioner, who’s going to call you a couple days before. They are very strict on what you can and cannot do.

What happens during a colonoscopy?

They put you under. I know my first colonoscopy was not long at all. They immediately found a tumor. Then my second one I’ve had post-chemo treatment, that one was a little bit longer, 15-ish minutes.

It’s a very quick routine procedure and really nothing to be too nervous or scared about in my opinion. 

Dealing with a Cancer Diagnosis

But I think from the patient perspective, it’s really difficult because you do have all these questions. I think that’s what makes cancer so difficult in the beginning. You have all these questions, and then there’s more waiting… to get to the oncologist, to see the radiologist. 

That was what was hardest for me in the beginning. Once I found out I likely had cancer, I couldn’t ask questions for almost 10 days.

»MORE: Patients share how they processed a cancer diagnosis

Dealing with a cancer diagnosis

I truly believe people enter your life for certain reasons. Sometimes we don’t immediately see it, but life kind of unfolds, and you’re able to understand those relationships.

I had met a woman in February who became instantly a best friend of mine. She had lost her mother to colon cancer when she was 19, so about 15 years prior. When I met her in February of 2019, she had just lost her best friend to stage 4 colon cancer. She was actually with me.

My husband is a corporate attorney. Again, we thought nothing was wrong with me in terms of cancer. He dropped me off at my colonoscopy and was going to meet me back at home that evening.

She picked me up from the colonoscopy and was actually there when I woke up. The doctor told us together. Once again, it was a newer relationship, but we instantly bonded. I just feel so lucky to have someone who was so experienced not only with cancer, but my specific cancer.

I really relied on individuals right away who had cancer. I almost immediately got involved in the cancer community. I have a dear friend and mentor who’s very well known nationally and internationally with the community for colorectal cancer. I met with her almost immediately.

Building those relationships and asking those important questions before I even met with my oncologist was a huge way in which I gained back control at a time when you feel almost hopeless. You feel you have no control. 

That is something I know got me through cancer. I think receiving that advice from several people who went through this already was just huge, because we don’t know. If it’s going to happen, it’s potential. It might not happen.

For me, asking that question of, “What can I expect?” The answer was really awesome. It was, “You can expect X, Y, Z with chemo, but everyone’s journey is different. Don’t compare your journey with someone else’s, especially in the beginning.” 

Focus one day at a time. I know that sounds so cliché, but it really forces you with cancer to do that. I can’t worry about something in 9 months. I have to worry about today and what I can do to receive the most information to be the most informed cancer patient.

»MORE: Read different experiences of a cancer diagnosis and treatment

That’s how I found my doctor. I called almost every person I knew that had some connection to the cancer center here in St. Louis. It made a world of difference, because he was exactly the doctor I needed based on what people had told me [about] his demeanor and what to expect from him.

From the get-go, people should be really advocating for themselves by forming relationships with people in the cancer community.

»MORE: Join other patients and caregivers on The Patient Story social media community

Cancer Treatment Decisions

Next steps after the diagnosis

I had an MRI with that same health care system that diagnosed me. The MRI and biopsy confirmed that I did have cancer. It was not benign; it was cancerous. After that, I went to my oncologist in the cancer center at a different hospital system. 

I remember everything was so scary in the beginning.

They weren’t able to get me in right away. I had to wait maybe 2 days. For me, that felt like forever. I had to go to an appointment. My MRI was at 6:15 in the morning. They made a special time slot to get me in. I just remember it was so scary.

It was almost like Caleb, my husband, and I couldn’t even think straight. We couldn’t even find the MRI area. We couldn’t think about what we were doing. 

I remember that technician was wonderful. He explained everything to me once he found out that I was new to this. That really confirmed that I did have cancer, like I said.

That was scary. I thought to myself, “Okay, I have cancer.” But then it almost gets worse in a way, because you have to do a CT to confirm it’s not stage 4. Then you get staged. 

There’s a lot of check-ins that I think people who haven’t gone through cancer don’t realize exist.

What happened before getting an MRI?

For the MRI, you have to have a contrast. It takes roughly 30 to 45 minutes. Some people have a hard time with the contrast. I am one of them; I get extremely nauseous from the contrast.

Most people thought, “It’s nothing.” You just have to sit very still, so if you have any type of back issue, it might not be the most pleasant experience for you. You have to sit still. 

How do you decide where to go for cancer treatment?

I went to a different hospital system. Immediately, my husband and I Googled cancer centers. Luckily, I had worked at this hospital system in the pediatric side years prior, so I knew that Siteman Cancer Center was one of the top cancer centers in the country.

