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Executive summary: seven days of groundwork, no treatment decision yet

The first week should secure information, coordination and protection, not a treatment choice. [I] Nothing in the evidence suggests that a few weeks spent clarifying the diagnosis harms someone without a treatment indication. The Swedish standardised care pathway (standardiserat vårdförlopp, SVF) itself allows 26 calendar days from well-founded suspicion to a decision on active surveillance (aktiv exspektans) and 35 days to the start of drug treatment (SVF lymfom och KLL v3.3) [E]. If the clinic has already found a treatment indication, the same steps still apply, but they run alongside the pre-treatment work-up rather than before it.

Do in the next seven days:

  1. Get the diagnosis in writing. Patientlagen 3 kap. 7 § requires information to be given in writing if the patient asks (Patientlag) [E]. Ask for: CLL or SLL; the classification used; the clonal B-cell count in blood; Binet/Rai stage; whether any iwCLL treatment criterion is met; whether he is still in SVF; and the next step.
  2. Obtain the pathology report (PAD) and flow-cytometry report for both nodes. Check them against the checklist in section 3.7, especially proliferation centres, Ki-67, any large cells and how mantle cell lymphoma was excluded. Ask whether a haematopathologist (hematopatolog) reviewed the case and, if the diagnosis was made outside Lund, whether Lund pathology has seen it.
  3. Find out which clinic owns his follow-up. In the Malmö–Lund catchment, enlarged nodes without lymphocytosis are referred to the SUS oncology (lymphoma) clinic, while lymphocytosis goes to haematology; CLL at SUS is a haematology condition (AKO Skåne guideline, archived copy) [E]. Ask who will follow him long-term and whether a KLL-experienced haematologist is involved (section 15).
  4. Ask for a named contact nurse (kontaktsjuksköterska) and Min vårdplan. A fast vårdkontakt must be appointed if he asks (PL 6 kap. 2 §), and the national guideline says every KLL patient should be offered a named contact nurse and a written care plan (VP8.2 §18.1) [E].
  5. Start collecting records. Download notes, lab results and radiology reports from 1177 Journalen. Order PAD, flow cytometry, the medication and diagnosis lists, and images through the 1177 e-service Beställ utskrift från journal or Journalservice (0771-86 66 00, weekdays 9–12) (section 19).
  6. Book vaccinations before any treatment. One dose of the PCV20 pneumococcal vaccine is free at the vårdcentral in Skåne. Influenza and COVID-19 vaccination are free for people with blood cancer when Skåne's campaign opens in November. Ask the haematology clinic whether it will give Shingrix (section 12).
  7. Tell the treating doctor he wants a new medical assessment (ny medicinsk bedömning) under PL 8 kap. 1 §. Ask that the referral (remiss) go to a named CLL team, include the PAD numbers, and ask the receiving team whether a pathology review is wanted. Ask that the Remiss/Betalningsförbindelse be marked as care on Region Skåne's initiative, so travel is reimbursed (section 16).
  8. Ask when FISH, TP53 and IGHV will be done: now, or only before treatment, and in which laboratory (Lund runs all three in-house; sections 6 and 15).
  9. Keep exercising if he feels well and his blood counts allow it. Contact the clinic for fever of 38.0 °C or more, rapidly growing nodes, drenching night sweats, unintended weight loss or marked fatigue (sections 5, 11 and 13).
  10. Hold back on supplements, especially St John's wort and concentrated herbal extracts, until a treatment plan exists, and tell the team about everything he takes (section 11).
  11. Use support early: Cancerlinjen 010-199 10 10 (free and anonymous); Blodcancerförbundet 08-546 40 540 (peer support and a 2026 KLL brochure) (Cancerfonden; Blodcancerförbundet).

Avoid this week: accepting treatment without a documented iwCLL indication; withdrawing biobank consent for the excised tissue, which triggers its destruction under Biobankslagen 4 kap. 13 § (Biobankslag 2023:38); paying for a foreign consultation before the Swedish second-opinion route has been tried.

Numbers (1177 contact cards):

  • Hematologimottagning Lund 046-17 71 41
  • Hematologimottagning Malmö 040-33 34 00
  • Hematologimottagning Helsingborg 042-406 17 82
  • Hematologimottagning dagvård Kristianstad 044-309 17 53
  • Onkologimottagning 1 Lund (lymphoma) 046-17 75 20
  • SUS switchboard 046-17 10 00

Sources: 1177 Hematologimottagning Lund; 1177 Onkologimottagning 1 Lund.