The Ovarian Cancer Research Alliance (OCRA)
Although their main focus is on epithelial ovarian cancer, OCRA has also funded research and provided resources for other types of ovarian cancer, including rare tumors.
Scientific papers
- “Rare ovarian tumors: incidence, diagnosis, and treatment” by S. Ahmed and S. Templeton. (2021)
- “Rare ovarian tumors: a review of clinical and pathological features” by H. J. Kim et al. (2021)
- “Management of rare ovarian tumors: a single-center experience” by J. Kim et al. (2020)
- “Diagnosis and management of rare ovarian tumors: a systematic review” by M. Haque et al. (2020)
- “Rare ovarian tumors: diagnosis and management” by S. Mallick et al. (2019)
- “Management of rare ovarian tumors: a case series and review of the literature” by A. Vaidya et al. (2018)
- “Rare ovarian tumors: a case series and literature review” by S. Cao et al. (2018)
- “Management of rare ovarian tumors: a review of the literature” by R. K. Subramaniam et al. (2017)
- “Rare ovarian tumors: a review of diagnostic and therapeutic challenges” by M. L. Berger et al. (2016)
- “Rare ovarian tumors: an overview” by L. F. Benedet et al. (2015)
* Please refer to the registries webpage (SCCOHT-SMARCA4 Registry & Biobank and SCSTs registry and biobank) for dedicated articles on each tumor type.
Foundations
The Clearity Foundation is a non-profit organization that offers counseling and genetic testing services for women with any type of ovarian cancer, including rare tumors.
National Ovarian Cancer Coalition (NOCC)
While their main focus is on epithelial ovarian cancer, NOCC has also provided resources and support for other types of ovarian cancer, including rare tumors.
World Ovarian Cancer Coalition (WOCC).
The World Ovarian Cancer Coalition is a network of organizations from around the world working together to improve survival and quality of lifefor women with ovarian cancer. While their main focus is on ovarian cancer in general, they have also worked to raise awareness and research about rare types of ovarian cancer.
European Network of Gynaecological Cancer.
The European Society of Gynaecological Oncology (ESGO) advances treatment, care and research of gynaecological cancers and offers members and non-members a variety of ways to advance their professional development.
Asociación de Afectados por Cáncer de Ovario – ASACO
ASACO is made up of women affected by ovarian and gynecological cancer as well as their family members or caregivers, health professionals and collaborators who are involved in medical and psychological treatments.
More about the disease
Supporting material for ovarian cancer patients and carriers
Peer Support:
You don’t have to be alone during this difficult phase. Even if you don’t know other patients around you, you can join online communities:
- The Small Cell Ovarian Cancer Support Community –This is a private Facebook group for SCCOHT patients, survivors and caregivers.
- Network of Youth Cancer Survivors –This is a Discord community moderated by survivors of childhood, adolescent, and young adult cancer patients (CAYAs cancer). This community welcomes everyone who supports CAYAs cancer.
Well-being resources:
- https://beatcancer.eu/resources/long-term-follow-up-care/article/how-to-cope-with-the-fear-of-relapse-living-beyond-the-shadow/
- https://www.roswellpark.org/cancertalk/201411/fear-cancer-recurrence-7-ways-ayas-cope
- https://beatcancer.eu/resources/mental-health/publication/the-impact-of-physical-exercise-on-mental-health-among-cancer-survivors-a-promising-strategy-for-well-being/
Clinical trial videos:
Glossary
Adjuvant treatment
One or more anti-cancer drugs used in combination with surgery or radiation therapy as part of the treatment of cancer. Adjuvant usually means «in addition to» initial treatment.
Agnostic tumors
Tumors or cancers that are not limited to a specific type or location in the body. They can occur in various tissues and have different genetic characteristics.
Autologous stem cell transplant
A procedure in which a patient’s healthy stem cells (blood-forming cells) are collected from the blood or bone marrow before treatment, stored, and then given back to the patient after treatment. An autologous stem cell transplant replaces a patient’s stem cells that were destroyed by treatment with radiation or high doses of chemotherapy.
Cancer
A general term of diseases in which abnormal cells divide without control and can invade nearby tissues. Cancer cells can also spread to other parts of the body through the blood and lymph systems.
Carcinoma
A cancer that begins in the skin or in the tissues that line or cover internal organs
Cell models or cell lines
They are in vitro model systems that are widely used in different fields of medical research, especially basic cancer research and drug discovery. Their usefulness is primarily linked to their ability to provide an indefinite source of biological material for experimental purposes. Under the right conditions and with appropriate controls, authenticated cancer cell lines retain most of the genetic properties of the cancer of origin.
Chemotherapy
Treatment directed to kill cells that divide fast, such as cancer cells.
