Patient resources
A diagnosis is overwhelming. Here's where to start.
The map helps you find a specialist. This page is everything around it: the first moves that matter most, the questions to ask, and trustworthy organizations that help with second opinions, money, travel, and your specific type of sarcoma.
First steps after a sarcoma diagnosis
- 1
Get to a sarcoma specialist before your biopsy or surgery, if you possibly can
Sarcomas are rare, and how that very first biopsy or surgery is done can shape everything that follows. Before any procedure, ask to be seen by (or referred to) a sarcoma specialist. If a surgery has already happened, it is still worth getting to a sarcoma center now.
- 2
Ask for an expert pathology review
Sarcoma is hard to diagnose under the microscope. Having your slides reviewed by a pathologist who specializes in sarcoma can confirm the exact subtype, and sometimes changes the diagnosis and the plan entirely.
- 3
A second opinion is normal, and there's help paying for it
Asking for a second opinion at a sarcoma center will not offend your doctor; it is expected. The Sarcoma Alliance's Hand in Hand fund can reimburse travel and consultation costs for an expert second opinion.
- 4
Look for a multidisciplinary team
The strongest sarcoma care brings surgical, medical, and radiation oncology together with sarcoma-trained pathology and radiology, reviewing your case as one team. The map on Find Care flags which centers offer this.
- 5
Ask about clinical trials early, not as a last resort
Sarcoma trials can be a first-line option, not a final one. Bring them up at your first visits. Beat the Odds keeps a live, searchable list of sarcoma trials drawn straight from ClinicalTrials.gov.
Questions to ask a sarcoma center
Bring these to a first visit or a second opinion.
- How many sarcomas, and how many of my specific subtype, do you treat each year?
- Will my case be reviewed by a multidisciplinary sarcoma tumor board?
- Can a sarcoma-specialized pathologist review my biopsy slides?
- Are there clinical trials here that fit my diagnosis?
- Who will coordinate my care across surgery, medical oncology, and radiation?
Support & guidance
Free, sarcoma-specific help from people who have been through it.
Peer-to-peer network (all 50 states) and the Hand in Hand fund, which reimburses costs of an expert second opinion.
Free peer mentorship, support groups, and one-on-one clinical-trial navigation; the Jordan's Dream Fund helps with trial out-of-pocket costs.
Free counseling from oncology social workers, support groups, and limited financial assistance for any cancer.
Money & everyday bills
Help with the non-medical costs that pile up during treatment.
Grants and a 24/7 resource center for everyday costs like rent, utilities, groceries, and transportation, plus one-on-one resource navigators.
Help covering insurance co-payments for treatment, when funds are available for your diagnosis.
Travel & lodging to reach a center
Getting to a specialist shouldn't be the thing that stops you.
Our own grant: travel funding so sarcoma patients can reach a specialist center. Start here if a center is far from home.
Free seats on corporate aircraft to treatment, a clinical trial, or a second opinion. Not based on financial need; you may travel as often as needed.
Free lodging during treatment (31 locations) for patients who live more than ~40 miles from their treatment center.
A lodging locator with discounted hotel rates near hundreds of treatment centers nationwide.
If you have a specific sarcoma type
Subtype-focused groups that go deep on your diagnosis.
Osteosarcoma community: certified peer visitors, family funds, the OsteoBites podcast, and bereavement support.
GIST support: one-on-one counseling, a patient registry, and local meetings.
Free patient navigators who help find qualified doctors, lodging, financial aid, and insurance appeals.
Information, a patient registry, and a support community for desmoid tumors.
Clinical trials
Trials can be a first option in sarcoma, so explore them early.
A live, searchable list of sarcoma trials from ClinicalTrials.gov. Save the ones that fit and bring them to your team.
Free, person-to-person help finding sarcoma trials that match your situation.
The U.S. government's full registry of clinical trials, the primary source our trial finder draws from.