Gorlin-Goltz syndrome is a rare, hereditary disease. Those affected develop numerous white skin tumors, known as basal cell carcinomas, particularly between the ages of 20 and 30. Jessica Weiner (39) from Hanover is one of them. To mark World Cancer Day on February 4, she tells her story. She wants to encourage other cancer sufferers, including those who, like her, suffer from a rare disease.

Jessica Weiner has been a patient at Hannover Medical School (MHH) since 2016. She was diagnosed with Gorlin-Goltz syndrome at the beginning of 2010 during an inpatient stay at Göttingen University Hospital. She had previously had a basal cell carcinoma removed on an outpatient basis. Due to several suspicious spots, she was admitted to the University Hospital as an inpatient. "The diagnosis was followed by several surgical procedures. I stopped counting at 200," says Weiner. "Then there were radiation therapies, immunotherapies and treatments with a cream." Currently, the treatment is based on tablet therapy. As the disease manifests itself in the form of recurring basal cell carcinomas, she has to have regular skin screenings. "I can't remember a single check-up where no new basal cell carcinomas were found," says the 39-year-old.

She never wanted pity

The disease has changed Jessica Weiner's life. Both privately and professionally, her plans have been turned upside down. "I am subject to constant visits to the physician, can no longer go to work normally and have been receiving a full disability pension for over 10 years. And I will never be able to have children of my own," says Jessica Weiner. She has lost some friends as a result of the diagnosis, but at the same time has met some amazing people over the years. Despite the illness, she always looked ahead: "What I definitely never wanted was pity," says Weiner. "Rather words of encouragement and confidence". She is aware that this is not always easy for outsiders. "People have seen the difficult course of the disease. Some people had difficulties and didn't know how to deal with me. In the beginning, my hair was shaved off every three months and, of course, the bandages from the operations were visible," she reports.

Her tip: exchange and share experiences

Family and friends gave her strength and support. "Especially my parents and my best friend, as well as my husband, who has been by my side for eight years," says Jessica Weiner. But self-help groups have also helped her. Be it online in the Facebook group "Diagnosis skin cancer - we won't leave you alone" or in the patient organization "Melanom Info Deutschland", where she is now an honorary board member. Together with the MHH Skin Tumor Center, Jessica Weiner has founded her own self-help group for skin cancer sufferers and their relatives: "Yoko Selbsthilfegruppe Hautkrebs Hannover". "You don't have to cope with the disease alone. I would advise everyone to always look for like-minded people to talk to and share experiences." Jessica Weiner now knows four other people with Gorlin-Goltz syndrome, two of whom she talks to regularly. "That's good for me, because only people who are affected themselves can really understand you."

Volunteering has become a big part of the 39-year-old's life. "Through my work in the self-help group - online, but also on site - I realized that the patient perspective is missing in so many areas," says Weiner. She has therefore been a member of the Patient Advisory Board of the Comprehensive Cancer Center (CCC ) at MHH since mid-2023 and was elected as its spokesperson. "By involving cancer patients in a committee that is taken seriously, I hope to see improvements in care, but also in research."

To switch off from the hustle and bustle of everyday life, she likes to listen to loud music, podcasts, read a book, play on her Nintendo Switch or simply build Lego models. "I also like to go to my best friend and her children for a break," she concludes.

Helpful address:

• Skin Tumor Center of the MHH
• Yoko self-help group for skin cancer in Hanover
• Melanoma Info Germany
• Facebook self-help group "Diagnosis skin cancer - We won't leave you alone"
• SHG-GGS - Self-help group for people with Gorlin-Goltz syndrome

Text and interview: Maike Isfort/ MHH