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REFERENCE

Resources, Glossary and References

Find reliable information, connect with support services, and understand the medical terms used throughout the SFT Patient Guide.

Living with solitary fibrous tumor (SFT) can involve unfamiliar medical language, questions about treatment, and practical challenges that change over time.

This reference page brings together useful organizations, explanations of common medical terms, and the research that helps inform this guide.

You can return to it whenever you need more information.

ON THIS PAGE

Find what you’re looking for

Support and Resources

Several organizations provide reliable cancer information and practical assistance for patients and caregivers.

Solitary Fibrous Tumor Foundation (SFTF)

CureSFT.org · info@curesft.org

The Solitary Fibrous Tumor Foundation is a patient- and supporter-led nonprofit dedicated to improving education, support, advocacy, and research engagement for people affected by SFT.

Through its website and community initiatives, SFTF works to help patients and caregivers find reliable information, learn from shared experiences, and participate in efforts to advance SFT research.

National Cancer Institute (NCI)

Cancer.gov · 1-800-4-CANCER (1-800-422-6237)

The NCI Cancer Information Service provides free, confidential cancer information in English and Spanish.

Information specialists can help with understanding cancer, finding treatment centers, exploring clinical trials, and locating additional resources.

SARC Sarcoma Centers Directory

Find a Sarcoma Center

The Sarcoma Alliance for Research through Collaboration (SARC) maintains a directory of sarcoma centers. This can be a useful starting point for finding a center with experience treating rare soft tissue tumors.

Ask each center about its experience with SFT and with tumors in your particular part of the body. See Part 6: Finding a Sarcoma Center.

American Cancer Society

Cancer.org · 1-800-227-2345

The American Cancer Society provides cancer information and support, including programs that may help eligible patients with transportation and lodging.

Its Road To Recovery program provides rides in participating areas, and Hope Lodge offers lodging near certain cancer treatment centers. Program availability and eligibility vary by location.

CancerCare

CancerCare.org · 800-813-4673

CancerCare offers free professional counseling, support groups, education, and limited financial assistance for people affected by cancer.

Its oncology social workers can help patients and caregivers navigate emotional and practical challenges.

Patient Advocate Foundation

PatientAdvocate.org · 800-532-5274

Patient Advocate Foundation provides case management and assistance to eligible patients facing problems with insurance, access to care, and healthcare costs.

Triage Cancer

TriageCancer.org

Triage Cancer provides education and navigation resources about health insurance, employment rights, disability benefits, financial issues, and legal protections related to cancer.

United Way 211

211.org · Dial 211 in participating U.S. communities

211 connects people with local services that may provide help with food, housing, utilities, transportation, and other basic needs.

Getting Copies of Your Medical Records

Your hospital or clinic’s medical records department can help you request pathology reports, scan reports, medical images, and other healthcare information.

Many healthcare providers offer electronic access through patient portals.

In the United States, federal privacy rules generally give patients the right to obtain copies of their medical records, with certain exceptions and permitted fees.

For more information, see HHS: Your Medical Records.

You can also visit Preparing for a Visit for help organizing your records and questions.

Medical Glossary

Medical language can be confusing, especially when you’re learning about a rare tumor.

These definitions explain terms commonly used in SFT care and research.

A

Ablation — A treatment that destroys targeted tissue, often using heat or cold. It may be used to treat selected tumors without major surgery.

Active surveillance — Careful monitoring with regular scans and medical visits before starting or changing treatment. It is used in selected situations when immediate treatment may not be necessary.

Antiangiogenic therapy — Treatment that interferes with signals involved in the growth of blood vessels that support tumors. Some medicines used for advanced SFT work this way.

B

Benign — A term describing a tumor that is generally considered noncancerous. For SFT, this label can be misleading because some tumors with less aggressive features may still recur.

Biopsy — A procedure that removes a small sample of tissue for examination by a pathologist.

C

Clinical trial — A research study involving people that evaluates a medical treatment, test, or other healthcare approach.

