Hodgkin lymphoma
Prepared with OnCo (onco.cc/prep/hodgkin-lymphoma/). Orientation, not medical advice; your team knows your case.
My details
What I know, what is unclear, changes to discuss
Saved in this browserMy questions
28 on the sheet- 1.Who is my clinical nurse specialist, and what is the number to ring at two in the morning?
- 2.Exactly which lymphoma is this, is it fast-growing or slow-growing, and what stage is it?
- 3.Has the biopsy been reviewed by a specialist lymphoma pathologist, and is the sample big enough for all the tests?
- 4.How long will the results take, and what happens in the meantime?
- 5.Has my case been to the multidisciplinary team meeting, and how will I hear what was agreed?
- 6.Will this treatment affect my fertility, and can I see a fertility specialist before it starts?
- 7.Which vaccinations should I have before treatment starts, and which must I not have?
- 8.Will I need a port or a PICC line, and when would it go in?
- 9.Am I early stage or advanced, favourable or unfavourable, and what put me in that group?
- 10.Will I have a scan after two cycles, and what would a negative or a positive result change?
- 11.If radiotherapy is part of the plan, which part of me is in the field, and what does that mean in thirty years?
- 12.Am I being offered the gentler regimen or the escalated one, and what would change your recommendation?
- 13.Which late effects does my particular treatment carry, and what will be checked, how often, and by whom?
- 14.If I had radiotherapy above the waist as a young woman, am I in the breast screening programme?
- 15.Will my thyroid be checked, and how often?
- 16.Is there a late effects clinic, and who looks after this once I am discharged from haematology?
- 17.Is there a clinical trial open to me, here or at another hospital, and would you refer me?
- 18.What is the aim of this treatment: to cure the lymphoma, or to control it?
- 19.What should make me ring you rather than wait for the next appointment?
- 20.How many days do I actually have before treatment must start?
- 21.Will I be referred to a fertility clinic on the NHS, and is there an age limit here?
- 22.Should I plan to work through this, and what should I tell my employer?
- 23.Who here can go through sick pay and benefits with me, and can I be referred now rather than later?
- 24.Can I have my treatment summary in writing, for me and for my general practitioner?
- 25.Will I be having regular scans in follow-up, and if not, why not?
- 26.What are the late effects of the treatment I had, and what screening follows from them?
- 27.What should I watch for at home, and at what point do I ring rather than wait?
- 28.Can I have a carer's assessment, and what help is there for me?
The words I may hear
- Overall survival (OS): Overall survival (OS) is how long patients live, full stop.
- Progression-free survival (PFS): Progression-free survival (PFS) is how long patients live without their cancer growing.
- Second cancers after radiotherapy: Radiotherapy can itself cause a new cancer in the treated area, typically ten to thirty years later.
- Breast cancer after chest radiotherapy given young: This is the second cancer with a real screening programme attached, and the one most worth asking about by name.
- The UK very high risk breast screening protocol after chest radiotherapy: England runs a named screening programme for women who had radiotherapy to breast tissue when young, with exact ages and tests set out in its own documents.
- Escalated chemotherapy or ABVD in advanced Hodgkin lymphoma: more cures, more late harm, and what the interim scan changed: Advanced Hodgkin lymphoma can be treated with a gentler combination that fewer people are cured by first time, or a harder one that cures more but leaves more lasting harm.
- The Hodgkin microenvironment: when the cancer cell is the minority: In Hodgkin lymphoma most of the swollen lymph node is not cancer.
- ABVD, BEACOPP and BrECADD (Hodgkin lymphoma regimens): The chemotherapy recipes that cure most Hodgkin lymphoma: ABVD (four drugs, the long-standing standard), the more intensive German BEACOPP, and newer versions that replace bleomycin with brentuximab vedotin (A+AVD) or add nivolumab (N-AVD).
- Skin cancer after cancer treatment: Skin cancer is the commonest second cancer after almost any treatment, and the commonest one left out of the counts, because registries record non-melanoma skin cancers inconsistently or not at all.