Clinical Trial/Clinical Study
Research Study that involves human subjects. Each study aims to answer scientific questions and to find better ways to prevent and/or treat cancer and/or to support cancer treatments.
Combination chemotherapy
The use of two or more chemotherapy drugs.
Combination/Multimodality therapy
The use of two or more modalities of treatment – surgery, radiotherapy, chemotherapy, or immunotherapy- in combination. Alternately or together, to achieve optimal results against cancer.
Compassionate use
The use of an unauthorized medicine outside of a clinical study in individual patients, under strictly controlled conditions, aims to provide access to medications still under development for patients.
Genomics
The study of all the genes in a person (the genome) and how they interact with each other and with the environment. It’s like looking at the instruction manual for a living thing to understand how it works.
Gene therapies
Medical treatments that involve changing or adding genes to treat or prevent diseases. This can involve replacing a faulty gene with a healthy one, adding a new gene to help the body fight disease, or turning off a harmful gene.
Informed consent
The process in which patients learn about and understand the purpose and aspects of clinical a trial and then decide voluntarily whether to participate. The process includes a document describing what patients must know about the potential benefits and risks of participation in the project before being able to agree to undergo it knowledgably. Informed consent is required in all studies. If a patient signs an informed consent form and enters in the study, they are still free to leave it at any time.
Innovative treatments
New and creative ways of treating diseases or medical conditions that may be different from traditional methods.
Immunotherapy
A type of therapy that uses substances which stimulate the immune system to help the body fight cancer, infection, and other diseases.
Investigational new drug
A drug allowed to be used in clinical trials but not yet approved for commercial marketing.
Metastasis
The migration of cancer cells from the original tumor site through the blood and lymph vessels to produce cancer growth in other tissues. Metastasis also is the term used for secondary cancer growing at a distant site unless it is determined to be a new primary tumor.
Metastatic cancer
Cancer that spreads from its original site to one or more additional body sites.
Neoadjuvant treatment
Any treatment that is given for cancer (like chemotherapy, radiotherapy) before the main treatment, usually surgery, with the goal of making the main treatment more likely to be successful.
NGS (Next-Generation Sequencing)
A high-tech method used to analyze DNA, which can read large amounts of genetic information quickly and accurately. It’s like fast-forwarding from older methods of reading DNA to a more advanced and efficient way.
No Evidence of Disease (N.E.D.)
It means that, after treatment, doctors can no longer find signs of cancer in the body using the tests available. It doesn’t necessarily mean the cancer is completely gone, but that it is not detectable at this time.
Off-label use
Refers to the practice of prescribing a medicine for a different purpose than what was approved.
Palliative care
An interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with a serious, complex and sometimes terminal illnesses.
Palliative treatment
Any anticancer treatment (like chemotherapy, hormone therapy, radiotherapy, target therapy, immunotherapy) given for advanced and incurable diseases. The goals are improving surviving and quality of life, in many cases treating advances cancer as a chronic disease.
Patient-derived experimental models
Patient-derived experimental models are essentially tools used in medical research that involve taking cells or tissues from patients and growing them in a laboratory setting. These models allow scientists to study diseases and test potential treatments in a way that closely mimics how the disease behaves in the human body. Essentially, it’s like creating a miniature, lab-based version of a patient’s illness, allowing researchers to experiment with various treatments to determine the most effective options. By using these models, researchers can gain more accurate insights into disease mechanisms and develop personalized therapies tailored to individual patients.
Patient derived xenografts
Tumor tissue that has been taken from a patient and implanted into mice for research purposes. Cancer drugs and other types of treatment may be tested on xenografts to see how well they work before they are given to the patient. Patient-derived xenografts may be used to help plan treatment and learn what the best treatment may be for a patient. They are also being used in the development of new cancer drugs. Also called PDX.
Progression
An increase in tumor size or the emergence of metastasis. Nevertheless, it is crucial to distinguish true tumor growth from pseudo-growth, which can be induced by certain immunotherapy drugs.
Protocol
The outline or plan for testing of an experimental procedure or experimental treatment.
Radiation therapy/radiotherapy
A treatment using X-rays, colbat-60, radium, neutrons, or other types of cell-destroying radiation.
Rare non-epithelial ovarian tumors
Rare non-epithelial ovarian tumors refer to uncommon types of growths that develop in the ovaries but are not made up of the typical tissue found in the outer layer of the ovaries (epithelial tissue).
Regression
A decrease in the size of a tumor or in the extent of cancer in the body.
Remission
When the signs and symptoms of cancer go away, the disease is said to be «in remission». A remission can be temporary or permanent.
Side effects and adverse events
Any unwanted event may be related to the use of a drug or a treatment, it can be any unfavorable and unintended sign, symptom, or disease associated with the use of a drug or a treatment (surgery, radiation therapy) whether related to them or not.
Staging
Methods used to establish the extent of a patient’s disease.
