Help - what should be happening

Hello Orchid26,

Thanks for getting in touch and welcome to our online community.

My name is Carole and I’m one of the Cancer Information Nurse Specialists on the Macmillan Support Line.

I’m sorry to read about your mum’s diagnosis, and that’s she’s not eating, is very underweight and has become too weak to attend hospital appointments.

It’s only natural to want to know what the usual pathway of treatment and care would be, but before discussing this, I want to make sure that your mum has been assessed by her GP or 111, and that her hospital team are aware of how she is.

We’d recommend that you, or your mum contacts her GP or NHS 111 today.

It’s important that new, worsening, or persistent symptoms are assessed, and treated if necessary.

If you think that she needs to be assessed straight away, she should call 999 or go to A&E.

Regarding pathway of care, this can be more complicated when doctors are not sure where the cancer started. This is often referred to as cancer of unknown primary (CUP) and although doctors cannot always tell where a cancer started, they often get a better idea about where it may have started, by finding out what type of cell the cancer cells are.

Sometimes other tests are done on biopsies which may give doctors more information about the primary site of the cancer.

You’ve mentioned that your mum is waiting on further results. We know how difficult this can be, but knowing when these are likely to be available, and what is likely to happen next can help.

It sounds as if your mum has been under the care of an orthopaedic team. It might be helpful to start there. You could ask them if your mum has been referred to a specialist team (some hospitals have a CUP or MUO (malignancy of unknown origin) team) and if she has been discussed at a multi-disciplinary team (MDT) meeting. If she has, it might be helpful to ask what they have recommended.

If you don’t have a contact number for your mum’s hospital team. It may be helpful to contact PALS (the patient advice and liaison service). They provide confidential advice, information and support about health related matters.

Regarding referral to Macmillan, there are different types of Macmillan Nurses. In the hospital, they may specialise in one type of cancer, so it would be helpful to know what speciality your mum is currently under. These nurses are employed by the NHS, and there may be a clinical specialist nurse who is not a Macmillan Nurse.

In the community, Macmillan Nurses might be called palliative care nurses, and work closely with GPs and district nurses, giving advice about symptom management and offering emotional support. Your mum’s GP should be able to arrange for a referral if they think it’s appropriate.

I hope this is helpful.

Please don’t hesitate to get back in touch if you have further questions, or you are welcome to give us a call on the Support Line. We often find that we can give more detailed information after talking, as it allows us to ask questions about individual situations. We are open every day between 8am and 8pm. You can chat to us online, if you prefer.

Sending my best wishes,

Carole

Our ref: KE