- Thyroid cancer after neck radiotherapy, and whether to look for it: The thyroid is among the most radiation-sensitive tissues there is, and neck or upper chest radiotherapy raises the risk of thyroid cancer for decades.
Tests and results to bring
Biomarker results to ask for: Interim PET (Deauville), CD30, PD-L1 (9p24.1 amplification), Interim PET (Deauville score) after cycle 2, CD30 and CD15 on Reed-Sternberg cells; CD20 in NLPBL, 9p24.1 (PD-L1/PD-L2) amplification, EBV status (EBER), International Prognostic Score (IPS), Baseline metabolic tumour volume, ctDNA (research; PhasED-seq), Soluble CD30 (research).
Scans and tests linked to this cancer: Breast cancer after chest radiotherapy in childhood, and the screening that follows, Cytogenetics and FISH, FDG PET, Histopathology & immunohistochemistry, Mammography & tomosynthesis, Multidisciplinary tumour boards.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Early stage, favourable (I-II): ABVD × 2 + involved-site radiotherapy 20 Gy (HD10), or PET-adapted omission of radiotherapy after 3 cycles if PET-negative (RAPID, HD16) accepting ~5% lower PFS; AHOD2131 tests BV-nivo. (Doxorubicin, PET-adapted (response-adapted) therapy, IMRT / IGRT (modern external beam), Deauville five-point scale, AHOD2131 (COG / NCTN))
- Early stage, unfavourable (I-II bulky or risk factors): ABVD × 4 + ISRT 30 Gy, or escalated BEACOPP × 2 + ABVD × 2 + RT (HD14/HD17 PET-guided); nivolumab- or BV-containing regimens in trials. (Doxorubicin, PET-adapted (response-adapted) therapy, IMRT / IGRT (modern external beam))
- Advanced stage: Nivolumab-AVD (2026) or BV-AVD; PET-adapted. (Nivolumab, Brentuximab vedotin, FDG PET)
- Advanced stage (III-IV), age ≤60: Nivolumab-AVD × 6 (S1826; approved March 2026, no routine radiotherapy) or BV-AVD × 6 with G-CSF (ECHELON-1); in Europe PET-guided BrECADD × 4-6 (HD21) or eBEACOPP; PET-adapted ABVD/AVD (RATHL) where novel agents unavailable. (SWOG S1826, Nivolumab, ECHELON-1, Brentuximab vedotin, GHSG HD21, RATHL, PD-1 blockade + AVD chemotherapy)
- Advanced stage, age >60: Nivolumab-AVD (S1826 included older adults with less toxicity than BV-AVD); sequential brentuximab → AVD → brentuximab; avoid bleomycin; ABVD/AVD with dose adaptation. (SWOG S1826, Nivolumab, Brentuximab vedotin, Caution: bleomycin lung toxicity, especially with brentuximab or G-CSF)
- Paediatric (COG / EuroNet): Risk-adapted OEPA/COPDAC (EuroNet-PHL-C2) or ABVE-PC with brentuximab (AHOD1331, EFS benefit) and PET-guided radiotherapy omission; S1826 and AHOD2131 now enrol from age 12 or 5. (Brentuximab vedotin, PET-adapted (response-adapted) therapy, Children's Oncology Group (COG), AHOD1331, EuroNet-PHL-C2)
- Choosing treatment in Hodgkin lymphoma: stage, risk factors and the interim PET: Three inputs. Stage by PET-CT reported with the Lugano classification. Risk factors, which differ by group: the German Hodgkin Study Group counts a large mediastinal mass, extranodal disease, a raised erythrocyte sedimentation rate and three or more nodal areas; EORTC counts a large mediastinal mass, age 50 or over, a raised sedimentation rate and four or more nodal areas. And the interim PET after two cycles, scored 1 to 5 on the Deauville scale, which is used to intensify treatment in patients who have not responded and to reduce it in those who have. That last step, PET adaptation, is the structural idea behind modern Hodgkin treatment. RATHL showed that bleomycin can be dropped from cycles 3 to 6 in patients whose PET after two cycles is negative, with three-year progression-free survival of 85.7 per cent for continued ABVD against 84.4 per cent for AVD, which removed lung toxicity from most patients' treatment. EORTC H10 showed the reverse direction: