Hodgkin Lymphoma Stories
“Being diagnosed with cancer is definitely a scary thought and it's a very scary process, you don't really know what you're in for but you do have a lot of people there for you. And just stay strong.
I think the attitude of it all through the whole process definitely helps a lot. Truly feel your feelings while going through everything, don't hold anything in. Just know the positivity really does help and it makes a huge difference through the whole treatment process.
Name: Danielle Doyle
Age when diagnosed: 25
Growing lump on right side of neck (swollen lymph node)
Tests & Biopsies:
Pulmonary Function Test (lungs)
Bloodwork before every treatment
ABVD Chemotherapy Regimen
Each cycle = 1 month, bi-weekly
Total: 6 infusions
Decided to freeze eggs before chemotherapy
Daily hormone shots
Egg retrieval procedure (26 eggs)
Table of Contents
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1. First Symptoms & Tests
What were the first symptoms?
I really didn't have any symptoms except for the one lymph node on my right side that was just getting bigger and bigger as time went on. It just wasn't going down.
What made you go to the doctor’s?
I noticed that the lymph node wasn't going down, it was just getting bigger, it was only on one side. And as soon as I started to feel other ones lower down my neck, it just didn't seem right.
The day I ended up going to see my primary doctor, I just went in there and I told her that I had this little lymph node and it wasn't going down. She wanted to get blood work and then I went out to get ultrasound done. In the ultrasound, that's when we found several smaller lymph nodes.
Describe the ultrasound
It was the same exact day that I had gone and seen my primary doctor when I got the ultrasound. I felt like my doctor had known that something was going on but wasn't really quite telling me. I just felt scared in a way. Worried.
When had I gone for the ultrasound, I just felt like they were just subtle, nice. The one lady who had done it, she was very sweet, but you could tell she was really finding a ton of things on the right side just because she was taking a lot more time on that side than the left side.
The whole time I just kept thinking, "what if this is something very serious?" I just didn't know what it could have been. It was just a regular, almost like an ultrasound for a baby, but it was on my neck.
How long did it take to get ultrasound results?
It took about a week. My mom had been calling the doctors and being like, "What's going on? What's going on?" to push those results.
It was very hard because I knew - especially with my mom freaking out - I just knew something wasn't right. I just don't know why it took them so long to find out these results. I was just in a panicked stress about if they had known something and were trying to come up with some plan, but it was taking longer than what it should have. So I was angry, upset, worried. My stress and anxiety were going up.
Describe the CT scan
After the ultrasound he really didn't quite give me any result really, except for the fact that I had a lot lymph nodes and they wanted to then go through the CT scan. So I went through the CT scan, which also showed lots of smaller lymph nodes.
I was actually very nervous during the CT scan. I didn't know. Once again, just going through all of this not knowing what's going on, just knowing there's something not right. When I found out I needed to get an IV, I was just so nervous because I didn't expect that. I was terrified of needles so I was a wreck the whole time trying to figure this out, what was going on.
The nurses were great. They were so sweet, but I was just all stressed and worked up. I laid down and they pushed the medication through to lighten everything up. I was in this machine where they scanned my entire neck. That also showed all of the swollen lymph nodes.
It probably took about an hour to get me all done. I was just going with it, but also being so nervous. I just didn't understand. I didn't even really know what a CT scan was.
It was painless. Except, when they injected [the dye]. It was an interesting process, the way that it makes you feel. They tell you, "Okay, you're gonna feel like you're going to have to go to the bathroom. You're going to have to pee.” That's exactly what it felt like, it's like a weird feeling. I just didn't know what to expect.
How long did it take to get the CT scan results?
It really didn't take long for me to know that I had an appointment with a doctor at Wilmot Cancer Institute because I had seen it on my chart before I was even told by my doctor. So I once again knew that they always figured that something was going on, but they didn't want to say that yet. I think they were just trying to wait for all the testing and everything to really confirm that this may be what we're looking for.
Describe your meeting with the ENT doctor
I knew I had my appointment with the ENT doctor. I went there with my mom and just seeing the word “cancer” in the place that I was going to, I was like, “Wow, there's the chance that I could have cancer.” I even got a new patient folder with all this information on it, like how there's support groups for cancer patients and all this. I still didn't know that I was probably going to be told later on that, "Yeah, here you have cancer."
