Advanced Options to Consider
We have explored a set of advanced options to go beyond the current standard of care.
- We are sharing this information for reference only. The utility of many of these options has not been proven in clinical trials yet, so they are considered for research use only (RUO).
- We will outline these options, why they may be useful, and discuss actions that need to be taken at different times to enable these options.
- We share examples of some providers/vendors for information only. The listing is not an endorsement of these providers/vendors, and we do not guarantee that the information is fully up to date.
Always consult with healthcare providers to determine the best course of action for individual situations.
Jump to:
Receiving a cancer diagnosis is overwhelming. Often, this is the first time that a patient hears about leiomyosarcoma. Yet, it is critical to understand available options quickly and make decisions to open up future opportunities.
What to focus on
- Confirm the diagnosis and pathology
- Identify a sarcoma specialist (see practical tips below)
- Work with your sarcoma specialist to understand the care team
- Request a second opinion at a major sarcoma center
- Collect imaging and pathology reports
Who is involved (the care team)
Your sarcoma specialist and their team will be your key contact, coordinating tests and treatments with other specialists and labs.
- Primary oncologists or referring physician
- Sarcoma specialist (medical oncologist with sarcoma expertise)
- Sarcoma surgeon
- Pathologist
- Radiologist
- Testing labs (depending on chosen tests)
Questions to ask
- How many leiomyosarcoma patients do you see a year?
- Who would you recommend for a second opinion?
- How do you think about experimental treatments?
Practical tips
Sarcomas are rare, so treatment at or in consultation with a expert center in sarcoma care can be important. Some of the top sarcoma centers include:
- Memorial Sloan Kettering Cancer Center (USA)
- Dana-Farber Brigham Cancer Center (USA)
- MD Anderson Cancer Center (USA)
- Mayo Clinic (USA)
- UCLA Jonsson Comprehensive Cancer Center (USA)
- Princess Margaret Cancer Center (Canada)
- Gustave Roussy (France)
- Royal Marsden Hospital (UK)
Additional expert sarcoma centers can be found below:
These links do not represent an endorsement by the Foundation.
- Request copies of pathology reports, imaging scans, and medical records early.
- Keep organized records of all appointments, tests, and results.
- Bring a family member or friend to appointments to help take notes.
- Many of the steps in this journey require patients and families to actively advocate for themselves.
- Hospitals, doctors, and labs do not always automatically coordinate these efforts.
- Even at major cancer centers, patients may need to ask questions, request tests, and follow up repeatedly to ensure these steps happen.
The first step is to perform extensive testing, to learn more about the tumor and the body. The results from these tests can influence future treatment options and research opportunities.
What to focus on
- Have comprehensive diagnostic imaging
- Have a pathology confirmation
- Perform genomic testing
- Plan for collection and storage of tumor tissue and blood
- Ensure communication and coordination between oncology and surgical teams
Who is involved
- Sarcoma specialist
- Sarcoma surgeon
- Pathologist
Questions to ask
- What types of genomic or molecular analysis will my tumor undergo?
- How will my tumor tissues be collected and preserved?
Genomic tests and blood collection to consider
What it is: Tumor sequencing is a way of deeply examining the tumor’s genetic “blueprint” to understand what is driving its growth and how it might be treated. There are two types of sequencing:
1. DNA sequencing reads the tumor’s genetic code to look for specific mutations — changes or errors in genes that may be fueling the cancer.
2. RNA sequencing (or RNAseq) measures which genes are active, and to what extent, giving insight into the biological processes the tumor is using to survive and grow.
Why it's done: These tests can provide clues about what is driving your cancer and may help identify potential treatment targets. In addition, it is used for cancer-informed liquid biopsy tests, to find cancer-specific mutations that are tracked over time to measure disease load.
When it's done: This can be done from a biopsy sample. If a biopsy isn't available, it can be performed on the cancer removed during surgery.
