Breast Cancer Diagnosis: Ricarda Henkel on Treatment and Living with the Disease

After my studies, I was just looking for a temporary job and ended up at DKMS. 17 years later, I'm still here—and for good reason. I quickly realized that the job is very fulfilling for me and I'm also impressed by the teamwork on site.

I was fortunate to be able to continue developing my job at DKMS. While I initially worked a bit in marketing and a bit in the press department, I quickly started saying: Okay, but the story only works with a strong photo. Now I'm part of the communications department, but mainly responsible for the entire audiovisual communication there.

This allowed me to incorporate my original passion for visual storytelling into my work. For me, it's the perfect combination—a job that makes sense while also allowing my visual creativity to flourish. It's truly the best of both worlds.

Breast cancer diagnosis: How Ricarda Henkel experienced the moment

A year and a half ago, you received the diagnosis of breast cancer yourself. How did you experience that moment and what went through your mind?

Last year, I was soaping myself in the shower and suddenly had this feeling that there's a lump. I'm not prone to hysteria at all, I'm someone who always stays calm first. In this case, it was a real feeling of: No, there's really something.

After I got out of the shower, I immediately took my phone and called my gynecologist. I told her that I discovered a lump that is so clearly noticeable that I'm sure something is wrong. She scheduled me for a breast ultrasound that same day. Even though the ultrasound did not allow for a definitive diagnosis, the palpable lump was clearly visible.

From that point on, everything happened very quickly: A biopsy and a mammogram followed to find out exactly what's behind the lump. Unfortunately, as is often heard in such cases, there were some communicative errors along the way. The first call I received was vague – I was told it wasn't clear, but the lump needed to be surgically removed. I was then referred to a clinic.

When I arrived there, the doctor who treated me took a look at my records and asked me directly: ‘Excuse me, could you tell me again why you are here?’ She then turned the screen towards me and said: ‘As you can see here and as it is clearly marked, it is a malignant tumor. At that point, the tumor was already five by six centimeters in size. Since it was deep inside and I have a relatively large bust, it took so long for me to notice it.

Despite your many years of experience with DKMS – were there aspects of cancer treatment that surprised you as a patient?

Well, I'm surprised at how much one has to go through. This is something I theoretically know from my job, of course. But the moment someone stands in front of you and gives you a checklist and says we have to act very, very quickly because the tumor is very large, you become aware of the scope in a different way.

Within five days, I had multiple appointments every day. Appointments that one simply has to keep. And at the end of the five days, it was very clear: It is breast cancer. It was especially this abundance of things that have to be done.

From the outside, it often seems very superficial, and that's perfectly fine. No one should have to deal too much with the process of cancer therapy before it is really necessary. It's enough to deal with it when the diagnosis is actually made.

Nevertheless, I noticed that even I – although I have been working with patients for a long time and often accompany them for months – ultimately only had a superficial impression of what it really means.

Living with breast cancer: Why therapy becomes a full-time job

Suddenly you realize: Being sick is a full-time job. Daily check-ups, countless appointments, endless forms to fill out, and constant decisions to be made. There's no fixed plan you can just follow, and often you're left alone with uncertainties. I didn't expect this constant uncertainty.

I've had these moments over and over where I didn't know what to do next. Who I should turn to. Where I needed to go. And how many times I've called friends and said – we need to talk this through now, help me make decisions.

That actually surprised me. I thought you'd be prepared differently. But in the end, you aren't.Compared to others affected, I was probably still better prepared, but not as much as I naively imagined.

Breast cancer therapy: Chemotherapy, surgery, and first steps

What did your treatment plan look like and how did you experience the first steps on this path?

We had to start right away with the full program. I was told that it is a very fast-growing and malignant tumor. That meant I had to undergo chemotherapy, surgery, and radiation.

Interestingly, you just function in that moment. You get a plan and you work through the plan and you function.That's actually the only thing you have in front of you and you're already totally exhausted from it. I'm doing this step by step. That was my feeling.

