Skip to content

Recommended next steps

In the first week

  1. Get the diagnosis, stage, treatment-indication status and plan in writing. Ask which clinic and which doctor own follow-up.
  2. If lymph nodes were excised, get copies of the PAD and flow-cytometry reports for each node, with their PAD numbers. Check them against the pathology checklist in The diagnosis.
  3. Ask for a named contact nurse (kontaktsjuksköterska / fast vårdkontakt) and for Min vårdplan to be activated.
  4. If you want a second opinion (ny medicinsk bedömning), ask for one. The referral should go to a named CLL team at Karolinska or Uppsala, be marked as care on Region Skåne's initiative, and ask whether the receiving team wants the slides.
  5. Book the PCV20 pneumococcal vaccine at your health centre (vårdcentral). Skåne's influenza and COVID-19 campaign opens in November.
  6. Order your records (through Journalservice or the GDPR form), and write a one-page timeline and a list of your medicines and supplements.

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 whether the clinic will give Shingrix as part of care or whether you pay for it yourself. Settle which other vaccines apply: RSV if you are 60 or over, TBE if you are in a risk area, hepatitis B, and a diphtheria–tetanus booster.
  4. If lymph nodes were excised, confirm that a haematopathologist reviews them, at Lund and/or at any 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 you.

Before any treatment decision

  1. Repeat FISH and TP53 sequencing close to the start of treatment, and ask for the VAF (variant allele frequency) and the laboratory's detection limit. Test IGHV once. Have a CT if venetoclax is considered, an ECG and a blood-pressure check if a BTK inhibitor is considered, and hepatitis B, hepatitis C and HIV serology.
  2. Complete any second opinion that is under way. Ask about CLL18/MOIRAI at Lund.
  3. Ask for a pharmacist's medication review. If possible, finish inactivated vaccines at least 2 weeks before treatment starts.
  4. Work through the "before any treatment" questions in Questions for the doctor, including the start order for VO (venetoclax-obinutuzumab) and the evidence for AV (acalabrutinib-venetoclax) if TP53 is aberrant.

Ongoing

  1. 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 predate changes made since January 2026: pirtobrutinib approvals and subsidy, the pneumococcal schedule, TBE advice and NT-rådet's statement on Shingrix. When advice differs between clinicians, ask which source they rely on and how recent it is.

[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 right to a 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?" The CLL leads in SUS haematology for care, Lund haematopathology for the tissue, a national CLL team for the independent opinion, and Copenhagen only if the disease proves unusual.