Examples: Tempus (xE for whole exome, xT for solid tumor with a normal match, xR for RNA sequencing), BostonGene TumorPortrait
What it is: This is DNA sequencing performed on the normal, non-cancerous cells (often from a blood or saliva sample), to provide a baseline of the genetic information one is born with
Why it's done: It helps distinguish between genetic changes that are unique to the cancer and those inherited (germline mutations), which can have implications for treatment and one’s family because of predisposition or risks to certain cancers.
Examples: LabCorp/Invitae, or Tempus/Ambry
What it is: This determines how your body metabolizes certain drugs to inform treatment choices. This can involve genetic tests (pharmacogenomics) or protein analysis (proteomics).
Why it's done: It can predict whether you might be more sensitive or resistant to certain chemotherapy drugs or other treatments, helping your doctor choose the most effective and safest options. For example, some tests can assess how you process Irinotecan, a common chemotherapy drug.
Examples: OneOme pharmacogenomics tests (often from a cheek swab), or mProbe proteomics tests to quantify expression levels of proteins involved in chemotherapy.
What it is: This analyzes the Human Leukocyte Antigen (HLA) genes to allow certain advanced therapies, such as cancer vaccines, to be developed.
Why it's done: HLA genes play a crucial role in the immune system's ability to recognize and fight cancer. Development of cancer vaccines uses this information to select vaccine targets.
Examples: LabCorp or Red Cross using a whole blood or buccal (cheek swab) sample.
What it is: This is to collect and store a blood sample before any surgical intervention to provide a baseline for future monitoring. This collection is done by the healthcare provider. It is optional, and it is to provide a positive control only.
Why it's done: This sample can be used for "liquid biopsy" tests, which detect tumor DNA circulating in your blood. This provides a baseline for monitoring your disease status after treatment.
For many patients, surgery is a key part of treatment. The primary goal of surgery is to remove the tumor. It is also a crucial opportunity to collect tissue samples in specific ways for further analysis.
Tissue collection
- The collected tissues are sent to pathology first to determine the tumor's type and extent.
- Any left-over tissues can be used for other exploratory purposes to inform future therapeutic options. Some of these require collection and preservation methods that are not routine in most hospitals. (e.g., snap frozen tissues, viably frozen tissues)
It is essential to discuss in advance the collection requirements with the surgical team, and agree on a priority list to send the tissue in case there is not enough.
Who is involved
- Sarcoma surgeon
- Sarcoma specialist
- Pathologist
- Radiologist
- Surgical care team
Questions to ask
- How will tumor tissue be preserved for testing or research?
- Where will the tumor tissue be sent?
Tissue preservation methods
What it is: “Snap frozen tissues” are samples put in liquid nitrogen to quickly freeze the tissues.
Why it's done: The "snap frozen" samples are needed for mass spectrometry in immunopeptidomics to inform cancer vaccine design.
Examples: StoreMyTumor.com, SpeciCare, and pattern.org
What it is: "Viably frozen tissues” are samples stored in specific conditions to enable cancer cells to survive upon thawing
Why it's done: The "viably frozen" sample is critical for two purposes. First, it can be used for creating cell models or organoids (3D cell cultures that mimic the cancer), which can directly test the effectiveness of drugs. Second, it can be used for single-cell RNA sequencing, which tells how much each gene is expressed on a cell-by-cell basis.
Examples: StoreMyTumor.com, SpeciCare, and pattern.org
After surgery, patients typically move into a phase focused on recovery, ongoing treatment decisions, and monitoring.
What to focus on
- Wait for pathology review of the removed tumor
- Perform additional genomic or molecular test results (e.g., drug sensitivity screen, immunohistochemistry, immunopeptidomics)
- Explore additional tests and therapies, including experimental ones
- Initiate ongoing surveillance monitoring (e.g., liquid biopsy)
Who is involved
- Sarcoma specialist or medical oncologist
- Surgical team
- Radiologist
Questions to ask
- What did the final pathology report show?
- What are the next treatment options?
