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Many sarcoma trials require treatment-naive status or cap the number of prior lines. She has had surgery only, so she currently qualifies for the widest possible set.
That window closes the day systemic therapy begins — and it cannot be reopened.
Surgically removing limited lung metastases is a real option in sarcoma that does not exist in most cancers. It is not mentioned in the consult note — worth asking whether it has been considered and ruled out, or simply not yet discussed.
Formalin — standard pathology processing — kills the cells. Frozen tissue is what lets her tumour be grown as an organoid and tested against drugs.
The Milken Institute guide says plainly this is not standardised and often not done routinely, even at top-tier centres, unless someone asks in advance. Also worth asking whether the 23 July lung biopsy left any frozen or unstained material.
Copies every answer as plain text, so you can paste them into a message.
Have accession CLS-24-094710 and order 730260012 ready. Ask which campus is reading it and who the pathologist is — Arizona does not list bone and soft tissue among its consultation subspecialties, so it may have been logged as “other” or routed to Rochester.
They may only speak to the referring institution. If so, that is the message to relay to McKay-Dee.
There is no free sarcoma nurse-navigator service like the ones blood cancers have. The closest substitutes are the NLMSF phone line above and, once she is a patient, the sarcoma centre’s own nurse coordinator.
Worsening shortness of breath, or a new oxygen need.
Coughing up blood.
Sudden sharp chest pain, or pain worse on breathing in.
Fever or any sign of infection.
New severe pain, particularly bone or abdominal.
Fainting, confusion, or a sudden change in alertness.
Ask Dr. Ririe to confirm this list for her, and what number to call after hours.
| Diagnosis | Probable metastatic uLMS |
| Surgery | TAH/BSO, 19 Sep 2024 |
| Lung biopsy | 23 Jul 2026 |
| PET | 20 Jul 2026 |
| Pathology amended | 28 Jul 2026 |
| Oncology consult | 29 Jul 2026 |
| Systemic therapy so far | None |
| Performance status | 0–1 |
“Treatment-naive” is why the trial question above is time-critical.
1. Await the pathology report from Mayo
2. Present at multidisciplinary tumour board
3. Precise tumour testing — RET, NTRK, ALK fusions
4. Follow up by video in about a week
5. Once confirmed, explore clinical trials versus doxorubicin/trabectedin, or targeted therapy if an actionable fusion appears
The plan is sound. The questions in Ask are the gaps around it, not a challenge to it.
Every second-opinion centre wants the same four things: the pathology report original and amended, the slides or blocks, imaging on disc as DICOM not just the report, and the operative note from Sep 2024.
Slide requests run one to three weeks, and most centres will not schedule until material arrives. Assemble the packet once — everyone asks for the same thing.
The Milken Institute guide tabulates eight major LMS chemotherapy trials. Five first-line trials were negative. One first-line combination came back positive: trabectedin plus doxorubicin — exactly what the 29 July plan names.
That does not mean the plan is settled. It means the useful questions are about sequencing and trials, not about substituting the drug.
Two trials found advanced uLMS patients did not benefit much from nivolumab or pembrolizumab, even combined with chemotherapy. The tumour environment physically blocks immune cells from reaching it, so releasing the brakes on T cells has nothing to work with.
Someone will suggest immunotherapy. This is the reason to say no.
LMSproject (Count Me In, with the Broad Institute) and the Rare Cancer Research Foundation both let a patient contribute tumour tissue directly. No cost, no gatekeeper, and no need for a research centre to sponsor her.
Sarcoma centres have sarcoma pathologists, sarcoma medical and surgical oncologists, and a sarcoma-specific tumour board. A general oncology practice may see very few uterine LMS cases in a year.
Gynaecologic oncology and sarcoma oncology both have a claim. The best centres put both in the same room. UCLA, for example, places a gyn-onc directly on its sarcoma expert team.
The records request and the 29 July consult note are not here — they carry her name, date of birth and MRN, so they are shared directly rather than hosted.
Pathology reports — the original and the amended one, with any addenda.
Clinic notes from any doctor.
Lab results.
Radiology reports — the written report.
Anything a new doctor hands you.
A clear phone photo of a printed page is fine. It does not need to be a scan.
Imaging discs — the actual CT or PET scan files, not the report. Those run to hundreds of megabytes and have to travel physically. Keep the disc, do not mail your only copy.