Caroline Rytter was diagnosed with Hodgkin's lymphoma at 19 years old – what is Hodgkin’s lymphoma?

Caroline Rytter was diagnosed with Hodgkin's lymphoma at 19 years old – what is Hodgkin’s lymphoma?

Hodgkin's lymphoma or Hodgkin’s disease is also known as lymphatic cancer, which was the disease that Caroline Rytter was diagnosed with in 2014 at just 19 years old. Here is a description of the disease based on her disease course.

Surrounded by parties, good music and happy days at a festival in 2014, Caroline Rytter noticed that she had a lump near her collarbone. However, she had no pain in the lump and did therefore not think about it initially, as she continued to party with her friends. 

Two months later, she went to see a doctor to get a medical certificate for her driver’s license. She asked the doctor to take a closer look at her lump while she was there. The doctor asked if she had been ill lately. “I replied that I had not. I mean yes, I had been to a festival and you always get a bit ill after that,” says Caroline Rytter while laughing.


Virtually no symptoms

With the exception of the lymph node that Caroline Rytter had at her collarbone, she experienced none of the symptoms that are normally associated with Hodgkin's lymphoma.

“I think I had a hard time understanding that I had not experienced any of the things they asked about. They asked about weight loss, itchy skin, excessive sweating at night and several other things that may be signs of cancer. I had not experienced any of them.”

She says: “I had been a bit tired because I had mostly stayed home without a job after graduating from upper secondary school, but I never needed to take an afternoon nap or anything like that.”


"Then I will lose all of my hair"

Caroline Rytter was sent to a specialist where she had samples taken and went through an ultrasound scanning, which she would receive the results of a week later. She went to both appointments alone as she did not in her wildest imagination anticipate what was waiting for her.

She says: “My world collapsed completely when he said that he had a presumption that there was cancer in the lump.”

“Then I will lose my hair.”

Caroline with a smile on her face, despite losing her hair. Photo: Private.


Why me?

“Oftentimes, I think you hear that cancer is associated with lifestyle diseases. But I am young - of course, you can go off the rails on all sorts of parameters, but I never did, so why me? What is it that makes me different?” Caroline Rytter asks frustrated. 

The causes of Hodgkin's lymphoma are not yet known, as is the case with other types of cancer. At present, there are only theories about what can cause the disease. Some researchers suspect that glandular fever and immunodeficiencies may be contributory to the disease, but there is no scientific evidence to support this yet. 

She says: “It would have been easier for me if there was a reason and an explanation for why it happened. That would have made more sense.”


Good chances of recovery

If Hodgkin's lymphoma is not treated, the disease is fatal. The sooner the disease is detected, the better the chances are of the patient surviving. 

There are four different stages of Hodgkin's lymphoma. If the disease is detected in the early stages, there is more than a 90 percent chance of being cured. If the disease is detected in the later stages, the cure rate is between 70 and 80 percent.


Illustration of the four stages. Photo: Danmarks Sundhedspanel


  • Stage 1:The disease is only detected in a single lymph node region.
  • Stage 2:The disease affects several lymph node regions, but all of the affected regions are on the same side of the diaphragm. That is to say that the affected lymph nodes are either in the upper part or in the lower part of the body.
  • Stage 3:The disease affects several lymph node regions on both sides of the diaphragm (both in the upper AND lower part of the body). However, the cancer has not spread to other organs besides the lymphatic system or spleen.
  • Stage 4:The disease is detected outside of the spleen or lymphatic system, e.g. in the lungs, liver or bone marrow.


Different treatment for different cases

Already a few days after she had received her results from the specialist, Caroline Rytter underwent surgery at Copenhagen University Hospital in which her lump was removed. It turned out that what the doctors and Caroline Rytter had thought was stage 1 lymphoma was actually stage 2 lymphoma. After the surgery, she was scanned again in which three additional nodes were found. One in her chest cavity and one on each side of her neck.

After detecting the additional nodes, the doctors decided not to remove them through surgery like they had done with the first one. Besides surgery, chemotherapy and radiation can also be used to treatHodgkin's lymphoma, which was what Caroline Rytter was subjected to shortly after her surgery. This was intended to cure the three other nodes. However, it was exactly the type of treatment she had feared as it meant that she would lose her hair. 

She was told that she would lose her hair after two months. In spite of this, she was already balding so much after one month that she decided to shave off the remains. Caroline Rytter and her mother agreed that she looked more ill with the little hair she had left, than she would if they shaved it off completely.

She says: “I cried the entire time while my mother shaved it off. I did not want to go outside or look at myself in the mirror the first day after we had done it. It looked completely wrong and by then, I really felt that I looked sick.”


Friends were afraid to say something wrong

Young people rarely suffer from serious diseases and because of that, Caroline Rytter’s circle of friends also experienced some difficulty in figuring out how to act when their friend suddenly was diagnosed with cancer.

She says: “I only had one friend that I felt I could talk to about it. I think that my other friends had a very hard time dealing with it. It felt like they pulled themselves away from me because, they were afraid to say something wrong.” 

She says: “I felt that my life came to a standstill while everyone else were moving forward. Some of my friends were studying, others working, and I just sat at home and had nothing to do in my everyday life. I was planning to travel to France and work at a ski resort all winter, but that fell through. So I was lonely. I had many days, where I was sad.” 


In good health again

People who have suffered from Hodgkin's lymphoma can be happy about the fact that there is no indication of the disease returning if you have been fortunate enough to recover from the disease. This also applies to Caroline Rytter, who was told in the summer of 2018 that she no longer needed to have check-ups in connection with her cancer course. Following this, she wanted to do something to help other sick people. As a result, she began studying to become a medical technologist. However, she could not complete the education. She worked as an intern at a hospital in which she participated in the examinations of sick patients. When poor results occurred, she was often not allowed to tell the patients immediately.

She says: “All I was allowed to say was that the picture was of good quality. That for me was too awful to do, when I had been on the other side and knew that the patients really wanted an answer.”

Instead, she has now begun studying to become a laboratory technician at University College Copenhagen, where she also gets the opportunity to help other people.

Latest health news

All health news
It only takes 2 minutes.
Do you want to be able to join research projects?
Free and non-binding · more than 65.000 members
Yes, sign me up!
Maybe later
Health Panel

Become a part of Health Panel

The goal of Health Panel is to improve health through research, but we need your help to do so. You can help by signing up for Health Panel and thereby possibly become a participant in research projects. We will only contact you if your health profile is consistent with a current research project. All research projects are pre-approved by the respective  Independent Ethics Committees (IEC) or Institutional Review Boards (IRB).

Create Health Profile