My mother was diagnosed last year with Lymphoma. She had a PET scan early December. Her radiotherapy still has not started. Please can anyone tell me their experience, surely it should have started by now please. Thank you.
My mother was diagnosed last year with Lymphoma. She had a PET scan early December. Her radiotherapy still has not started. Please can anyone tell me their experience, surely it should have started by now please. Thank you.
Hi Beverleykim
Thank you for getting in touch. My name is Fiona and I’m one of the Cancer Information Nurse Specialists here on the Macmillan Support Line. It’s good to see you here on the Online Community, we hope that you find it a supportive space.
NHS England has a treatment target time of 62 days from the hospital receiving your mum’s referral, however we know that these are just targets and that sometimes additional tests can delay this further. Cancer Research UK has further information about target times in other parts of the UK.
Your Mum should have been given contact details for her Haematology Clinical Nurse Specialist (sometimes called a Macmillan Nurse) who should be her first point of contact if she has any questions or concerns. It would be useful to give them a call to discuss her treatment plan and when she can expect it to start. If your Mum gives you consent to act as her advocate you could make this call for her.
It’s always worrying when treatment hasn’t started. It’s common to think that the cancer is spreading, however we do know that most cancers tend to be slow-growing. The stage and grade of your Mum’s lymphoma will have been taken into account when planning her treatment.
If this doesn’t help she can escalate her concerns. There is information here about how to discuss your concerns and raise a complaint. Hospitals in England have a Patient Advice and Liaison Service (PALS) who can act as advocates and provide support with issues like these. Other parts of the UK have different support in place.
Macmillan offer a tailored email support service for both people with cancer but also for someone supporting someone with cancer. We will send you regular emails to support her through her new diagnosis and beyond which might be helpful.
Looking after someone close to you with cancer can be hard. It is important to look after yourself too. You might find it useful to join one of the forums; we have a Family and Friends forum and you may also find support from Lymphoma Action.
Some people also find it helps to talk though their concerns, so please do ring us if you think this would help. Our telephone number is 0808 808 00 00 (8am-8pm every day).
Warm wishes
Fiona S
Ref: FS/AON
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.
