Have you been diagnosed with localized kidney cancer? KCCure has a new support community just for you.
The KCCure 1-2-3 group is a support community for those managing a diagnosis of stage 1, stage 2 or stage 3 kidney cancer.
Two thirds of patients will be diagnosed with localized kidney cancer – in other words, renal cell carcinoma in the kidney that has not spread into other organs. For almost all of these patients, the treatment will involve surgery to remove the cancer followed with close observation by their doctor.
Despite the fact that most kidney cancer patients fall into this category, few resources exist for them to learn about their disease and connect with others. Our research shows that kidney cancer patients – regardless of their stage – experience high degrees of anxiety following their diagnosis.
Caregivers of and patients with localized disease sometimes (not always) feel uncomfortable in kidney cancer communities where the majority of members are undergoing treatment or caring for patients with disease that has spread to other organs.
This can be due to a variety of reasons:
- While learning from patients with advanced disease is often helpful, sometimes these stories can add to anxiety about recurrence and cause distress;
- Patients and caregivers may feel guilt that their situation isn’t as serious as another member of the community;
- Localized disease patients and caregivers may feel like their problems aren’t worth sharing and may feel reluctant to seek out support.
To fill this gap, KCCure has created the 1-2-3 Kidney Cancer Support Community. We believe that these patients have unique needs; and sharing stories and providing information and support with one another can help combat feelings of isolation and fear.
Below are some frequently asked questions designed to clear up any confusion about this new group and how it intersects with our other communities.
If I’m not stage 4, does this mean that I can’t join other communities run by KCCure?
No. Our communities are designed to be inclusive and we encourage patients to join many groups. However, some patients and caregivers dealing with stage 1, 2 or 3 kidney cancer might find that broader groups are focused more on systemic therapy and treatments for stage 4 patients. If you’re a patient with localized disease and you’re already comfortable in another group, we’re glad that you’ve found the right place! This group is not meant to replace any other support groups that are available and working for you.
If I join the 1-2-3 group and have recurrent disease, will I be kicked out?
No. Our goal is never to exclude or kick anyone out of a community that’s meaningful and providing support. KCCure has patient ambassadors and leaders that work to ensure that communities provide safe support. If the conversation within the community begins to shift toward extensive discussions related to treatment for stage 4 disease, we may suggest or recommend that a patient with recurrent disease join and/or post in other communities – such as the KCCure Clear Cell Community – where they’ll find more people dealing with similar issues. But no one will be kicked out of a community unless they violate rules related to soliciting and selling products or are disrespectful to others.
How can I know which group is best for me?
If you’re newly diagnosed or new to KCCure, we can help you find the right place. Our research shows that most patients and caregivers belong to multiple groups for support! And we encourage that. If you want help finding the right group for you, contact Cindy Kornreich, Director of Online Patient Communities for information at Cindy@kccure.org.
You can learn about all of the KCCure Support Communities as well as other support groups available to you here!