In terms of finding my doctor, when I saw him, that was from word of mouth. We contacted as many friends as we knew that had [been] in and out of cancer. We asked, “Who do we go for colorectal cancer in St. Louis?” By the luck of God, we received the same person’s name over and over.

Just to us, that was a sign of that’s where we need to go and who we need to see. Once we found that insurance was going to cover it, that I was in-network, it was an easy decision. I switched health care systems, and I was able to get into him about 8 days later.

Meeting your medical team

They didn’t know what stage I was, so I had to do a CT in the morning. Then we met him (oncologist), as well as the radiation oncologist and surgeon.

Something I think a lot of people should be aware of is that, especially when it’s dealing with advanced cancers, you are going to meet the entire team. That was new to us. We had no idea.

After I had my CT scan, I met the radiation oncologist. I didn’t know I’d be meeting him that day until I got there. 

In that same meeting, the surgeon was sitting with us as well. We talked to them for about an hour and a half. They exited, and then my oncology team came in. My doctor, my nurse practitioner, and my nurse coordinator — the whole team.

We were there, between the CT scan and finally leaving, close to 6 hours.

Advice for others on preserving fertility

If I could give one piece of advice, I would say to really push your doctor on that. Once again, it’s not part of their specialty. It’s not that they don’t care about that, but they are so focused on getting you to be cancer-free to continue to live that it’s not top of their mind. I’m so glad I pushed my doctor on that and was able to go through IVF.

»MORE: Fertility preservation and cancer treatment

[There were] 10 days worth of shots, and then I went in for the procedure. You’re not fully out. You’re aware of what’s going on, to a degree. I remember the procedure being about 20 minutes. You’re in; you’re out. Unfortunately, I developed ovarian hyperstimulation syndrome (OHSS). I was pretty bloated and pretty out of it for a week or 2 while my ovaries settled down.

The reason that was the case is that they shot me with a little bit more hormones because I started radiation 4 days later. They wanted to make sure that they were successful. It was a high-risk case. If you have that tight timeline, just make sure that you’re well versed and well educated on what can happen during IVF, because there is a risk of that syndrome happening. 

I thought overall it was a really good experience. I’m very thankful I was able to go through that.

»MORE: Read a patient’s detailed IVF journal

Getting help paying for IVF

If you are diagnosed with cancer, advocate for yourself when you call a fertility clinic. A lot of fertility clinics offer what they call “rescue retrieval,” so a portion of your bill will be comped — essentially their gift to you — as well as some storage fees that go along with that.

Before you even go through radiation, you have about a 2-hour appointment where they make a mold of your body so that the radiation can go into a localized area. The beam is positioned to go into the side if you’re getting radiation into your colorectal area.

Essentially, be prepared for about a 2-hour appointment with some technicians to create that mold. I think that’s pretty similar to a lot of cancers.

I was petrified for radiation. It doesn’t hurt when it’s happening. Some individuals burn from their radiation. I did not because I had a very short 5-day protocol. I was probably on the beam for less than 5 minutes every day. I went every day at 8 a.m. for 5 days.

What happens during the radiation procedure?

I know Siteman Cancer Center has 3 proton beams they use for radiation. I had to go to the basement. You check in. Usually there’s a bit of a wait involved, 10 to 15 minutes. They call you back. You can only go by yourself. I couldn’t have my husband come with me.

They have 3 technicians there. They are very diligent about what they do. They will have you lie down on what looks like a CT scan board. They will position you.

Most of the time you’re in radiation, they are lining up the proton beam to where it needs to go in order to be most effective (i.e. hit the tumor). I would say that’s what takes the most time.

My best advice, especially on your first day, is it goes back to that deep breathing, because you have to be extremely still.

Super still while they’re doing radiation. The actual radiation going into your body is a couple minutes. All in all, it’s a pretty short experience, and you will not normally experience any side effects for days, weeks, or even a month after.

What helped you get through radiation?

Another thing that really helped me is when I got there, I was really distraught that day. I couldn’t believe this is where I was at in my life. Something I feel really lucky for is I know the cancer center does an amazing job at hiring amazing people in the front desk, their technicians.

They asked, “How can we ease your worries right now?” I asked for music. “Can you play music while I go through radiation?” And they did. It was another nice little touch that I felt like I was their only patient that day.

Don’t be afraid to ask for things, because a lot of these individuals go into this work because they want to help people, especially people in compromised situations such as cancer patients.

»MORE: Read other patient experiences with radiation therapy

My life kind of slowed down, but that’s what I needed to do to get through that. Then one day, they just stopped, and you move onto the next thing, which is chemotherapy.