There were two weeks between the final diagnosis and chemo for me. That's a relatively short period. You get thrown into it. I started my chemo in April 2023. A total of 16 sessions. It's hard to describe what it's like. Everyone reacts differently to chemotherapy, and I think you can imagine that this experience can be very stressful. Still, compared to many stories I know from my professional environment, I was lucky. My experiences were less severe than I had originally feared.

Dealing with breast cancer: Which strategies really help

What strategies have you developed to cope with this situation? What helped you particularly to draw strength?

Many things happen without you having previously laid them out as a strategy. Over time, I realized that this is apparently something I manifested for myself, and somehow it gave me a good feeling.

When I was told that I have breast cancer, there was no moment when I cried, not until today. There are moments that touch you and you have tears in your eyes because you've overcome the next hurdle, for example. But my first reaction to the diagnosis was surprisingly rational.

I said to the doctor: 'I just read that one in eight women will develop breast cancer in their lifetime.' She just looked at me and asked: 'Did you understand what I just told you?' I replied: 'Yes, I am one of those women.'

Maybe it’s because I’ve been dealing with cancer professionally for 17 years. This has taken some of the taboo and terror away from the word 'cancer.' I don’t want to trivialize the disease at all – not at all. But I immediately thought realistically: 'Okay, others have managed it too, so I can do it.'

An important point for me is also that I decided to deal with the disease in an incredibly open way. This also characterizes a sentence that a friend said to me on the first day of the exam:“From now on, what counts is that you have to consider what you need. You tell us what you need.”

Finding strength despite breast cancer: exercise, environment, and mental strength

The sentence accompanied me the whole time because I don’t know that myself, thinking – what do I actually need now? What it implies, after all, is to put yourself first or maybe to realize – this is getting too much for me, what do I need now to feel better?

Right at the beginning, I decided for myself: exercise will be a key factor for my well-being. As long as I can, I will move every day. And indeed, during the entire chemotherapy, I only had to do without it one day because it just wasn’t possible. Otherwise, I was outside every day, always with someone at my side – and that carried me through the whole time: my environment.

I also decided — and this is contradictory to journalism, we actually tend to want to know everything exactly — that I won’t google anything. I didn’t even want to google my tumor or the therapy. Instead, I gave my environment 'Google tasks', such as: 'What diet supports chemotherapy?' They then sent me small PDF summaries, which helped me.

In the end, it was letting go that was one of the biggest challenges for me. I'm a planner, but being controlled by others in this situation and not knowing exactly what was going to happen next was a real challenge. Learning to tackle things bit by bit helped me enormously. Focusing, getting things done, and staying flexible.

Support for Breast Cancer: Why Openness is So Important

How did you involve your environment and what experiences did you have?

The only thing that really worried me at first was the thought that I would be alone and have to go this route alone. But on the first day I made my diagnosis public, a group of friends came together who have been actively by my side ever since.

There was no doctor's appointment that I had to go to alone, unless I wanted to. They accompanied me to every appointment, supported me, and helped me cope. After every chemo session, there was always someone there to take me home. There was never a moment when I felt lonely – and I think that was a very decisive factor.

The moment you feel lonely and alone, I believe it can mentally drag you down massively, and that naturally also affects the overall feeling of your body and the healing process.I am very lucky that my friends and colleagues have supported me from the beginning.

As a result, it was always a very open topic in the professional context, so I said from the start – Okay, I want us to talk about it, I communicate it openly and I communicate it to everyone, whether it's my supervisor, an intern, or the HR department, because I think if we can't talk about cancer in a cancer organization, then we're wrong, and that's also a point that helped me.

Hair Loss in Cancer: Coping with Change and Visibility

I lost my hair two and a half weeks after the first chemotherapy. When I noticed it, I first went to the hairdresser and had it cut shorter. I then told my friends, okay, can we meet this week and shave it all off?