- What experimental therapies may be appropriate? Why and why not?
- How often should we do monitoring and why?
Clinical trials
- clinicaltrials.gov (Public website with available clinical trials)
Other experimental tests and treatments to consider
What it is: This takes the cancer cells, grows them in a laboratory setting and tests various drugs or drug combinations to measure the ability to kill cancer cells. This requires viably-frozen tissues to be preserved at the time of surgery.
Why it's done: This test directly determines which drugs or drug combinations are most effective against the cancer cells, guiding treatment decisions.
Example: SEngine Precision Medicine PARIS test, Travera Rapid Therapy Selection™ Test
What it is: IHC refers to staining of histology slides with antibodies to detect proteins on the surface of cancer cells. IHC often uses Formalin-Fixed-Paraffin-Embedded (FFPE) slides, which are standard tissue preparations.
Why it's done: It confirms which proteins are present and available on the cell surface, which can be important for guiding certain targeted therapies, antibody drug conjugates, radioligand therapies, and CAR-T.
Example: Labcorp, NeoGenomics, HistoWiz
What it is: This uses mass spectrometry to analyze peptides that are presented on the surface of the cancer cells. This requires snap-frozen tissues to be preserved at the time of surgery.
Why it's done: These peptides are potentially valuable targets for cancer vaccines since immune cells can target them to recognize the cancer cells.
Example: CompleteOmics
What it is: This is a custom-designed vaccine that stimulates the immune system to recognize and attack specific features of the cancer.
Why it's done: Vaccines are most effective when the amount of cancer is low. If one can train the immune system to recognize certain features of the cancer, it may provide long-term protection that keeps the cancer in check and prevents recurrence.
Examples: Jamie Leandro Foundation, CeGAT, NCT Heidelberg led by Prof. Dr. Dirk Jaeger
What it is: When certain proteins are found (e.g. by IHC) to be preferentially expressed on cancer cells, it creates a roadmap for precision medicine. Essentially, if the cancer has a specific "lock," we can design a "key" to find it. There are many advanced therapies that have been developed or are currently in clinical trials:
Antibody-Drug Conjugate (ADC): Think of these as biological "smart bombs." They consist of an antibody linked to a potent chemotherapy (the payload). The antibody seeks out the tumor protein, enters the cell, and releases the drug directly where it’s needed most.
Radioligand therapy (RLT): Similar to ADCs, RLT uses a targeting molecule (like an antibody fragment) to home in on cancer cells. However, instead of chemotherapy, it carries a radioactive isotope that delivers localized radiation to destroy the tumor from the inside out.
Chimeric-Antigen-Receptor T-cell (CAR-T) Therapies: A patient's T-cells are harvested and genetically engineered to recognize a specific cancer protein. These engineered cells are then infused back into the patient to attack the cancer. While CAR-T’s have been curative for many blood cancers, researchers are still working to overcome the unique challenges of solid tumors like LMS.
Bispecific T-cell Engagers (BiTE): BiTEs act as molecular matchmakers. One side of the molecule grabs onto the cancer cell, while the other side grabs a nearby T-cell, forcing the immune system to recognize and attack the intruder. They provide a similar "bridge" to CAR-T but without the need for complex cell engineering.
Why it's done: These are the cutting-edge therapies that are in active development. They leverage specific cell-surface features of the cancer cells for targeting. They offer vital alternatives for patients who may have exhausted standard-of-care options or who require a more targeted approach.
Examples: Consultation with medical oncologists, clinicaltrials.gov for drugs in development
What it is: This is a blood test (liquid biopsy) that measures the amount of circulating tumor DNA (ctDNA) in the blood. ctDNA is DNA released from cancer cells in minute amounts that can be detected in blood.
Why it's done: The amount of ctDNA helps to detect any signs of disease recurrence, or to track response to treatment. This test can be done every few month to provide a longitudinal tracking of disease. If any blood is collected before the surgery, it provides a baseline measurement of the disease burden before the cancer is removed.