»MORE: Working during cancer treatment

Routine pelvic MRI scans

With the pelvic MRI, my oncologist wanted to determine if the tumor was shrinking, which luckily even after the first 4 rounds of chemo, it was shrinking. He stuck with the pelvic MRIs twice, 2 rounds of that, before he then went onto a CT scan.

The pelvic MRI was just similar to the one I initially had to determine how big it was in my pelvic area, in my rectum. That takes about 45 to 60 minutes in order to have that scan.

How long did it take to get scan results?

It’s relatively pretty fast. I usually get a call the next day. If a holiday falls in there, it messes things up. Normally, once you’re an established patient, they like to call you — at least my oncologist does — usually the next day.

»MORE: Dealing with scanxiety and waiting for results

Advice on scheduling scans

With my CT scans, I like to go in the morning because I don’t have any nausea associated with it. With the MRI, I like to do it in the evening because I have such extreme nausea with it that I like to go home and just have no plans for the day.

If you’re affected by that contrast dye, you’ll know right away. It’s pretty rare, I’ve been told, but it’s something I struggled with.

They didn’t tell me, ‘You’ll for sure do 12 rounds.’ They said, ‘We’ll hope for 12 rounds in order to completely shrink or have your tumor disappear, then kill off as many cancer cells as we possibly can.’

For me, the regimen is 6 months unless your body just can’t take it anymore. A common side effect is that your body more or less begins to shut down a little bit during the end — the 10th, 11th, or 12th round. 

What are the chemo infusions like (outpatient)?

I would normally go to chemo for morning appointments. You would go in, go to the blood clinic area, have your blood drawn. Usually, you’ll have a port.

Chemotherapy lasted about 2 hours for pre-meds, including anti-nausea. They did a lot of different medications to kickstart your body before the chemo went in. 

Then I would do a 2-hour infusion with my chemotherapy. They’ll do that to watch you to ensure you don’t have any adverse effects. Then after the 4.5 hours, they send you home with a chemo pump. You will have that with you for about 48 hours.

What’s it like using a chemo pump?

Your pump tells you everything. It’ll show you how many units left you have of chemo, and so you know exactly when it’s going to go off. By your third, fourth, fifth rounds, you know what’s going to happen. It’ll beep for you to tell you that it’s empty. 

Something I did is I became comfortable changing my wardrobe a little bit. For me, in the first 6 to 7 rounds, I felt okay on chemo. I was definitely dehydrated, but I was able to go about and do things, run errands with it. I was able to live a pretty normal life with the pump. I definitely felt tired; I lacked energy. I did things on it.

Tip on handling chemo: hydration and getting fluids

It’s so important. That’s something I really harp on is find ways in which you can drink water while you’re on chemo.

That was a struggle I had until the sixth round, when I realized how important it was. Then it was a game changer for me in terms of energy and recovery once I was unclipped (from chemo bag).

Something we were told from the get-go by a patient who’s now a survivor — she told me it was almost impossible for her to have enough fluids during chemotherapy. What she would do, and what I did as well, is when my chemo pump would go off, we would go into the cancer care clinic. Most hospitals have this; it’s essentially a clinic open on the weekends. 

What we would do is go to the cancer care clinic. They would give me a bag of saline, so I’d have a whole bag of fluids. Then I’d have the nurse take the needle out of my port.

A couple reasons we did that. I just couldn’t get enough water during chemo. I was very nauseous. I didn’t feel like drinking water.

We just wanted my port to stay in the best shape it could to eliminate infections. A registered nurse or nurse practitioner accessed and de-accessed my port.

I would recommend that for people. Go the extra mile. Get the fluids. Then have a nurse take it out to confirm it’s not swollen or that there’s an infection. The cancer care clinic had all nurses in it, and I believe all of the individuals who accessed my port were nurses (RNs).

I did not have dryness on my hands or feet. I did have a throat sore issue during round 6. I was just really thankful that I asked a lot of questions and was told that it was a very common side effect.

I made sure to have the magic mouthwash with me before it even happened. I had those resources available when I did start to experience those side effects.

I think my biggest side effect that I still experience today was neuropathy. Especially for colorectal cancer patients, that is the most common side effect. You almost can’t get away from it. You’re going to experience it at some point. That is something that I still experience, but it’s gotten better. It gets better. 

During those 48 hours, the neuropathy was pretty bad. My neuropathy in my feet was like muscle spasms and muscle cramping. That had to do with the neuropathy and the dehydration. Dehydration causes the muscle cramps that a lot of cancer patients experience.

Hair thinning

I used to have extremely thick hair! So much that I used to actually thin my hair out every 6 weeks. I would make comments like, “I wish my hair was thinner. It’s so unbelievably thick.” Pre-cancer, I would say that.

