Immunotherapy.

Dear Just Jim,

Thank you for joining our online community. I hope you find it helpful. My name is Denise, and I am one of the Cancer Information Nurse Specialist’s.

I am sorry to read you have been diagnosed with lung cancer and had to undergo immunotherapy.

As we do not have access to NHS records it is difficult for us to know what exactly is planned by your team but usually after finishing your treatment your consultant is likely to request repeat scans and blood test and arrange a follow up appointment with you to assess how effective your treatment has been, also known as a response assessment.

In some cases, if the tumour has shrunk but not completely gone this is called partial response. If no changes are seen this is usually referred to as stable disease. In those cases, the team may decide to monitor patients for a while, this is called surveillance. They also may recommend further treatment too.  Depending on the results the options can vary. In some cases, if there was no response to the current treatment there may be other lines of treatments available but that would be up to your treating team to decide what to offer next if there is another option. If there are no other treatment available patients may be offered palliative care.

Unfortunately, without knowing all the results we are unable to confirm what might happen and would encourage you to contact your Lung Cancer Nurse Specialist (CNS).  

You CNS can speak to your consultant and in doing so may be able to confirm if there are other lines of treatment available. They can also confirm timelines for further scans or appointments you may have upcoming.

I hope this information helps. Please do get back in touch with us if you have further questions. The Macmillan Support Line offers practical, clinical, financial, and emotional support. You can call us free from landlines and most mobile phone networks on 0808 808 0000, you can also chat to us or email us 7 days a week, 8am – 8pm.

Kind Regards,

Denise

Cancer Information Nurse Specialist

Ref: DK/MD

Hi a little bit more information I have metastatic throat cancer that has returned in my lung 

    Thank you for your help 

Dear JustJim,

Thank you for the further information. My name is Gemma, and I am one of the other cancer information nurse specialists here at Macmillan Cancer Support.

I understand that the tumour in your lung spread from an original tumour in your throat, and that you have been having immunotherapy to treat it.

What happens next is similar, no matter where the cancer started from.

It is usual to have another scan after ALL the immunotherapy is complete as Denise said.  This will let your hospital multi-disciplinary team (MDT) know how effective the treatment has been, and can plan what happens next.

This might be starting a different treatment or clinical trial. A break from treatment, but still having check ins with the hospital, or appointments with other hospital specialists to help with any symptoms you may have. For example a speech and language therapist (this link takes you to Glasgow based information, but explains the job role well) or an occupational therapist.

It may be that you will have combined care from your hospital team and GP and district nursing services. But it all really does depend on the final set of results after treatment ends.

Waiting for results can be an extremely anxious time, regardless of how many times you have to do it. There is no right or wrong way for you to feel while you wait. It may reassure you a bit that it is common to feel scared, worried, and anxious at this time.

If you haven’t reached out to your hospital team, I echo what Denise suggested, that you call them to ask what may be likely for you. As they have the access to your hospital records that we don’t, they may be able to reassure you more.

If you think it may be helpful to have the support of others in a similar situation to yourself, you might like to join one of the supportive forums here in our friendly online community, such as our Head and Neck cancer forum.

If you think it may be helpful to chat things over in more detail with one of the nurses here please do give us a call. We would be glad to support you in any way we can.

Gemma J,

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 send us an email. 

Ref/ PN/GJ

Thank you for your time