Examples:
Tumor-informed: Natera Signatera, Tempus xF
Tissue-free: Natera Latitude, Guardant 360 Response, Guardant Reveal, BillionToOne Northstar Response
Upon Diagnosis
Receiving a cancer diagnosis is overwhelming. Often, this is the first time that a patient hears about leiomyosarcoma. Yet, it is critical to understand available options quickly and make decisions to open up future opportunities.
What to focus on
- Confirm the diagnosis and pathology
- Identify a sarcoma specialist (see practical tips below)
- Work with your sarcoma specialist to understand the care team
- Request a second opinion at a major sarcoma center
- Collect imaging and pathology reports
Who is involved (the care team)
Your sarcoma specialist and their team will be your key contact, coordinating tests and treatments with other specialists and labs.
- Primary oncologists or referring physician
- Sarcoma specialist (medical oncologist with sarcoma expertise)
- Sarcoma surgeon
- Pathologist
- Radiologist
- Testing labs (depending on chosen tests)
Questions to ask
- How many leiomyosarcoma patients do you see a year?
- Who would you recommend for a second opinion?
- How do you think about experimental treatments?
Practical tips
Sarcomas are rare, so treatment at or in consultation with a expert center in sarcoma care can be important. Some of the top sarcoma centers include:
- Memorial Sloan Kettering Cancer Center (USA)
- Dana-Farber Brigham Cancer Center (USA)
- MD Anderson Cancer Center (USA)
- Mayo Clinic (USA)
- UCLA Jonsson Comprehensive Cancer Center (USA)
- Princess Margaret Cancer Center (Canada)
- Gustave Roussy (France)
- Royal Marsden Hospital (UK)
Additional expert sarcoma centers can be found below:
These links do not represent an endorsement by the Foundation.
- Request copies of pathology reports, imaging scans, and medical records early.
- Keep organized records of all appointments, tests, and results.
- Bring a family member or friend to appointments to help take notes.
- Many of the steps in this journey require patients and families to actively advocate for themselves.
- Hospitals, doctors, and labs do not always automatically coordinate these efforts.
- Even at major cancer centers, patients may need to ask questions, request tests, and follow up repeatedly to ensure these steps happen.
Profiling and Planning
The first step is to perform extensive testing, to learn more about the tumor and the body. The results from these tests can influence future treatment options and research opportunities.
What to focus on
- Have comprehensive diagnostic imaging
- Have a pathology confirmation
- Perform genomic testing
- Plan for collection and storage of tumor tissue and blood
- Ensure communication and coordination between oncology and surgical teams
Who is involved
- Sarcoma specialist
- Sarcoma surgeon
- Pathologist
Questions to ask
- What types of genomic or molecular analysis will my tumor undergo?
- How will my tumor tissues be collected and preserved?
Genomic tests and blood collection to consider
What it is: Tumor sequencing is a way of deeply examining the tumor’s genetic “blueprint” to understand what is driving its growth and how it might be treated. There are two types of sequencing:
1. DNA sequencing reads the tumor’s genetic code to look for specific mutations — changes or errors in genes that may be fueling the cancer.
2. RNA sequencing (or RNAseq) measures which genes are active, and to what extent, giving insight into the biological processes the tumor is using to survive and grow.
Why it's done: These tests can provide clues about what is driving your cancer and may help identify potential treatment targets. In addition, it is used for cancer-informed liquid biopsy tests, to find cancer-specific mutations that are tracked over time to measure disease load.
When it's done: This can be done from a biopsy sample. If a biopsy isn't available, it can be performed on the cancer removed during surgery.
Examples: Tempus (xE for whole exome, xT for solid tumor with a normal match, xR for RNA sequencing), BostonGene TumorPortrait
What it is: This is DNA sequencing performed on the normal, non-cancerous cells (often from a blood or saliva sample), to provide a baseline of the genetic information one is born with
Why it's done: It helps distinguish between genetic changes that are unique to the cancer and those inherited (germline mutations), which can have implications for treatment and one’s family because of predisposition or risks to certain cancers.
