Bladder cancer: Immunotherapy

Hello Lynn,

Thank you for getting in touch on our Online Community. My name is Helen, I’m one of the Cancer Information Nurses on the Macmillan Support Line.

I note that you have joined Macmillan’s bladder cancer forum and hope you are finding the group supportive and helpful.

I was glad to read that you have recovered well from your radical cystectomy but was sorry to learn that your follow-up consultation was not at all as you expected and you have come away with more questions than answers.

I will do my best to answer your queries, but because I don’t have access to your NHS notes, some of the information you need is not available to me. However, I would hope that you have been allocated a urology nurse specialist to support you through your diagnosis and operation. If so, they will have access to your notes, scans and also to your consultant for those questions I can’t answer. If you are not sure if you have a nurse specialist then you can call the secretary of your consultant to ask.    

I hope the following is going to be helpful, Lynn.

Immunotherapy is a type of treatment that teaches the body’s immune system to fight the cancer. It differs from chemotherapy which kills cancer cells directly. Immunotherapy trains a person’s natural immune defence system (the T- cells) to recognise the cancer cells and kill them. 

There are different types of immunotherapies, and one is called a checkpoint inhibitor. A checkpoint inhibitor blocks the action of a protein that is encouraging the cancer to develop. PD-1 is one such protein. So, an immunotherapy treatment that is a checkpoint inhibitor targets and blocks the PD-1, triggering the T- cells to find and kill cancer cells.

I think you have been offered the opportunity to participate in a clinical trial which is looking at the additional benefit of a checkpoint inhibitor immunotherapy treatment. There are several trials being carried out at Christie’s Hospital that are looking at the role of immunotherapy for patients with a bladder cancer, but I am not sure which study you have been offered to be able to answer your question about the length of time it has been running or if it includes a placebo.  

However, your consultant should have given you a Patient Information Sheet. This is a clinical trial requirement for anyone offered the opportunity to participate in a study. The patient information sheet will outline the study, its objectives and why you have been offered the opportunity to participate. It will explain if the study includes a placebo - this will be explicit in the trial paperwork.  

In addition, each cancer clinical trial is supported by a team of clinical trial nurses and their names and contact details should be on the footer or header of the trial documentation. This means that you have the opportunity to ask about the study and what it might mean for you.  

If you do not have printed literature about the study, Cancer Research UK have open and recruiting bladder cancer trials listed on their Find a Trial page, as does Fight Bladder Cancer. However, I must stress Lynn, you should have been given trial documentation at the point you were offered the study as you cannot give informed consent to participate without it.

A clinical trial has to be completed before any trial data can be available – so it is unlikely that the study you have been offered will have data if it is still open and recruiting. Again the trials’ nurses will be able to talk this through with you.

You have asked what the standard treatment and follow-up might be expected with a bladder cancer, and I should say at this point that there are several sorts of bladder cancers with different treatment pathways and follow-up guidance. Your urology nurse specialist should be able to explain your type of bladder cancer and the standard treatment and follow-up – including the scanning protocol.

Lynn, I know you feel overwhelmed at the moment, and I am not surprised. I wonder if you would consider giving us a call on the support line, just to talk through some of the issues you have been dealing with? We would be most happy to speak with you.

The Macmillan Support Line offers practical, clinical, financial and emotional support. You can call us free from landlines and from most mobile phone networks* on 0808 808 00 00, 7 days a week, 8am – 8pm.

I do hope this is helpful.

Best wishes, Helen

Cancer Information Nurse Specialist 

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or email us. 

Ref HM/HC