in patients whose early PET was positive, switching from ABVD to escalated BEACOPP with involved-node radiotherapy raised five-year progression-free survival from 77.4 to 90.6 per cent (hazard ratio 0.42). Before the first cycle: lung function tests if bleomycin is planned, echocardiography, hepatitis B, hepatitis C and HIV testing, and a fertility conversation, which in a disease of young people is not optional. (RATHL, Deauville score and PET-adapted therapy, Deauville five-point scale, FDG PET, PET-adapted (response-adapted) therapy, Lugano classification / Ann Arbor staging, ABVD, BEACOPP and BrECADD (Hodgkin lymphoma regimens), Fertility before lymphoma treatment: what to ask for, and when, Hepatitis B reactivation before rituximab and other anti-CD20 antibodies)
- First relapse, transplant-eligible: Salvage (ICE, DHAP, GVD, BV-nivolumab or pembrolizumab-GVD) → PET-negative → high-dose therapy and autologous transplant; brentuximab consolidation for high-risk (AETHERA); PD-1 maintenance in trials. (Autologous stem cell transplant (high-dose therapy), Brentuximab vedotin, Nivolumab, Pembrolizumab, AETHERA)
- Relapse after transplant or transplant-ineligible: Pembrolizumab (KEYNOTE-204) or nivolumab; brentuximab vedotin if not yet given; BV + nivolumab; allogeneic transplant for fit patients after response; CD30 CAR-T in trials; palliative radiotherapy or bendamustine. (Pembrolizumab, KEYNOTE-204, Nivolumab, CheckMate 205, Brentuximab vedotin, CD30 CAR-T for multiply relapsed Hodgkin lymphoma)
- Survivorship: Lifelong surveillance for cardiac disease (anthracycline, mediastinal RT), breast cancer screening from 8 years after chest RT in women, thyroid and lung checks, fertility counselling before therapy. (Cardio-oncology, Mammography & tomosynthesis)
- Survivorship after Hodgkin lymphoma: what the cure costs, and what is watched for: Most people treated for Hodgkin lymphoma are cured and then live for decades with the consequences. Anthracyclines cause cardiomyopathy. Mediastinal radiotherapy causes coronary and valve disease, and, twenty to thirty years later, breast and lung cancer inside the irradiated field; the lung cancer risk multiplies with smoking rather than adding to it. Neck radiotherapy causes hypothyroidism in a large minority. Procarbazine and other alkylators cause infertility and a small excess of myelodysplasia and leukaemia. Bleomycin causes lung fibrosis. The long-term German Hodgkin Study Group series of 471 patients with the nodular lymphocyte-predominant subtype makes the arithmetic plain: ten-year overall survival was 92.1 per cent, second cancers occurred in 10.2 per cent, and of 43 deaths only 10 were from the lymphoma, against 20 from second cancers and 13 from conditions possibly related to treatment. Follow-up therefore includes cardiovascular risk assessment, thyroid function after neck or upper mediastinal radiotherapy, echocardiography at intervals, active smoking cessation support, and, in England, automatic referral into the NHS breast screening programme's very high risk pathway for women who had radiotherapy to breast tissue for Hodgkin or non-Hodgkin lymphoma between the ages of 10 and under 36. All of it is the reason treatment keeps being de-escalated. (Late effects of Hodgkin lymphoma treatment, and the follow-up that answers them, Late effects and survivorship toxicity, Secondary malignancy (therapy-related cancer), Cardiotoxicity (LVEF decline, cardiomyopathy), Survivorship care and late-effects surveillance, Strain echocardiography (global longitudinal strain), Long-term follow-up of nodular lymphocyte-predominant Hodgkin lymphoma treated in the GHSG HD7 to HD15 trials)
From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.