There were just so many doctors and nurses around. I still had no idea what was going on. They were doing a lot of testing. They had to put a tube down my nose, into my mouth, taking a look basically at everything in my neck. Then they told me, "Okay, we're most likely looking at lymphoma. But what we're going to do is we're going to do a needle biopsy, and that will rule out any type of infection."
So they went through with that and it came back right then and there that there was no infection.
What’s the needle biopsy like?
They took a needle to my neck and then they were able to take some of the lymph node out just to get a sample to it, t look through and see if there was any type of infection. The doctor had told me right then and there they would know if it had an infection or not.
What’s the excisional biopsy like?
After that, they told me, "We're definitely looking at lymphoma and we do want to have you have an open biopsy surgery done." That was the next week, within a few days. I had to prepare for it. They gave me all the papers. All of a sudden I'm signing all these papers for my first surgery and that's when I knew, "Okay, I've got cancer. Now they just need to find out what type."
When I went to the hospital with my mom, we made it very early in the morning. I couldn't eat or drink or anything. Once I got in there, I realized wow, I looked up at the screen and saw that there were numbers. So really, you're a patient there, and you're just a number. It was all this new experience. I've never had surgery in my life.
How long did it take to get the excisional biopsy results?
After the surgery, I think it was about two days. I got the call and they told me they were gonna call me with the results. I was waiting and waiting and then, yep, I finally got the call. He had told me right then and there it was Hodgkin's lymphoma.
2. Diagnosis & Treatment Decisions
How did you feel when you heard the diagnosis?
I just remember I went home and I did all my research. I was looking it up. I didn't really quite know about lymphoma or what types. I just felt like all of a sudden I was educating myself on all of these types of lymphomas and which one I could possibly have.
I got the call while I was at work. I had already told a lot of my coworkers. They saw everything that I was going through with testing and everything, so it wasn't a shock to anybody. It wasn't even a shock to me once I got that call from the doctor. He had done the excisional biopsy when he told me I had Hodgkin's lymphoma.
He says, "Danielle, I hope I've prepared you enough for this," and I said, "Yeah, you really did. You prepared me. I'm just ready to do whatever I have to do to get rid of it."
I really wasn't aware of what I was going into, but I just knew like, okay, stay strong. You're gonna get through this. I have amazing friends and family who are gonna be there for me.
How did you break the news to your loved ones?
I texted some of my friends. My co-workers, I feel, they just knew. I told them this is what we're looking at. They knew it was lymphoma so I just mentioned, yep, it's Hodgkin's lymphoma.
How did you decide where to get treatment?
I was just placed right over at the cancer center by the doctors and I've always heard really good things about it. I know a lot of people, some family friends, who have gone there. I really liked how all the doctors and nurses treated me there. I was really happy that I was placed there.
Did you get a second opinion?
I never really did get a second opinion just because I figured that I was in a good place, and we had caught it early. I figured they knew what they were talking about.
They already know of a really good plan for Hodgkin's lymphoma treatments and what has cured past patients. If it was a different type of, maybe like a more difficult type of cancer, I think I would have done more looking around to make sure. I think it was very straightforward, so I was like, "Okay, I'm ready."
Describe the hospital you went to
I was at a large hospital. I've always been a person that likes to be around more people. I was happy to see that I wasn't the only one there, even though I was the youngest that was there. I knew that there were other people around me. Even in the pods, getting treatment, it was nice to always be around people. So I did really enjoy the large hospital.
I think that it was hard to see and look around. I was the only young cancer patient. I probably saw one other person that was my age there one time. A lot of the time, it was all older people. I felt a little lost and think how did this happen? But there were really no negative things about this place. I really did love this place a lot.
Any advice on choosing the right treatment center?
Any advice before going into treatment?
I know that with my treatment plan, it was always known that I was gonna do three cycles, six treatments of chemo ABVD, but then they were also trying to get me to do radiation.
I'm glad that I chose not to do radiation. When they do come up with a plan, just know what's best for you and your body. Just know your options.