Comprehensive genomic profiling (CGP) — Testing that examines many genetic changes in a tumor at once. It may help researchers and clinicians better understand a tumor and identify possible treatment or trial options.

CT scan — Computed tomography. An imaging test that uses X-rays and computer processing to create detailed pictures inside the body.

D

Dedifferentiated SFT — A form of SFT in which part of the tumor has developed a distinctly more aggressive, high-grade appearance. It may behave differently from conventional SFT.

Demicco risk model — A tool used to estimate the risk of metastasis in SFT outside the central nervous system. The modified model considers age, tumor size, mitotic activity, and tumor necrosis.

Doege-Potter syndrome — A rare condition in which an SFT causes low blood sugar through abnormal insulin-like growth factor activity, usually involving IGF-2.

E

Embolization — A procedure that blocks blood flow to a tumor or another area of the body. It may be used before selected surgeries or for other specific treatment purposes.

F

FAP (fibroblast activation protein) — A protein found on certain cells and expressed in some tumors, including SFT. Researchers are studying FAP-targeted imaging and treatments.

FDG PET — A type of PET scan that uses a radioactive glucose-like tracer to show how tissues use glucose. SFT tumors vary in how strongly they appear on FDG PET.

Fusion gene — An abnormal gene formed when parts of two genes become joined together. The NAB2-STAT6 fusion is characteristic of SFT.

G

Genomic profiling — Testing that examines genetic changes in tumor cells. Results may provide information about tumor biology or help identify certain research opportunities.

G-score — A risk assessment model developed to estimate the likelihood of early and late recurrence in localized SFT outside the central nervous system. It is one of several models used or studied in SFT.

H

Hemangiopericytoma (HPC) — An older diagnostic term for tumors that are now generally classified as SFT, particularly those involving the coverings of the brain and spinal cord.

I

Immunohistochemistry (IHC) — A laboratory method that uses special stains to detect proteins in tissue. Pathologists use IHC to help identify different types of tumors.

K

Ki-67 — A protein associated with cell proliferation. Ki-67 staining helps estimate the proportion of tumor cells that are actively dividing.

L

Liquid biopsy — A test that looks for tumor-related material, such as circulating tumor DNA, in blood or other body fluids. Its role in routine SFT monitoring remains investigational.

Local recurrence — SFT returning in or near the area where the original tumor was treated.

M

Margins (R0, R1, R2) — Terms describing whether tumor remains after surgery.

  • R0: No residual tumor identified, with microscopically negative margins.
  • R1: Microscopic tumor remains or is present at a surgical margin.
  • R2: Visible or gross tumor remains after surgery.

Metastasis — The spread of tumor cells from the original tumor site to another part of the body.

Mitotic count — A measure of how many tumor cells are visibly dividing in a tissue sample. It helps pathologists assess tumor activity.

MRI — Magnetic resonance imaging. A scan that uses magnetic fields and radio waves to create detailed images of tissues and organs.

Multidisciplinary tumor board — A meeting where specialists from different medical fields review a patient’s diagnosis and treatment options together.

N

NAB2-STAT6 fusion — A characteristic genetic alteration found in most SFTs. It joins parts of the NAB2 and STAT6 genes and plays an important role in the development of the tumor.

Necrosis — Areas of dead tissue within a tumor. The extent of necrosis can be relevant to certain pathology and risk assessments.

NED (No Evidence of Disease) — A term used when available examinations and tests show no detectable cancer. It does not guarantee that recurrence will never occur.

Next-generation sequencing (NGS) — A laboratory technology used to analyze genetic material. Some NGS tests can identify mutations, gene fusions, or other changes in a tumor.

O

Oligometastatic disease — A situation in which cancer has spread to a limited number of sites. In selected patients, treatment directed at individual tumors may be considered.

Oligoprogression — When a small number of tumors grow or worsen while other known areas of disease remain controlled.

P

Palliative care — Specialized care focused on relieving symptoms, improving quality of life, and supporting patients and families. It can be provided alongside active cancer treatment.

Pathologist — A doctor who examines tissue, cells, and laboratory findings to help diagnose disease.