Examples: LabCorp/Invitae, or Tempus/Ambry
What it is: This determines how your body metabolizes certain drugs to inform treatment choices. This can involve genetic tests (pharmacogenomics) or protein analysis (proteomics).
Why it's done: It can predict whether you might be more sensitive or resistant to certain chemotherapy drugs or other treatments, helping your doctor choose the most effective and safest options. For example, some tests can assess how you process Irinotecan, a common chemotherapy drug.
Examples: OneOme pharmacogenomics tests (often from a cheek swab), or mProbe proteomics tests to quantify expression levels of proteins involved in chemotherapy.
What it is: This analyzes the Human Leukocyte Antigen (HLA) genes to allow certain advanced therapies, such as cancer vaccines, to be developed.
Why it's done: HLA genes play a crucial role in the immune system's ability to recognize and fight cancer. Development of cancer vaccines uses this information to select vaccine targets.
Examples: LabCorp or Red Cross using a whole blood or buccal (cheek swab) sample.
What it is: This is to collect and store a blood sample before any surgical intervention to provide a baseline for future monitoring. This collection is done by the healthcare provider. It is optional, and it is to provide a positive control only.
Why it's done: This sample can be used for "liquid biopsy" tests, which detect tumor DNA circulating in your blood. This provides a baseline for monitoring your disease status after treatment.
Surgery
For many patients, surgery is a key part of treatment. The primary goal of surgery is to remove the tumor. It is also a crucial opportunity to collect tissue samples in specific ways for further analysis.
Tissue collection
- The collected tissues are sent to pathology first to determine the tumor's type and extent.
- Any left-over tissues can be used for other exploratory purposes to inform future therapeutic options. Some of these require collection and preservation methods that are not routine in most hospitals. (e.g., snap frozen tissues, viably frozen tissues)
It is essential to discuss in advance the collection requirements with the surgical team, and agree on a priority list to send the tissue in case there is not enough.
Who is involved
- Sarcoma surgeon
- Sarcoma specialist
- Pathologist
- Radiologist
- Surgical care team
Questions to ask
- How will tumor tissue be preserved for testing or research?
- Where will the tumor tissue be sent?
Tissue preservation methods
What it is: “Snap frozen tissues” are samples put in liquid nitrogen to quickly freeze the tissues.
Why it's done: The "snap frozen" samples are needed for mass spectrometry in immunopeptidomics to inform cancer vaccine design.
Examples: StoreMyTumor.com, SpeciCare, and pattern.org
What it is: "Viably frozen tissues” are samples stored in specific conditions to enable cancer cells to survive upon thawing
Why it's done: The "viably frozen" sample is critical for two purposes. First, it can be used for creating cell models or organoids (3D cell cultures that mimic the cancer), which can directly test the effectiveness of drugs. Second, it can be used for single-cell RNA sequencing, which tells how much each gene is expressed on a cell-by-cell basis.
Examples: StoreMyTumor.com, SpeciCare, and pattern.org
Further Treatments and Monitoring
After surgery, patients typically move into a phase focused on recovery, ongoing treatment decisions, and monitoring.
What to focus on
- Wait for pathology review of the removed tumor
- Perform additional genomic or molecular test results (e.g., drug sensitivity screen, immunohistochemistry, immunopeptidomics)
- Explore additional tests and therapies, including experimental ones
- Initiate ongoing surveillance monitoring (e.g., liquid biopsy)
Who is involved
- Sarcoma specialist or medical oncologist
- Surgical team
- Radiologist
Questions to ask
- What did the final pathology report show?
- What are the next treatment options?
- What experimental therapies may be appropriate? Why and why not?
- How often should we do monitoring and why?