Being a self-advocate
When I was being told my options, I just thought, "Okay, well, you're telling me that there is radiation that I could do, but also that it could increase my chances of getting breast cancer because it would have been too close to my breast at such a young age. That wouldn't have been right. So why add that on if I know that chemo can just help me out?"
Maybe even too, have a plan, but just take it step-by-step. You don't always have to go with the whole plan. Just take it day-by-day, step-by-step. If chemo does it then why go and try to add more to it if you don't need to?
What was your treatment plan?
I was told that I was going to have to do three cycles, each would be two treatments of ABVD chemo. Those are the four drugs that I would have to be given. A chemo treatment one day would be about probably four hours.
Describe the chemotherapy regimen
So six infusions total. For every cycle it's two treatments, so there was 1A, 1B, 2A, 2B, 3A, 3B. I made my chemo treatment days on Fridays and it would be every two weeks. So, I would get one treatment on Friday, and then the next Friday it would be a free day, and then Friday after that, I would get my next treatment. So you'd do 1A, and then two weeks later 1B, and then again it would start 2A, two weeks later 2B.
How was the chemotherapy process?
I’d first go and get blood work. After that, I would get assigned a pod and just sit there in the chair. They would put the IV in. They'd give some medications like the steroids and all of that to help a little bit. I did ask for anxiety meds because I was getting so worked up and worried.
Then they started off with the first two medications, one each at a time, and they would have to sit there and they'd have to push the medication through the IV slowly. They had a little timer, and at first it was okay. In the first one it was just like, "Well, what is all is?" I was learning it all myself, taking it all in.
Then the last two medications were through the bag which they would just drip into the IV. As time went on through treatments, it got to me more and more with nausea feeling and just all my emotions.
Each treatment got harder as time went on, but I always had support systems there. I was always allowed two people at a time.
What were the chemo side effects?
During the treatment I was okay, and then the next day I would wake up and I'd feel a little out of it, a little strange. My face would almost look like I had just gotten this sunburn. It was weird. It made my skin very red, and then I would be okay.
By the second day which would be a Sunday, I would just sleep for about 16 hours. Mondays are my days off from work, so it was nice that Mondays I was able to just take it all in and just relax.
As the week went on, it was more nausea. Dealing with a lot of that. Sometimes I'd feel a little dizzy.
I would try to eat as much as I can, but I would start to experience jaw pain. That first week after treatment I was really experiencing all the symptoms and then Week Two would come around and it was like all of a sudden I was back to myself a week later, just to go and get treatment again in four days. I just know that with the jaw pain, that was scary. I actually ended up calling my oncologist about that. That I really didn't know what to do. I just rode it out.
Constipation was actually my worst symptom during chemo. I had never experienced that before chemo. The doctors had told me about what medication to get before I start treatment, which I did. I went out and got those, but nothing was working. It took me a very long time to find out what I could do, but that had me in bed for a while because it became very painful.
MiraLAX was the one that I ended up finding out on my own that would be the best that would work. From friends and family, they were the ones who had recommended I get that, which is very easy to purchase. I was able to grab that and just start that, which ended up helping a lot. Halfway through my treatments, I no longer had to deal with that anymore, got better with that, but that was after I was trying all of these other things that my doctors were telling me about medication-wise.
Any advice on how to deal with side effects?
Right off the bat, when you're told that you need to start treatment, ask about anything that could help with any type of symptoms that you may get or may experience. Just get any advice that you can from them.
Also, try to talk to your family and friends about it because they may tell you things that the doctors may not tell you, and some of the symptoms could easily be taken care of by doing other things besides medications.
How did you decide not to get a port or PICC line?
Weirdly, a port was never talked about. When I was doing my research on Hodgkin's lymphoma, I had seen that a lot of people were getting this port or a PICC line so I was wondering why that was never brought up, but I was almost like, "I don't want to bring that up because I don't want to have that if I can try to do everything through an IV." That's what I wanted to do so I just went with it.
Your veins eventually became an issue
Any advice on whether to get a port or PICC line?
I would only get a port if I really needed to go through maybe 12 or more treatments.
When it was getting really bad to find a vein I did keep thinking like, "Oh no. What if I do need more treatments? I'm going to probably need to go to get a port," but it never got to that point, thank goodness.”
