Ct scan results

Hello Jonesyjones,

Thanks for getting in touch and a warm welcome to the Online Community. I’m Heidi one of the Cancer Information Nurses here on the Macmillan Support Line.

Thank you for your question about guidelines for the frequency, types of scans and expected timeline of receiving results.

I am sorry that your results are delayed and it is understandable that you would want to find out more about this. Waiting for results can be distressing, especially if they are prolonged.

You have done all the right things by questioning this, it seems as though the delays as you say are due to the capacity of the hospital.  

The BMJ Best Practice is a clinical decision support tool for health professionals in the UK. The support tool uses guidance from the National Institute for Health and Care Excellence (NICE).

The BMJ has this information about monitoring for metastatic breast cancer –

Monitoring during treatment is important both to determine treatment efficacy and to detect adverse effects. The monitoring process should consider patient preference through shared-decision making.

Monitoring includes imaging studies such as computed tomography scan, magnetic resonance imaging, x-rays, positron emission tomography scan, blood biomarkers, full blood count, platelet count, and liver panel, depending on the site of disease. Assessing the number of circulating tumour cells before and after treatment is also performed in some centres to assess treatment response.

Monitoring asymptomatic patients depends on the site of disease. Imaging the area of metastatic disease regularly will determine whether the disease is stable or progressing.

Unfortunately, NICE guidelines don’t set out a specific guideline for frequency or timelines in receiving results however do have this information for monitoring bone metastases –

Monitoring disease status

1.1.7

Do not use bone scintigraphy to monitor the response of bone metastases to treatment. [2009]

1.1.8

Do not use PET-CT to monitor advanced breast cancer. [2009]

Although there are clearer guidelines about monitoring following an initial diagnosis of early or locally advanced breast cancer, there would always be some degree of tailoring this to an individual situation as needed.

 Breast Cancer Now have this information about monitoring treatment in secondary breast cancer –

 Scans

 Scans may not always be done routinely but may be planned by your oncologist to see how the secondary breast cancer is responding to a new treatment or if you have new or worsening symptoms.

 If you’re taking part in a clinical trial you may have scans more frequently, depending on the requirements of the trial.

 I have included our information about understanding your cancer care rights and raising your voice toolkit. I hope it might be helpful, especially if you are concerned about any aspects of your care.

It is okay to check in with your specialist team or nurse regarding results in case they come through sooner. I hope they do as it does seem like a long time to be waiting and this can be very stressful. It is important that your specialist team understand how this is making you feel.

 In terms of going forward please do feel comfortable asking about how you will be monitored, and how frequently. This is so you can have clear expectations and understanding of the reasoning behind any decisions made about your care.  

 We have a very welcoming online community and secondary breast cancer forum, sometimes talking to others that understand can be supportive. You can also check our webpage to find details of support and information organisations in your area.

Breast Cancer Now living with secondary cancer groups can provide specialist information and support. You can talk to their breast care nurses about the support and services they provide.

Dealing with cancer can be a very emotional time and you might find it helpful to read our web pages about emotional support.

If you felt talking things through would be useful, please don’t hesitate to contact us on 0808 808 0000, we are here every day from 8am to 8pm and would welcome your call.  

I am sorry I couldn’t find a specific answer for you, but I hope the information might be a starting point. Please don’t hesitate to get in touch if we can support you further.

Best wishes and take care.

Heidi

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. 

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