Clinical trials
- clinicaltrials.gov (Public website with available clinical trials)
Other experimental tests and treatments to consider
What it is: This takes the cancer cells, grows them in a laboratory setting and tests various drugs or drug combinations to measure the ability to kill cancer cells. This requires viably-frozen tissues to be preserved at the time of surgery.
Why it's done: This test directly determines which drugs or drug combinations are most effective against the cancer cells, guiding treatment decisions.
Example: SEngine Precision Medicine PARIS test, Travera Rapid Therapy Selection™ Test
What it is: IHC refers to staining of histology slides with antibodies to detect proteins on the surface of cancer cells. IHC often uses Formalin-Fixed-Paraffin-Embedded (FFPE) slides, which are standard tissue preparations.
Why it's done: It confirms which proteins are present and available on the cell surface, which can be important for guiding certain targeted therapies, antibody drug conjugates, radioligand therapies, and CAR-T.
Example: Labcorp, NeoGenomics, HistoWiz
What it is: This uses mass spectrometry to analyze peptides that are presented on the surface of the cancer cells. This requires snap-frozen tissues to be preserved at the time of surgery.
Why it's done: These peptides are potentially valuable targets for cancer vaccines since immune cells can target them to recognize the cancer cells.
Example: CompleteOmics
What it is: This is a custom-designed vaccine that stimulates the immune system to recognize and attack specific features of the cancer.
Why it's done: Vaccines are most effective when the amount of cancer is low. If one can train the immune system to recognize certain features of the cancer, it may provide long-term protection that keeps the cancer in check and prevents recurrence.
Examples: Jamie Leandro Foundation, CeGAT, NCT Heidelberg led by Prof. Dr. Dirk Jaeger
What it is: When certain proteins are found (e.g. by IHC) to be preferentially expressed on cancer cells, it creates a roadmap for precision medicine. Essentially, if the cancer has a specific "lock," we can design a "key" to find it. There are many advanced therapies that have been developed or are currently in clinical trials:
Antibody-Drug Conjugate (ADC): Think of these as biological "smart bombs." They consist of an antibody linked to a potent chemotherapy (the payload). The antibody seeks out the tumor protein, enters the cell, and releases the drug directly where it’s needed most.
Radioligand therapy (RLT): Similar to ADCs, RLT uses a targeting molecule (like an antibody fragment) to home in on cancer cells. However, instead of chemotherapy, it carries a radioactive isotope that delivers localized radiation to destroy the tumor from the inside out.
Chimeric-Antigen-Receptor T-cell (CAR-T) Therapies: A patient's T-cells are harvested and genetically engineered to recognize a specific cancer protein. These engineered cells are then infused back into the patient to attack the cancer. While CAR-T’s have been curative for many blood cancers, researchers are still working to overcome the unique challenges of solid tumors like LMS.
Bispecific T-cell Engagers (BiTE): BiTEs act as molecular matchmakers. One side of the molecule grabs onto the cancer cell, while the other side grabs a nearby T-cell, forcing the immune system to recognize and attack the intruder. They provide a similar "bridge" to CAR-T but without the need for complex cell engineering.
Why it's done: These are the cutting-edge therapies that are in active development. They leverage specific cell-surface features of the cancer cells for targeting. They offer vital alternatives for patients who may have exhausted standard-of-care options or who require a more targeted approach.
Examples: Consultation with medical oncologists, clinicaltrials.gov for drugs in development
What it is: This is a blood test (liquid biopsy) that measures the amount of circulating tumor DNA (ctDNA) in the blood. ctDNA is DNA released from cancer cells in minute amounts that can be detected in blood.
Why it's done: The amount of ctDNA helps to detect any signs of disease recurrence, or to track response to treatment. This test can be done every few month to provide a longitudinal tracking of disease. If any blood is collected before the surgery, it provides a baseline measurement of the disease burden before the cancer is removed.
Examples:
Tumor-informed: Natera Signatera, Tempus xF
Tissue-free: Natera Latitude, Guardant 360 Response, Guardant Reveal, BillionToOne Northstar Response
