A conversation with Janna Ulrich of the Zurich BRCA self-help group, which is open to women all over Switzerland. She talks about what the group does, how you can become a member and when it makes sense to join a self-help group.
Janna Ulrich, what is the Zurich BRCA self-help group?
We are a self-help group for women with BRCA mutations. We are the only such group in Switzerland and are made up of around 40 women from all over the country. We meet online the first Tuesday of each month so that everyone can attend. We also have a WhatsApp group which is a taboo-free space where we can ask questions and always get an answer. Even though we’re all BRCA carriers, we all have a different story. We are often very emotional – it’s all allowed with us.
How do women usually find out that they’re BRCA carriers?
When a family member has been diagnosed – their grandmother, their mother, their aunt. In my own case, we did the test because I was diagnosed with breast cancer at age 35. That’s how we found out that my dad had the BRCA mutation and passed it on to me.
How did you find the self-help group?
My breast center recommended that I join the group. I didn’t want to at first. I assumed that it was a therapy group where everybody was negative most of the time and that the others would drag me down with all their depressing stories. As an upbeat person who responded well to cancer therapies I didn’t want to stir up any unnecessary fears in myself. Then in 2020 I just went one day and came out of it thinking: that was a wonderful, heartening exchange with like-minded people!
What did self-help change in you?
I found support. You have so many questions! Even women who have trouble opening up or speaking about it find support here – the WhatsApp chat enables both closeness and also distance when people need it.
How do you become a member?
Most women find us via the Zurich Self-Help Center (www.selbsthilfecenter.ch) or get referred to us by their breast center or the cancer league. Astrid Muff fields calls from BRCA carriers who have not been diagnosed with cancer and I speak to the women who have received a cancer diagnosis. After our initial conversation, we invite them to the WhatsApp group. Membership is free, and we work on an independent and voluntary basis.
What do self-help groups have to offer that conventional medical care doesn’t?
We have a lot of time to engage in conversation. I wouldn’t have ever wanted to ask doctors the questions I’ve asked in the group. The knowledge we have among us is so valuable, plus we can talk about our experiences around the clock. We share useful pointers, advice and experiences from our own personal point of view.
When does it make sense to join a self-help group?
As soon as you find out you have a BRCA mutation. I deeply admire the strength of the women who have to undergo prophylactic surgery even without a cancer diagnosis. It’s a major surgical procedure that takes around six hours! We talk about the different types of surgeries, about silicone, autologous fat, how your breasts feel post-op, how the scars look. There are so many questions – we share our knowledge and recommendations with one another. The group is a very, very valuable resource.
Contact: www.selbsthilfecenter.ch