I arranged to meet two friends on a Wednesday. The second chemo was scheduled for the following Thursday. On Wednesday morning, I got up and – I was surprised – there were really thick clumps of hair on the pillow.That feeling in the evening when the girls came and we cut everything down and then shaved it off, that was a relief.

I looked in the mirror and I felt so freed from this weird leftover I had on my head. While my friends cried, I laughed and kept saying: ‘It's okay, really, it's okay.’ I had prepared with wigs and scarves beforehand, but in the end, I wore none of them.

I decided that I feel most comfortable when I accept the situation as it is. If someone couldn't handle it, they should just look away – but for me, it was much easier to deal with it openly. The loss of hair brings a special visibility with it. Before or now, when the hair is growing back, it's not such an issue, it's forgotten. If someone doesn't look sick, they're not sick.

But the hair – that makes the illness so obvious to others. This visibility can cause a certain unease in others, and I felt that even with friends and colleagues. Through my open communication, I quickly broke down this barrier.

From day one, I also told my family that we can't keep quiet about this. I told my sister from the beginning: ‘It's important that you ask me how I'm doing, or how my day was. I can't always tell you everything on my own, so you need to help me.’

And they have stuck to it to this day. It was very important to me that you don't sit at the table and there is this elephant in the room. It surprised me how clearly I could suddenly express things without thinking about it. When my sister asked during our first conversation what she could do, even though she's so far away, I spontaneously replied: 'Get in touch regularly and ask about me.'

I can't always muster the energy to pick up the phone myself.' I was amazed at how easily I could express clear needs and demand what was always very difficult for me. But it helped all of us. Many people, friends and family, always said that one feels so helpless and powerless because they can't do anything except give me the feeling that we are by your side.

The moment they could give themselves a task, everyone felt better. It's interesting how we humans often have the urge to become active in crisis situations. Even small tasks can give us the feeling that we can manage and control the situation better.

BRCA1 and Breast Cancer: How Genetic Factors Influence Decisions

What are your next steps and what does the end of therapy mean for you personally?

My chemotherapy ended in October last year. Since I had a triple-negative tumor and am relatively young at 44, it was suspected that my breast cancer might be genetic. For this reason, I was tested for genetic markers, and unfortunately, it turned out that I have the BRCA1 gene defect - the same one that Angelina Jolie made known.

Because of this, I faced the big question of whether to have the rest of the tumor removed at the end or to opt for a mastectomy, i.e., breast removal. And if I choose that, should I also remove the healthy breast, or trust that the cancer won't come there.

The moment you are explained how high the likelihood is that you will get it, with my age, with my gene, with the size of the tumor, the decision was clear for me. In November, I decided to have a bilateral mastectomy. Fortunately, the surgery was able to preserve the skin and nipples, and an expander was immediately inserted.

I always jokingly say that I currently have a 'transition silicone.' The expander is placed under the skin and can be gradually filled with saline solution through a valve to slowly stretch the skin to the desired size. This is especially important when a breast-conserving operation – as in my case – is not possible, and implants cannot be immediately inserted because I also received radiation therapy.

In February, I completed more than six weeks of radiation therapy and subsequently started immunotherapy with nine units. I finished that at the end of August. Every small step you can check off is a huge success, and I am incredibly happy about these.

Since March of this year, I have also been taking a medication therapy in pill form that specifically targets the BRCA1 gene and is supposed to reduce the risk of relapse. This therapy will continue until March next year. Another big step is ahead of me at the end of November: the final breast reconstruction. This is an extremely important moment for me, which will still take place this year.

Life after breast cancer: end of therapy, follow-up care, and new perspectives

I am now happy that we can get this surgery done this year because it gives me the feeling that I can leave this behind in 2024 and maybe start 2025 feeling a bit freer. It feels like the normality that I have missed for so long is slowly returning to my life.

This is currently the last major step on my journey. After that, follow-up care will begin, and of course, the topic of cancer will accompany me throughout my life. It remains a part of me and will always be present. But the feeling of being controlled by it will diminish. I can take more control of my life again and focus on shaping the future at my own pace.