Mila's story
Mila Rundic was diagnosed with Hodgkin lymphoma in September 2022 when she was 19 years old. She tells about the impact of her cancer on her formative years, and offers advice to young cancer patients, as well as those close to them.
Looking back, I had several symptoms, but they weren’t pronounced enough for me to think much of them at the time or to piece them together. I could find an explanation for everything. Even when I finally did go to the doctor, I would talk myself down by attributing my symptoms to different reasons, like not sleeping enough.
I’d just started my first year studying law at Durham University in September 2021, when I began to feel something wasn’t right. Life at university, especially the first year, can be hectic as everything seems new and exciting. This is why it proved tricky for me to notice my symptoms and take them seriously. Like many other university students, I got what appeared to be ‘freshers’ flu’. I rested for a bit but then pushed on thinking it would clear up and go away. For others this was the case, but not for me. For the following months I suffered on and off with symptoms like coughs and fevers which became more and more severe and disruptive. My condition worsened, culminating with an A&E admission in December where doctors determined I had multiple chest infections and hand foot and mouth disease, which is more common in younger children.
Always go and get your symptoms checked out – and don’t feel like you’re wasting anyone’s time. It’s so important that young adults know their symptoms are valid and they deserve to have them checked and taken seriously.
After my recovery from these infections over the break, I returned to university. There was also a lot of fatigue in the following period. I didn’t particularly question it, however, since the workload of law is high, and I was staying up late to complete work. I thought that the combination of not sleeping well, drinking lots of coffee and walking long distances daily explained why I felt so tired.
I was also having anxiety attacks caused by a feeling of breathlessness in my chest. I saw the GP who put them down to the stress of my course. If I'd have known about lymphoma symptoms, I could have pushed back and advocated for myself, but all I knew was something wasn’t right with my body. Little did I know that this ongoing illness, coughing and heavy breathing was being caused by many tumours in the lymph nodes located in my neck and chest, some of which were pushing on my windpipe. I went on to experience night sweats and itching over the summer but put these down to the heat.
I had a feeling in my chest like I couldn’t breathe, but the doctor dismissed it as anxiety with no further investigations and this discouraged me from following this up. If this happened now, I would track my symptoms persisting and go back prepared to speak up for myself. I would be confident going to see a healthcare professional promptly if something felt off.
Perhaps the most telling symptom was the lump in my neck, which looking back at photos and videos, was there months before me or anyone around me noticed. It grew steadily in size for several months. When it got particularly big, I experienced some shoulder pain, as well. I didn’t know that this lump was formed of many cancerous lymph nodes. If I’d noticed this lump earlier, I could have been diagnosed sooner.
Diagnosis
My rheumatologist examined me thoroughly for swollen glands that could indicate unexplained infections consistent with my autoimmune disease. She requested a few different ultrasounds, including of the neck. I was also given antibiotics. As she was on summer holiday at the time of my next appointment, I was seen by a different rheumatologist who advised me against going for the scan on the basis that the antibiotics had worked in reducing the swollen glands. Since the scan was already booked, however, I decided to go anyway. I’m so glad I did.
What my rheumatologist didn’t tell me when she booked the scans was that she felt something abnormal in my neck. As soon as the three doctors did the ultrasound, they seemed alarmed, telling me they could see a large number of enlarged nodes under the skin. I was completely clueless, asking “is that normal?” to which they simply replied “no” and asked to do an urgent needle biopsy straight away. Thanks to the thoroughness of my rheumatologist a PET/CT scan was already booked and, in the meantime, a second biopsy was done to confirm the results of the first, which they didn’t tell me anything about.
Soon after this, the rheumatologist who had tried to dissuade me from going to the ultrasound called me into his clinic to tell me that I had cancer. The multi-disciplinary team had found that I had Hodgkin Lymphoma, a type of blood cancer, from the tests done. I was in shock and just kept thinking this must be a mistake.
Treatment
Later that week, I saw my oncology team at University London College Hospitals (UCLH), who explained the type and stage of lymphoma and the different routes and treatment options I could have. As it was September, I was just preparing to go back to university, but they recommended I postpone my second year due to the intensity of the chemotherapy proposed.
I was also referred to a fertility clinic due to the damage the chemo can cause for ovaries. I had scans and multiple injections a day so I could have an egg collection and freeze my eggs. I had many months of intensive chemotherapy following the HD17 protocol that aims to avoid radiotherapy. I had a PET/CT scan midway and at the end of treatment. I entered remission in February 2023.
Finishing treatment
The idea of finishing treatment was quite daunting for me, especially at first, with the uncertainty of not knowing what was going to happen. There were a lot of emotions at once. I was remembering moments of treatment and the trauma. I was relieved too, of course, but I realised I’d been in survival mode for all these months, and it felt like I could see things differently. That change in perspective is a big thing for someone to deal with.
I didn’t feel like celebrating. It was as if I’d been spinning around for months and still was - only more slowly now. I still felt really fatigued and struggling with side effects from my chemo. I was grateful to be in remission but didn’t feel any great joy. I'd been left with many things to deal with.
