The first 60 days: Soft tissue sarcoma of the extremity (localised and advanced)
Most soft tissue sarcomas arise in an arm or leg. Limb-saving surgery with radiotherapy cures most localised tumours and is as safe as amputation. For spread disease doxorubicin is the backbone: adding ifosfamide shrinks more tumours without lengthening life, and in leiomyosarcoma adding trabectedin doubles the time the disease stays controlled. Below, week by week, is what OnCo's record of Soft tissue sarcoma of the extremity (localised and advanced) says about the first two months: the order is typical, the timing is yours to ask about. Sections appear only where the record has something to say. Orientation, not medical advice.
What happens now
Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.
Ask which of these were tested and what the results were; see the report reader for what each value means.
These specialties appear in the standard of care for this cancer. In most centres they meet weekly as a tumour board to agree each plan; you can ask when yours was discussed and what was decided.
- PathologistNamed in the standard of care for: Later lines and oligometastatic.
- SurgeonNamed in the standard of care for: Localised, resectable, High-risk localised (large, deep, high grade), Later lines and oligometastatic.
- Medical oncologistNamed in the standard of care for: Localised, resectable, High-risk localised (large, deep, high grade), Advanced, first line, Later lines and oligometastatic.
- Clinical oncologist (radiotherapy)Named in the standard of care for: Localised, resectable, High-risk localised (large, deep, high grade), Later lines and oligometastatic.
- Palliative and supportive care teamNamed in the standard of care for: High-risk localised (large, deep, high grade), Advanced, first line.
A second opinion from a centre that treats many similar cases is normal, not rude; the standard of care tells you what to compare it against.
Each row is a setting from the standard of care, in the order it usually arises. Not all will apply to you; your stage and biomarkers decide which do. The guideline grade, where recorded, says how strong the evidence is.
Limb-sparing wide resection with preoperative (50 Gy) or postoperative (66 Gy) radiotherapy for high-grade or deep tumours over 5 cm; surgery alone for small superficial low-grade tumours.
Neoadjuvant anthracycline-ifosfamide (ISG-STS 1001) in fit patients; regional hyperthermia with chemotherapy or isolated limb perfusion for borderline resectable tumours.
Doxorubicin alone, or doxorubicin plus ifosfamide when shrinkage is needed (EORTC 62012); doxorubicin plus trabectedin for leiomyosarcoma (LMS-04); olaratumab withdrawn after ANNOUNCE.
Gemcitabine-docetaxel, pazopanib, trabectedin, eribulin (liposarcoma); pulmonary metastasectomy or stereotactic radiotherapy for limited lung disease; histology-directed agents and trials.
Generated from this cancer's standard of care, biomarkers and open problems. Take the group that matches where you are. To tick, add your own and print, open the one-page appointment sheet.
Newly diagnosed
- What is my exact diagnosis, stage, and grade, and which tests established them?Everything else follows from an accurate stage and subtype.
- Which biomarkers have been tested on my tumour (for example FNCLCC grade, size over 5 cm and depth, Histological subtype by expert pathology and molecular testing, Margin status after resection, Lung CT staging and surveillance), and what were the results?These results decide eligibility for targeted therapy, immunotherapy, and trials.
- Which subtype is my cancer, and does that change the recommended treatment?Recognised subtypes for this cancer include Localised low-grade soft tissue sarcoma of the limb, Localised high-grade, deep, over 5 cm soft tissue sarcoma of the limb, Locally advanced unresectable limb sarcoma.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Localised, resectable
- For my situation (localised, resectable), which of the standard options do you recommend and why?Guideline options include: Limb-sparing wide resection with preoperative (50 Gy) or postoperative (66 Gy) radiotherapy for high-grade or deep tumours over 5 cm; surgery alone for small superficial low-grade tumours.
High-risk localised (large, deep, high grade)
- For my situation (high-risk localised (large, deep, high grade)), which of the standard options do you recommend and why?Guideline options include: Neoadjuvant anthracycline-ifosfamide (ISG-STS 1001) in fit patients; regional hyperthermia with chemotherapy or isolated limb perfusion for borderline resectable tumours.
- Am I a candidate for Doxorubicin, Ifosfamide, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
- How do the results of ISG-STS 1001 apply to someone like me?Trial populations differ from individual patients; ask how closely you match.
Advanced, first line
- For my situation (advanced, first line), which of the standard options do you recommend and why?Guideline options include: Doxorubicin alone, or doxorubicin plus ifosfamide when shrinkage is needed (EORTC 62012); doxorubicin plus trabectedin for leiomyosarcoma (LMS-04); olaratumab withdrawn after ANNOUNCE.
- Am I a candidate for Doxorubicin, Ifosfamide, Trabectedin, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
- How do the results of EORTC 62012 and LMS-04 apply to someone like me?Trial populations differ from individual patients; ask how closely you match.
Later lines and oligometastatic
- For my situation (later lines and oligometastatic), which of the standard options do you recommend and why?Guideline options include: Gemcitabine-docetaxel, pazopanib, trabectedin, eribulin (liposarcoma); pulmonary metastasectomy or stereotactic radiotherapy for limited lung disease; histology-directed agents and trials.
- Am I a candidate for Gemcitabine, Docetaxel, Pazopanib or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Any stage
- Are there clinical trials I could join, for example of LMS-04, ISG-STS 1001, Trabectedin, Pembrolizumab?Trials are how the next standard of care is set; asking early keeps options open.
- Would a second opinion at a high-volume centre change anything, and can you help arrange it?Rare or high-stakes decisions benefit from a centre that treats many similar patients.
- What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?Supportive care improves quality of life and helps patients complete treatment.
- I read that “A third to a half of high-risk limb sarcomas still metastasise to the lungs”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Chemotherapy prolongs control but rarely survival in advanced disease”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Soft tissue sarcoma of the extremity (localised and advanced): the full pageMost soft tissue sarcomas arise in an arm or leg. Limb-saving surgery with radiotherapy cures most localised tumours and is as safe as amputation. For spread disease doxorubicin is the backbone: adding ifosfamide shrinks more tumours without lengthening life, and in leiomyosarcoma adding trabectedin doubles the time the disease stays controlled.
- One-page appointment sheetYour questions, the words you may hear, what to bring, and space for the answers. Print it.
- Treatment sequencingWhich treatment tends to follow which, line by line.
- NavigatorStandard of care for your stage, what you have tried, and trials near you.
- Histotype-tailored therapy: Histotype-tailored therapy means choosing treatment by the specific sarcoma subtype (there are more than 70) rather than treating all sarcomas alike.
- FNCLCC grade (soft-tissue sarcoma): The FNCLCC grade is a 1-to-3 score for soft-tissue sarcomas based on how abnormal, how fast-dividing, and how much dead tissue the tumour shows; grade drives whether chemotherapy is considered.
Every term links to the glossary.