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Concrete next steps

This week (by about 14 October 2026)

  1. Get the diagnosis, stage, treatment-indication status and plan in writing. Ask which clinic and which doctor own follow-up.
  2. Get copies of the PAD and flow-cytometry reports for both nodes, with their numbers. Check them against the checklist in section 3.7.
  3. Ask for a named contact nurse (fast vårdkontakt) and activation of Min vårdplan.
  4. Ask for a ny medicinsk bedömning, with the referral marked as Region Skåne-initiated care, sent to a named CLL team at Karolinska or Uppsala, and asking whether the receiving team wants the slides.
  5. Book the PCV20 pneumococcal vaccine at the vårdcentral. Note that Skåne's influenza and COVID-19 campaign opens in November.
  6. Order records (GDPR form and Journalservice), and write a one-page timeline plus a medication and supplement list.

Within 2–4 weeks

  1. At the haematology visit, confirm whether any iwCLL criterion is met. If none is, get the surveillance plan in writing: interval, tests, and the symptoms that should prompt a call.
  2. Ask for quantitative immunoglobulins and hepatitis B serology.
  3. Settle Shingrix: given by the clinic as part of care, or self-paid. Settle any other vaccines that apply: RSV if aged 60 or over, TBE if in a risk area, hepatitis B, and a diphtheria-tetanus booster.
  4. Confirm a haematopathology review of the nodes, at Lund and/or by the second-opinion centre.
  5. Decide with the haematologist whether to test IGHV now, purely for counselling, or wait until before treatment.
  6. Use Cancerlinjen, Blodcancerförbundet or cancer rehabilitation (counsellor, rehabilitation coordinator) if the uncertainty weighs on him.

Before any treatment decision

  1. Repeat FISH and TP53 sequencing, close to the start of treatment, and ask for the VAF and the lab's detection limit. Test IGHV once. Have a CT if venetoclax is considered, an ECG and blood-pressure work-up if a BTKi is considered, and hepatitis B, hepatitis C and HIV serology.
  2. Complete the second opinion. Ask about CLL18/MOIRAI at Lund.
  3. Ask for a pharmacist's medication review. Finish inactivated vaccines at least 2 weeks before treatment starts if possible.
  4. Work through the "before any treatment" questions in section 18, including the VO start order and the evidence for AV if TP53 is aberrant.

Ongoing

  1. Keep training. Report fever and the warning signs promptly.
  2. Do regular skin checks and take part in cancer screening.
  3. Keep vaccinations up to date every year.
  4. Several Swedish sources are older than events since January 2026: pirtobrutinib approvals and subsidy, the pneumococcal schedule, TBE advice and NT-rådet's Shingrix statement. When advice differs between clinicians, ask which dated source they rely on.

[I] Three takeaways

  • What matters most now is the quality of information and early protection, not the drug. Integrated pathology, the right genetic tests on the right sample, and vaccination before any immunosuppression all count for more at this stage. Drug choice can wait for a documented indication, and only TP53 and IGHV change it.
  • The tools exist; the friction is administrative. The Swedish system provides a statutory second opinion, a contact nurse, SVF lead times and a written regional routine. The sticking points are paperwork: a tick-box on the referral form, pathology reports that do not appear in 1177, and biobank rules that only institutions can operate.
  • "Who is the best doctor?" becomes "which team?" SUS haematology's CLL leads for care, Lund haematopathology for the tissue, a national CLL team for the independent opinion, and Copenhagen only if the disease proves unusual.