What is Radiation Cystitis?
Radiation Cystitis (also known as “RC”) is a rare and serious side effect that arises from anticancer radiation therapy for pelvic malignancies including prostate, rectal, endometrial and cervical cancers. Symptoms include hematuria (urinary bleeding) and other voiding symptoms such as urinary pain and incontinence.
Hemorrhagic cystitis is related and is often used synonymously with RC. Hemorrhagic cystitis refers to the same urinary symptoms as RC which may result from either anticancer radiation therapy and/or certain types of anticancer chemotherapy - so all radiation cystitis cases are hemorrhagic cystitis, but not all hemorrhagic cystitis cases are radiation cystitis. To reduce confusion, sometimes radiation cystitis is referred to as "radiation-induced hemorrhagic cystitis" or "radiation-related hemorrhagic cystitis".
No matter what you call it, patients with RC can often experience variations or flares of symptoms over time, potentially years after receiving radiation therapy. Serious cases of RC may be life threatening condition and there are no definitive treatments or cures for RC. Existing options are costly and limited. The condition represents a significant unmet medical need worldwide.
Radiation Cystitis & Public Health:
Despite a growing interest in RC by both the general public and medical communities, the condition remains under-researched.
At this time there is no approved cure available. RC patients and their families are in need of additional medical options and support. We are motivated to encourage and share any advances in the RC field that will have a positive impact on patient life.
Patient Registry
Additional resources are needed to advance RC understanding - including the development of new and larger RC patient registries. The RC Foundation highlights the Radiation Cystitis Patient Registry, which aggregates data on the health status of individuals with RC.
The goal is to create a resource to help doctors better recognize severe complications that arise long after pelvic radiation treatments. Researchers also use the Patient Registry to study RC treatments and outcomes and to design RC clinical trials.
The potential uses of this registry about RC (and cancer survivorship post-radiotherapy) include: improving the scientific understanding of RC, discovering trends and common needs of registry participants, describing the aggregate personal characteristics of patients within the registry, documenting registry patient medical histories, and contacting registry participants to inform them of new studies. This registry has been created and developed within the published guidance of the National Institute of Health Rare Diseases Registry Program (RaDaR) and is not affiliated with the RC foundation. As a reminder, review the registry instructions and disclosures before deciding to participation.
The form takes less than 5 minutes to complete.
In the Community: Clinical Trial
A clinical trial for hemorrhagic cystitis testing a new experimental drug is open for enrollment for qualifying patients at sites in the Pittsburgh, PA and Detroit, MI areas.
The title of the trial is: A Multicenter, Dose-Ranging, Placebo-Controlled Trial Evaluating the Safety, Tolerability and Efficacy of LP-10 in Subjects With Refractory Moderate to Severe Hemorrhagic Cystitis. To learn more, including inclusion/exclusion criteria, see the ClinicalTrials.gov entry in the link below. ClinicalTrials.gov Identifier: NCT03129126.
Note: The trial is not affiliated with the RC Foundation. Patients should carefully review their situation before deciding to participate. As a reminder, if you are a researcher or healthcare provider actively researching RC please contact the RC Foundation to discuss highlighting your work.
