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Patient Stories

Voice of Kidney Cancer – Julia Berger

Voice of Kidney Cancer – Julia Berger

On June 25th 2018, a 16cm malignant tumor was discovered by chance on my left kidney: I had just turned 47 years old. Our family had relocated from Los Angeles to Munich, Germany, just 10 months prior, and our life in Germany was still new to us: Our kids, 6, 9, and 11 at the time, were about to complete their first year of school here, and we had all been looking forward to an easier, more settled second year in our new home. 

What I remember most about the day my world fell apart, is not so much the shock and disbelief that came with the diagnosis, but the “Todesangst” (fear of death), that hit me immediately. My very first thought was of my children, of me having to leave them behind, and of them having to live a life without me. This fear has not let go of me ever since. I hate the fact that cancer has turned me into a fearful person. At the same time though, this fear drives my fight to stay alive: Giving up is not an option for me; I will not leave my family behind.

Things happened fast from there: One week later, the monster was fully removed with clear margins, even leaving the majority of my kidney intact.  I felt humongous relief wash over me after waking up from surgery to this news, immensely grateful to have been saved by my urologist.  The joy was not long-lived: Just a few days later, I found out that the tumor was classified as Stage 3a, and Grade 3, giving me a 30% chance of cancer recurrence. Intense fear rolled over me again: everything I was hearing felt like too much to bear. 

I was fortunately referred to a wonderful psycho-oncologist, who still helps me through the rollercoaster that is my cancer life now. More grounded and with a clearer head, I decided to take up the offer to participate in a double-blind clinical trial of adjuvant therapy with Ipilimumab/Nivolumab. I would not know whether I was receiving a placebo or the actual drug, but being able to play an active part in fighting the disease helped reduce my anxiety and made me feel more in control. In the following months I regained hope and confidence in my body. 

That hope was shattered again as, 6 months into the trial, a CT scan showed that the cancer had returned and rapidly spread to lymph nodes and liver.  Fear and anxiety returned stronger than ever, as I went through an extremely difficult 3-month period of limbo, waiting for next therapeutic steps to be figured out – biopsies were inconclusive, and the clinical trial initially refused to unblind my data and inform me whether I had received the immunotherapy drugs or not (I did).

During this period, I fell into a deep dark hole of depression, and my family – unable to help – suffered along with me.  It was then that I found my way into our KCCure online community.  Having cancer can be a very isolating and lonely place to be, that no one can truly understand, unless they walked in your shoes.  That is why patient support groups, such as the ones here at KCCure, are so invaluable.  You immediately feel like you are part of a welcoming community that just gets it, and that lets you feel all that you need to feel.  Kindred souls sitting there and nodding their heads, saying “I understand you, my friend.”

Since Immunotherapy had proven ineffective in my case, I started treatment with Cabozantinib, to which my body luckily responded strongly.  For the first 6 months, my scans showed shrinkage of all tumors, and every scan thereafter has pretty much shown stable disease. Slowly then, I was able to let myself relax and got released from the tight grip that fear and anxiety had on me. I began to LIVE with the disease, enjoying the present and everyday life with my family.  Together, we traveled extensively during the following summer and fall, and I learned that, for me, physical distance from my normal surroundings makes it easier to build mental distance from my disease.  Traveling turned out to be like therapy for me: I could fully let go of everything, and I even forgot that I was sick at all. Christmas was spent with family in Germany, and things were looking up.

Then the pandemic hit. At first I was strangely unaffected by it: In a way, it just felt like everyone around me was getting a small taste of what I had been feeling since my diagnosis.  But soon I realized that being a cancer patient during this pandemic raised a whole new type of fear and anxiety, not at all due to having to self-isolate together with my family for the past 12 months, but due to feeling misunderstood, invisible, and marginalized. First it was people complaining about masks and social distancing restrictions. Comment sections on newspaper articles and even friends’ comments on FB making me feel like cannon fodder, clumped together with the elderly, who “won’t live much longer anyway”. 

Then it was politicians and institutions not taking into account people in my situation. Schools being kept open without a plan nor the willingness to accommodate families who could not risk sending their children.  And finally the disastrous vaccination rollout in Germany.  Initially, advanced cancer patients were not included in any priority category, and even when later included in one, nobody seemed to have an idea what that actually meant in practice, and how and when I could be vaccinated. Repeatedly running into closed doors (about the vaccine, but also about the children’s schools) had taken a toll on me: Thankfully, my sister took over the insistent calling and lobbying for me, and – only due to her tireless advocacy and a doctor friend’s additional help –  I finally received my first shot 2 weeks ago.  So now it’s time to exhale again.

What have I learned on my cancer journey thus far?  I have learned that cancer is scarier than anything I could have ever imagined. That, for some of us, it can bring up lasting fears and anxieties of unknown proportions, and that it can pull you down into the deepest darkest hole. 

But I also learned that living with cancer is like a rollercoaster: even after the lowest low, there will be a way up again. After each difficult period, there will come better – even great – times again. There is still so much more life to be lived and enjoyed despite cancer. Laughter will return, happiness will return, and even some lightness. 

I have learned that cancer can be an utterly isolating and lonely place to be. That it can make you feel marginalized and forgotten by society.  But I also learned that we are not ever alone: Family, friends, doctors, advocates, fellow patients, all of whom we can lean and count on, are walking right beside us, rooting for us, believing in us, and fighting tooth and nail for our lives.

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