With my chemo, I didn’t lose all my hair. It just thinned out, so I lost all my thickness.

I don’t think you realize how traumatic that is until you go through it. I’ve had some people tell me, “Well, at least you didn’t lose it all.” I think it’s a little insensitive because until you’ve gone through it and you’re washing your hair, your hair’s falling out in clumps, you don’t realize how much of that is your identity. As a female, I think it’s so difficult to lose it.

»MORE: Dealing with hair loss during cancer treatment

That was pretty hard for me. I’ll be honest, it’s still hard for me. I’ve had to cut my hair because it was so thin at the ends. That hasn’t gone away.

I’m still trying to accept the human I see when I look in the mirror because she’s different than she was a little over a year ago. I do think that’s part of cancer — accepting yourself where you’re at, not where you want to be. 

Losing your hair — I hope everyone watching this gives themself some grace. It’s traumatic. You’re not being dramatic; it is a traumatic situation. 

Post-Treatment Monitoring

Results after chemotherapy

My tumor had completely disappeared. There was no sign of it in my rectum, and my CEA levels had gone back down to a normal range.

Deciding against surgery

When I met my surgeon, he said to be prepared to have surgery. [Because of] where my tumor was and how large it was, he said, “You’re 100% a surgery candidate. You will have surgery.”

I was determined after my PET scan after chemotherapy that I was actually a candidate for a non-operative approach. What that entails is for the next 5 years, I’m very closely monitored with blood work, CT scans, PET scans, and scopes.

I actually have not had surgery, and I’m part of a very small group of people that fall into that category. I feel really lucky that chemo worked so well in my situation. 

It’s definitely a riskier path. I fully, fully recognize that, but I don’t think there’s an easy path with this. I could have had surgery to remove my rectum, and the likelihood of cancer coming back is very slim.

Right now I’m in my first year, about 6 months out from chemo. The likelihood of it coming back is about 40%, which is why I’m so closely monitored. Colonoscopies, scopes, scans, and blood work will hopefully find the cancer if it does come back and find it fast!

Describe your monitoring protocol

(For 5 years.) At that point, I’m considered cancer-free. Then it starts with 6-month colonoscopies and then yearly colonoscopies, so it’s for quite a while.

But the extra work, for me, is worth it. I’d be remiss if I told you that I’m not scared to have an ostomy. I am. I think it definitely changes your life. Not forever, but it’s a life-altering surgery.

When something like that is about to happen to you, you need to think about all the avenues before you go down and have such an invasive surgery. You go down that path. I think we have done our due diligence, and we feel comfortable with our decision.

You have to also get endoscopies. What are those?

They call it a light colonoscopy, so you’re not put under. It’s actually just an outpatient procedure, but the procedure sounds scary. It’s not.

I had it a week or 2 ago. I was in the doctor’s office for maybe 15 minutes, so essentially it’s a scope that they insert into your rectum. It ensures the tumor has not regrown so that there’s no tumor growth. In my case, re-growth.

I’ll be honest, I get nervous every time I go to the surgeon. Like I said, it’s a short procedure. You’re in; you’re out.

Just allowing yourself to give yourself some grace that it’s going to be a bit of a roller coaster the first couple years, but to be okay with that. I’m allowing myself that, because it is traumatic to go through cancer. 

But I think there’s a point to where it’s super healthy, and then it’s a healthy level of concern. I like to watch myself on that. Am I obsessing over it? Or am I just a concerned human who’s worried about their cancer coming back? I like to keep myself in check.

I’m currently going through temporary menopause. I wish I would have asked more questions about that. I felt like after chemo, they kind of let me out into the world. My life was supposed to pick up where it left off, and it just doesn’t work like that. Some essential things I’ve done is joined a group of gals on Instagram. We talk about what life after cancer is. We are all colorectal cancer survivors. 

Tending to mental health

I have a grief and loss counselor I talk to on a weekly basis, because I think I am still grieving what was my life pre-cancer. It pops up in really small ways. I think where I’m at 6 months later is that I’m just trying to accept myself for who I am.

I don’t think I need to be “Joanna, cancer patient,” but right now it’s a huge piece of who I am, so I think accepting myself for all the things that carry with it post-cancer. 

I hope people recognize it’s not just a year journey. It’s going to be a lifelong journey. Your life just looks a little bit different than everybody else’s without cancer. That’s okay. That comparison factor has to go away.

I think those are the things post-cancer I’d love to relay to people. The hardship of it doesn’t stop. That’s something I didn’t really realize was going to happen. 

---

Rectal Cancer Stories