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Below, week by week, is what OnCo's record of Dermatofibrosarcoma protuberans says about the first two months: the order is typical, the timing is yours to ask about. Dermatofibrosarcoma protuberans is a rare, slow-growing cancer of the deeper skin that usually appears as a firm plaque or lump on the trunk and is often mistaken for a scar or cyst for years. Surgery with wide margins cures most people; for the few whose tumour cannot be removed or has spread, the pill imatinib works because almost every one is driven by a single gene fusion it blocks. Sections appear only where the record has something to say. Orientation, not medical advice.
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.
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.
Wide local excision with 2 to 3 cm margins to fascia, or Mohs micrographic surgery with complete circumferential margin assessment; re-excision for involved margins.
Adjuvant radiotherapy to the tumour bed.
Imatinib for several months to shrink large or facial tumours before excision.
Imatinib after confirming the COL1A1-PDGFB fusion (EORTC 62027 and SWOG S0345); surgery after response where feasible.
Sunitinib or pazopanib; sarcoma-type chemotherapy with doxorubicin for metastatic fibrosarcomatous disease.
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.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
Every term links to the glossary.