I was glad that I did just go through the IV process. They were able to eventually always get a good vein. With good nurses, they were always to find something.
4. Post-Treatment Scans
How many PET scans did you undergo in all?
After my excisional biopsy, they did a PET scan to find out exactly the staging of the lymphoma. After I was done with all six of my treatments, they wanted to do a PET scan to make sure that the chemo had worked, which it did.
Once I was told I was in remission, they wanted to schedule a PET scan for about a month or two out. Once they had realized that we had two clear PET scans after treatment, they did not want to any more. So, all together, I had a total of three PET scans.
Describe the PET scan
The first one that I had gone through was a learning experience for me for sure. I had no idea what I was getting into, but you go in there and they inject you with the radioactive medication through an IV.
They check your blood levels again with just a prick to the finger. You do have to drink this liquid which lightens up all of your organs, and then after that you have to wait an hour. Once the hour passes you go into the scan.
You lie down. They strap you in a little bit. If you are claustrophobic like me, they have medication options for you if you want. I just kept my eyes closed and just went through it. You slide in out [of the machine] through the whole process.
I just kept my eyes closed. Sometimes they'll play music for you if that helps, and it takes about 15, 20 minutes. They take a few pictures, and then after that, they'll come out and they'll unstrap you, and you're all set to go.
How long did it take to get the PET scan results?
It would take about two to three days after usually for the results to be returned back to me.
Scanxiety is a real thing. I really experienced that a lot every time. Especially as time went on I think it just got worse. Even after treatment, it brought up memories of when I was in there before, when I had the cancer in me. So, scanxiety is definitely a thing.
I think it's all built up before you go into a scan. You just have all of this anxiety of you know, you just pray that it's gone, or you pray that the chemo's working. Or what if it's just gotten worse and it's just all these things in your mind that are just running through your mind, and you're just sitting there questioning everything.
A lot of my experiences from treatment and chemo [were] being brought up, and then you just sit there like thinking, "How could this be?" So, a lot of questions are just raising the anxiety of it all.
How did you get through the scanxiety?
I really tried to just stay focused, be strong, think positive and just pray that the chemo worked and if you still have cancer in you, you’ve just got to keep the fight going.
5. Hair Loss
How was the hair loss?
I started to lose my hair exactly a week after my first treatment and I had so much hair so I was like, all right as long as I can't really notice right now I’m just going to go with it. When I was brushing my hair a week after my first treatment I could tell it's actually really happening. I always told myself I'd deal with it when it starts to happen and now it's actually happening so I actually broke down a little bit. I couldn't believe it was actually happening, it was reality and then every time I was in the shower it was just hair everywhere. It was constantly on my hands.
My friends and family were telling me I needed to look into a wig. It took me a very long time to come to the realization now, like okay I'm gonna need to get a wig. I started to do my research, it wasn't until I actually finished treatment that it was around, like the holidays were coming up and I was just like, okay I do need to get a wig. A hat is not working anymore, I really have no more hair.
I eventually did buy a wig and I still wear it to this day. Still trying to get through all of that and as my hair grows I can feel myself growing as a person again and getting, not back to where I was, but getting back to life and just trying to stay strong through it all.
Did you shave your head?
I never shaved my head. I didn't really want to, I think that was very hard for me. I was just kinda like well if I can just go with it a little bit and see how long I can carry this out for without having to shave my head or without getting a wig or without having to wear hats. I was just in denial that I was losing my hair, and then it got to the point even my co-workers were like, 'Yeah, I think you should do something. You should look into something.'
What killed me also was that here you are told, okay, like, 'You're in remission, you're cancer free.' And then you're still looking at yourself in the mirror, like wow, I still don't have my hair though, and that's a huge thing for me. You're in remission, you're cancer free but, I'm still looking in the mirror seeing everything I've gone through and the loss of my hair.
I finished treatment October 2018 and it was about a month later that I ended up really working up the courage just to go get a wig. And, so I've been wearing it ever since November 2018.
Any advice on how to find the right wig?
