My Life with Breast Cancer

I was lucky enough to always be able to develop my job at DKMS further. While at the beginning I 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 am part of the communications department, but there I am mainly responsible for the complete audiovisual communication.

So I was able to incorporate my original passion for visual storytelling into my work. For me, it's the perfect combination – a job that makes sense, and at the same time the opportunity to fully express my visual creativity. It really is the best of both worlds.

A year and a half ago you were diagnosed with breast cancer yourself. How did you experience this moment and what went through your mind?

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

My gynecologist called me in on the same day to do a breast ultrasound

After I got out of the shower, I immediately took my phone and called my gynecologist. I told her that I had discovered a lump that was so clearly palpable that I was sure something was wrong. She called me in on the same day to do a breast ultrasound. Although the ultrasound did not allow for a definitive diagnosis, the palpable lump was clearly visible.

From that point on, everything went very quickly: A biopsy and a mammography followed to find out what exactly was behind the lump. Unfortunately, as you often hear in such cases, there were some communication errors along the way. The first call I received was vague - they told me it was not 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 had taken 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. The tumor was already five by six centimeters at that point. 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 at 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. It's something I know in theory from my job, of course. But the moment when 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 several appointments every day. Appointments that you just have to attend. And at the end of the five days, it was very clear: It's breast cancer. It was especially this abundance of things that you have to do.

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

Still, 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.

There is no fixed plan that you can simply follow, and often you are left alone with uncertainties.

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

I've had these moments over and over again where I didn't know what to do next. Who to turn to. Where to go. And how often I've called friends and said - we need to discuss this now, help me make decisions.

This really surprised me. I thought one would be prepared differently. In the end, you're not.Compared to others affected, I was probably still better prepared, but not as much as I naively imagined.

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

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

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

Everyone reacts differently to chemotherapy, and I think it's easy to imagine that this experience can be very stressful.

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

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

Many things happen without you having preconceived strategies. Over time, I've realized that this is apparently something I've manifested for myself and that somehow gave me a good feeling.

When I was told that I have breast cancer, there wasn't a moment when I cried, even to this day. 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, 'Have you understood what I just told you?' I replied, 'Yes, I am one of those women.'

Perhaps it's because I've been professionally dealing with the topic of cancer for 17 years. This has taken some of the taboo and terror out of the word 'cancer.' I don't mean to trivialize the disease - not at all. But I immediately thought realistically: 'Okay, others have managed it, then I can do it too.'

An important point for me is also that I decided to deal with the illness incredibly openly. This is also shaped by a sentence a friend said to me on the first day of monitoring:"From now on, it counts that you have to think about what you need. You tell us what you need."

Right at the beginning I decided for myself: Exercise will be a key factor for my well-being.

The sentence has accompanied me the whole time because I don't know this myself, that I think - what do I actually need now? What it implies is putting yourself first or perhaps also realizing - this is getting too much for me, what do I need now to feel better?

At the very 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 had to forego it only one day because it just didn't work. Otherwise, I was outside every day, always with someone by my side - and that carried me through the whole time: my environment.

I gave my environment 'Google tasks', like: 'Which diet supports chemotherapy?'

I also decided - and this is contradictory to journalism, we tend to want to know everything exactly - that I will not google anything. I didn't even want to google my tumor or the therapy. Instead, I gave my environment 'Google tasks', like: 'Which 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 am a planning person, but in this situation to be externally determined and not to know exactly how it will continue was a real challenge. Learning to tackle things step by step helped me immensely. Concentrating, working through, and remaining flexible.

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 path alone. But already on the first day I made my diagnosis public, a group of friends came together who have been actively by my side since then.

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 caught me. After each chemo session, there was always someone there who took me home. There was not a moment when I felt lonely - and I believe that was a very decisive factor.

At the moment when you feel lonely and alone, I think it can mentally drag you down massively and that of course also affects the overall body feeling and healing.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 a professional context, so I said from the beginning - Okay, I want us to talk about it, I communicate it openly and I communicate it to everyone, whether it's my supervisor, a working student, or even the HR department, because I think if we can't talk about cancer in a cancer organization, then we're doing something wrong and that too is a point that has helped me.

No one knows how it feels when you lose your hair, I didn't know that either.

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 the hair completely?

For a Wednesday I then arranged to meet two girlfriends. The second chemo was scheduled for the following Thursday. On Wednesday morning I got up and - I was also surprised - there were really thick hair tufts 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 felt so liberated from this strange rest I had on my head. While my friends cried, I laughed and kept saying, 'It's okay, really, it's okay.' I had prepared for it in advance with wigs and scarves, but in the end, I didn't wear any of it.

I have decided that I feel most comfortable accepting the situation as it is. If someone couldn't handle it, they should just look away, but for me it was much easier to openly deal with it. The loss of hair brings a certain visibility. 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 are not sick.

But the hair – that makes the illness so obvious to others. This visibility can cause some discomfort in others, and I have felt that myself among friends and colleagues. Through my open communication, I quickly broke down this barrier.

Even with my family, I have said from day one that we can't keep quiet about this. I told my sister from the beginning: 'It's important that you ask me how I am or how my day was. I can't always tell everything on my own, so you have to help me.'

And they have continued to do so to this day. It was very important to me that we didn't sit at the table with this elephant in the room. I was surprised myself at how clearly I could suddenly articulate things without thinking about it. When my sister asked during our first conversation what she could do, even though she was so far away, I spontaneously replied: 'Keep in touch regularly and ask.

I can't always muster the energy to pick up the phone myself.' I was surprised at how easily it came to me to clearly express needs and ask for what I otherwise always found very difficult. But it helped all of us. Many people, friends, and family always said that they felt helpless and powerless because they couldn't do anything except give me the feeling that we're on your side.

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

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

My chemotherapy ended last October. Since I had a triple-negative tumor and am relatively young at 44 years old, 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 famous at the time.

For this reason, I then faced the big question of whether to have the remaining tumor removed or to opt for a mastectomy, i.e., breast removal? And if I decide to do that, should I also have the healthy breast removed, or trust that the cancer won't come there.

Unfortunately, it turned out that I have the BRCA1 gene defect - the same one that Angelina Jolie made famous back then.

The moment you are told how high the probability 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 on a bilateral mastectomy. Fortunately, the operation could be performed skin- and nipple-sparing, 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 it can be gradually filled with saline solution via a valve to slowly stretch the skin to the desired size. This is especially important when a breast-conserving operation – like in my case – is not possible, and implants cannot be inserted immediately because I have also received radiation.

By February, I had more than six weeks of radiation behind me, and subsequently, an immunotherapy with nine units was started. I completed that at the end of August. Every small step you can tick off is a huge success, and I'm incredibly happy about these.

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

I'm glad we could manage this surgery this year, because it gives me the feeling that I can leave it behind in 2024 and maybe in 2025 I can move on a bit more freely. It feels like the normalcy I've missed for so long is slowly returning to my life.

Of course, the topic of cancer will accompany me for a lifetime.

This is currently the last big step on my journey. After that comes the aftercare, and of course, the topic of cancer will accompany me for a lifetime. It remains a part of me and will always be present. But the feeling of being controlled by others will diminish. I can take more control over my life again and focus on shaping the future at my own pace.