PET scan — Positron emission tomography. An imaging test that uses a radioactive tracer to show certain biological activities or characteristics of tissues.

Progression — An increase or worsening of known disease, such as tumor growth or the appearance of additional tumors.

R

Radiation therapy — Treatment that uses high-energy radiation to damage or destroy tumor cells.

Recurrence — The return of SFT after treatment and a period when the disease was no longer detectable.

Risk model — A tool that uses clinical and pathology information to estimate how likely certain outcomes may be among patients with similar tumor characteristics.

S

Sarcoma — A broad group of cancers and related tumors arising in tissues such as muscle, fat, bone, nerves, and connective tissues.

SBRT (stereotactic body radiation therapy) — A highly precise form of radiation treatment that delivers relatively high doses to a defined target, usually over a small number of sessions.

SFT (solitary fibrous tumor) — A rare tumor arising from connective tissue that can develop almost anywhere in the body. Its behavior varies, with some tumors remaining slow-growing and others recurring or spreading.

Stable disease — A term used when cancer has not changed enough to meet defined criteria for tumor shrinkage or progression over a period of time.

STAT6 immunohistochemistry (STAT6 IHC) — A laboratory test used to help identify SFT. Strong STAT6 staining within tumor cell nuclei is highly characteristic of SFT, although the diagnosis also depends on other pathology findings.

Surveillance — Regular medical follow-up, often involving scans, to monitor for recurrence or other changes after treatment.

Survivorship care plan — A written summary of cancer diagnosis, treatments, potential long-term effects, and recommended follow-up care.

T

TERT promoter mutation — A genetic change affecting regulation of the TERT gene. Some studies associate it with more aggressive SFT behavior, but its significance varies and it is not used alone to determine treatment.

TKI (tyrosine kinase inhibitor) — A type of medicine that blocks certain cellular signals. Some TKIs, such as pazopanib and axitinib, are used in selected patients with advanced SFT.

TP53 — A gene involved in protecting cells from abnormal growth. Certain TP53 alterations have been identified in aggressive forms of SFT, but their meaning for an individual patient requires specialist interpretation.

Tumor board — Another term for a multidisciplinary meeting where doctors review complex cases and treatment options.

W

WHO grade (CNS WHO grade) — A classification used to describe certain tumors of the central nervous system. SFT involving the brain or spinal cord coverings may be assigned CNS WHO grade 1, 2, or 3, based on defined pathology features.

Sources and References

The SFT Patient Guide draws on peer-reviewed research, clinical guidance, and resources from established cancer and patient-support organizations.

Because SFT is rare, some treatment and follow-up recommendations are based on relatively small studies, retrospective research, and expert experience.

Scientific understanding continues to evolve. Where evidence is limited or recommendations vary, the guide aims to acknowledge those uncertainties.

SFT diagnosis, pathology, and risk assessment

  • Demicco EG, et al. (2019). Comparison of published risk models for prediction of outcome in patients with extrameningeal solitary fibrous tumour. Histopathology. Read the publication
  • Validation of a novel risk score to predict early and late recurrence in solitary fibrous tumour (2022). British Journal of Cancer. Read the publication
  • WHO Classification of Tumours Editorial Board (2021). Classification of Tumours of the Central Nervous System, fifth edition. World Health Organization. Read a published summary

SFT treatment and clinical research

  • Martin-Broto J, et al. (2019). Pazopanib for treatment of advanced malignant and dedifferentiated solitary fibrous tumour: a multicentre, single-arm, phase 2 trial. The Lancet Oncology. Read the publication
  • Stergiopoulos GM, Tinoco G, Robinson SI. (2026). Systemic Therapy for Solitary Fibrous Tumor. Current Treatment Options in Oncology. Read the publication

Cancer care, patient support, and practical resources

The SFT Patient Guide provides general educational information and does not replace medical advice from your healthcare team. Every person’s experience with SFT is different. Decisions about diagnosis, treatment, and follow-up should be made with qualified healthcare professionals familiar with your individual medical history.