I would recommend going somewhere, if you can, in person to get a wig. I was able to find somebody in the area that I live and she was great, I tried on many different ones while I was there. And as soon as she put this one on, it was like my exact hair. It was the style I get, the color I get when I go to a hairdresser. So, it's great to be there in person and actually try them on, if you can.
Any problems with wearing the wig?
I never found any problems with the wig, just trying to keep it stylish and smooth. I do find it a little tricky though. I used to love hugging people and now it's just like watch the hair, be careful of the hair. It's never been itchy or anything but sometimes it does get in the way and I feel like with the spring and summer coming up, I am hoping to not wear it so much because I feel like it will get very warm and it's not going to be something I'm going to want on my head all the time.
6. Emotions, Support & Care
What were the hardest parts mentally and emotionally?
I feel like the chemo treatment itself was very mentally draining for me, having to go over there every two weeks knowing that, okay for the week I'm not going to feel well, I'm going to be sleeping for 16+ hours and I'm not going to be able to do the things with my friends that I normally would do on the weekends. I think just receiving the infusion, the treatments, that was probably the hardest.
What helped you through that stress the most?
I think what helped me move forward is just knowing that I have such a great support system and that this isn't forever. This is only going to be a few months of my life and then I'll be back to doing things that I love to do and I have the rest of my life to live so just focusing on the now and just getting through what I'm going through right now.
Talk about being young with cancer
I was 25 when I was diagnosed with Hodgkin's Lymphoma and I am now 26, going through everything right now.
I feel like in a way it has set me back a little bit. Especially with dating or just wanting to enjoy certain things in life or just go out with friends and for that little time period I felt like that was all taken away for a little bit.
It really made me grow up a lot and just really realize, like wow life can be taken at any moment or things can happen at any moment where you gotta really just focus on you and getting better.
I don't know, I feel like in a way it was something that held me back a little bit but now it's becoming something positive where I feel like I can help other people.
How did you approach dating during treatment?
While I was going through treatment I just knew that I needed to focus on myself and so that's why I really couldn't focus on dating. I didn't really want to bring anybody into all of this and I don't even know how I could have really dated when I was going through treatment.
That really hurt me a lot because I am young, I'm getting to that point where I do want to be with somebody. And even now after cancer, a lot of my friends, everybody knows what I've gone through and there are guys out there who do want to date me but it’s also are they actually aware of everything I'm going through right now? And I'm still not fully okay with everything so it’s been a little bit of a struggle in trying to open up again and try to be okay, focus on that and not this.
I feel like I'm healing myself first and then once I feel like I'm ready again to date and do other things again then I'll be good.
Time is definitely a pressure. I feel like right now this is my time to be out and to date and socialize and so for those few months where I was basically sleeping 16 hours and going through treatment and not really myself I do feel like that took up some of my time. Now I feel like I'm having this anxiety of, oh my gosh I need to make up for that time. But I know too that I need to focus on healing myself first.
You want to help others now who’ve just been diagnosed
I do feel like this has become something positive. I notice in the past few months, too, I've just been much happier, I've been able to get back to the gym and seeing that there are all these other cancer survivors or cancer fighters out there on social media that are my age, a little older or a little younger, just helps.
Why was it important to find a “cancer community”
It's always good to find other people who are going through that exact same thing, going through chemo.Your friends and family are there for you, they're always there for you, they're going to be there for you. It's always good to vent to them but I think it hurt them and it hurt me that they don't really understand what it was like to actually receive chemo and to have those symptoms.
You don't really understand until you're actually going through it. I didn't understand either, before I started going through treatment. So, it was good to see and connect with other people that understood exactly the symptoms and everything that I was talking about and just like that. Losing your hair, nobody will understand until it actually does start to happen to you.
Were you able to ask people for support?
I felt like I was able to ask for support but also I feel like I was a zombie through treatment and I was just trying to get through it. It wasn't until afterwards that I realized I needed it more than ever, the support and comfort. During treatment I was just focused on, okay just get it done, get through it, you got this. But then it wasn't until after that I had the most crazy breakdowns and that's when I started to feel everything.
I was so happy that I was told I was in remission but after that, I was just like okay, what now? Okay, now I don't go to my oncologist every two weeks, I don't have to go through chemo. That became my life and now it’s all of a sudden like okay, you're good, you're done. Then I was just having that fear of what if it comes back? Everybody else around me was just so happy and I was happy, too, but I still had that inside me where I was like what if, what if? And having to deal with my hair.