Stepping into remission is also hard because you have that thought of reoccurrence - you’re hyper vigilant, there’s a lot of health anxiety. I get tired more easily; my energy levels are different. I have to use crutches to support myself walking due to chronic pain. I’m constantly thinking about things I need to discuss at regular follow-up appointments – things like medication and symptoms - so it’s not like the end of the journey at all. There’s still a long road ahead.
It’s a lot to deal with and life doesn’t go back to ‘normal’. Every step of this journey has been a change to adjust to, and ending treatment is just another step in this process.
Being a teenager with cancer
Being a teenager is such a formative time in your life, but it’s extra challenging if you’re dealing with a cancer diagnosis. It was so hard receiving the diagnosis at first, because there are just so many unknowns throughout the whole journey. You just don’t know what the future will hold, you don’t even know what the next week or day will hold sometimes.
I thought, ‘How on earth am I going to deal with this?’ It was just a completely desperate time. Everything I was going through was scary and new. The treatment, going to the hospital, I was just really upset. It was about taking each day as it came. It’s very challenging for your mental health.
It’s also so important to keep doing things: still get up every day and live, because life doesn’t stop. At first, for me it felt like everything paused. Even though this is true in some areas like education, you still want to connect with friends, do the things you enjoyed doing before.
I’ve really struggled with a lot of very specific side effects from chemo ranging in severity, such as nausea, fatigue, neutropenic sepsis and I’m not sure how much peers my age, who haven't had a direct connection to cancer, can understand that. It’s difficult because it’s such a unique experience going through treatment, and it becomes your whole life at the time. You’re grieving who you were and your life before cancer.
The way I’ve changed through this experience and my perspective on things and the things that I can do now, is also a bit alienating. It’s a big contrast. At uni, I was going out, socialising, attending lots of events but now, that couldn’t be more different.
What I want people to know
Cancer is an incredibly isolating experience, both physically and emotionally, so it’s important that people talk to young patients and let them know they care. It’s important for the patient to know that people want to hear about it as it’s this huge thing that they’re going through and want to know that the support is there.
See how much someone wants to share and be confident with it. Sometimes, as a patient, it’s a bit daunting to bring up yourself, as sometimes you think, ‘Oh, I don’t want to be a burden’, or ‘These are heavy subjects and emotions for young people’. So, just by asking ‘How are you?’ or ‘How’s treatment going?’, you can tell how much someone wants to share. No one is going to be offended knowing you’re trying, but they might be if they think you’re not.
Be brave and try to ask. Just acknowledge what’s going on and if you’re scared or don’t know what to say, just have an honest conversation.
My advice to other young cancer patients
Be really open with your medical team about what symptoms you’re having and effects from your treatment because that's how they can best support you. Know they’re there to support you and be open about how you’re feeling and how things are affecting you and if you think there’s something that can help, just say.
Try to reach out to other people who are going through something similar. In the toughest moments of treatment, I think what helped me the most was people being so open about their own experiences and how they felt. Speaking to them helped me have more compassion for myself. It’s so important to do that and remember there’s no right or wrong way to feel or do things. Remember, if you can open up, it’s a big relief as you don’t have to hold it all in.
Cancer is an incredibly isolating experience, both physically and emotionally, so it’s important that people talk to young patients and let them know they care. It’s important for the patient to know that people want to hear about it as it’s this huge thing that they’re going through and want to know that the support is there.
It’s also so important to keep doing things: still get up every day and live, because life doesn’t stop. At first, for me it felt like everything paused. Even though this is true in some areas like education, you still want to connect with friends, do the things you enjoyed doing before.
When I was diagnosed, I felt like none of my hobbies or interests were important anymore. You’re dealing with this huge thing, which completely takes over your life, so how can they be important? Well, because you’re still you.
Obviously, there’s restrictions on what you can do, and it very much depends on your side effects but see how you’re feeling and keep trying to do things, even if they look different and they’re harder than before. It’s about taking some of that power back. You deserve to keep doing the things you love and looking after yourself, even if you need help with this.
If you’re worried about your health
Always go and get your symptoms checked out – and don’t feel like you’re wasting anyone’s time. It’s so important that young adults know their symptoms are valid and they deserve to have them checked and taken seriously. Equally, if one doctor doesn’t listen to you, don't give up or let this discourage you. If you feel something is wrong, then pursue it.
I had a feeling in my chest like I couldn’t breathe, but the doctor dismissed it as anxiety with no further investigations and this discouraged me from following this up. If this happened now, I would track my symptoms persisting and go back prepared to speak up for myself. I would be confident going to see a healthcare professional promptly if something felt off.
Why I support Teens and Young Adults with Cancer (TYAC)
Having charities like TYAC advocating for and supporting young patients, as well as funding research, is invaluable. It’s empowering to know that these charities exist. It makes you feel like your journey is a part of something bigger. There are people working to support you, willing to help you, no matter what stage of the journey you are. It’s really validating to your own experience. Seeing other people’s stories really helps.
