Human T-cell lymphotrophic virus

Hi Evamaria,

My name is Gail and I’m one of the cancer information nurses on the Macmillan Support Line

Thank you for getting in touch with such a thoughtful question. I can hear how carefully you are trying to understand the possible link between HTLV and your partner’s very rare diagnosis, and it’s completely natural to want clear answers.

Human T-cell lymphotropic virus (HTLV-1) is a virus that some people carry without ever developing problems.

Gamma-delta cutaneous T-cell lymphoma is different. It is an extremely rare type of cutaneous T-cell lymphoma (CTCL), and at present there is no clear evidence that HTLV causes this type of lymphoma. If your partner had been tested for HTLV and found positive, he would normally have been told about this, as it has implications for his care and for preventing onward transmission.

If you would like certainty, the best step would be to ask his consultant or clinical nurse specialist directly whether HTLV testing was carried out at diagnosis, and whether it has any relevance to his situation. You might want to ask them if he was ever tested for HTLV at the time of his lymphoma diagnosis, and whether there is any recognised link between his lymphoma and adult T-cell leukaemia/lymphoma, which is the condition more commonly associated with HTLV.

I hope this reassures you that the diagnosis itself does not mean he is an HTLV carrier. You may also find it helpful to look at Leukemia UK, which supports people affected by blood cancers and funds vital research. Another good source of information is Lymphoma Action UK the UK charity dedicated entirely to lymphoma. They offer clear information, helplines and support for people with all types of lymphoma, including rare subtypes such as cutaneous T-cell lymphoma.

Please remember you are not alone — if you’d like to talk this through further, you can call us on the Macmillan Support Line on 0808 808 00 00, 7 days a week, 8am–8pm.

The Support Line offers practical, clinical, financial and emotional support. You can also reach us by email or webchat, or visit our Online Community to connect with others affected by cancer.

Warmest wishes,

ref:amcg/ad

Dear Gail,

thank you ever so much for your very clear and reassuring reply to my question.

I shall definitely speak to the consultant about this, but I feel much better about it now.

I have had a look at Lymphoma action too. All indeed very helpful and informative.

Many thanks again,

Evamaria