How important was it to have caregivers?
I found it very important to have caregivers. I would spend the weekends at my mom’s, that weekend that I would get treatment just so that she could cook for me, or just check on me to make sure that I was still breathing after 16+ hours of sleep. Just somebody to be there for me.
I was living with my one of my friends. She was very supportive, too. She would come in and check on me and be there for me, but, I just knew that I needed to go home on the weekends to my mom’s when I would get treatment.
7. Work & Finances
Were you able to work through chemotherapy?
I did work through treatment. I know that I wanted to work, I was given that option where I could take the disability leave and my work was amazing with that but I was like no I don't want to not work. I want to work. I want to be able to get up and try to live life still normally as much as I can. If I can get up and go to work, I wanna do that, and they were so great about that.
I work at a pediatrics office. I work at the front so it was a little scary thinking that here I do work in a pediatrics office and there's a lot of sickness going on, but it was nice because I didn't have to work with the patients face to face. My work was allowing me to do more paperwork, phone calls, a lot of that, away from patients so that I wouldn't get sick.
How was the financial aspect of dealing with treatment?
I'm still paying medical bills and my insurance covered a ton of it, thank goodness for insurance but I'm still trying to pay medical bills to this day. That's why I still wanted to work because I wanted to make that full amount instead of a certain percentage that I would only get if I took the disability. I knew that I needed to do that - I still had rent to pay for and electric bills, like bills are still on top of the medical bills so I need to still work. I felt like if I was doing that I was going to be okay.
Any advice or tips on the financial aspect?
I know that hopefully wherever you are getting treatment or people around you can offer organizations or people can help you out with fundraisers and doing any of that to raise money and help out. I do wish that I had done some type of more fundraising when I was going through treatment to help these bills, but it was hard for me to do because my mind was just so focused on other things.
Luckily I had my parents there who have helped me out anyway and I still am very thankful for my insurance. They did help a lot. When I did through egg freezing, I was able to go through organizations. So just looking for fundraisers and donations and anything like that around your area, hopefully they can help out in some way.
8. Fertility & Egg-freezing
What were you thinking about fertility?
The day of my first appointment with my oncologist she had brought up this “to do list” before I start treatment. On there was the fertility and she said with my cancer and the treatment that I'm going through, I would only have a 4% chance of infertility but I didn't even want to take that chance because I'd make it very clear in my future I want to have a lot of kids and I want to have a family. I didn't really want to take any percentage so she gave me all the information, I went right over to fertility center and they were able to help me.
It was a very quick process, two-week process, it was blood work every day. Then it was lot of hormonal shots that I had to give myself. That was a whole process itself, and that was even before I even started treatment. So I had to go through all that and they were able to retrieve 26 eggs to freeze. It's just good to know that, okay I have those in case I get a second type of cancer before I'm able to have kids because I'm so young.
Any tips to anyone else considering freezing their eggs?
If you go to a fertility center that has the exact same organizations that will help pay, I would definitely go for it if you can get help with the costs. I knew that I was very lucky that I had people who were helping out with the cost, so, I was going with it and I was able to do it and I did feel much better.
You most likely don't need to do it but I just didn't want to put any percentage of infertility in my mind while I'm trying to go through treatment. I just knew, okay this is the time, I'm going to do it and I was lucky to have a lot of help in the cost.
9. Last Message & Survivorship
Any last advice in general?
Being diagnosed with cancer is definitely a scary thought and it's a very scary process, you don't really know what you're in for but you do have a lot of people there for you and just stay strong. I think the attitude of it all through the whole process definitely helps a lot. Truly feel your feelings while going through everything, don't hold anything in. Just know the positivity really does help and it makes a huge difference through the whole treatment process.
Survivorship can be something you have to learn and figure out
As soon as you finish treatment you're not just done. I mean there's so many things that you have to go through even after that and I think a lot of people who haven't gone through cancer don't realize that, that okay even though this is amazing that person is in remission, or they're cancer free, they’re still going through so much and they still need that support.