Bone cancer symptoms with peripheral neuropathy

Hi, my name's Steve.

I have metastatic bone cancer (low grade) and also peripheral neuropathy. I don't know whether my symptoms are from the bone cancer or from the neuropathy. Who I mention it to depends on the likely cause.

The bone cancer is spread throughout every bone but it is low grade and I'm not expecting to need treatment for some time. I was supposed to see the cancer specialist last month (after a four month referral) but my hospital is so chaotic, I have just found my name hasn't been added to the waiting list. Now my name's on the list, I'm expecting to have to wait another four months but the hospital can't tell me how long I'll have to wait *sigh* Since my cancer is low grade, I don't want to take the place of someone whose need is more urgent.

Increasingly, I have pain all over when lying in bed but more so on the pressure points (hips). The pain started nearly a year ago but it doesn't worry me during the day. But I also have neuropathy pain, for example tingling feet and the surface of my legs, which I feel during the day but sometimes during the night. I can ask my doctor to increase my dosage of amitriptyline to calm down the neuropathy pain but will it calm down the pain on the pressure points and do I need to see the cancer specialist?

I'm not losing weight but I have been sweating a lot at night for the past two months, for which there could be lots of reasons, including my angina medicine.

I'm 80 years old and am still active (going to the gym in a few minutes) and I'm philosophical about all of this (but cross about the state of the health service in general).

  • Hello Steve and thank you for posting. 

    Unfortunately, you need a medical opinion on what is causing the pain and therefore the best course of action. I am sorry you have been waiting so long and it may be worth in the meantime trying to talk it through with your GP or specialist nurse (CNS) if you have one.

    If you don't already know them, your local palliative care (sometimes known as the Macmillan team) is experienced in symptom management and therefore pain control. They may be a bit more accessible than your oncologist as their service is in the community and not through the hospital system. Do talk it through with your doctor as they can refer you to this team if needed.

    Peripheral neuropathy and nerve changes do respond to nerve painkillers like amitriptyline so an increase may well help, but it may be there is also something else that can be added in to help the 'pressure point' pain. Sometimes radiotherapy can also be used to palliate symptoms, but it depends on the cause. Treating pain and getting this right for you is important for your quality of life, so I do hope this gets sorted for you soon.

    Take care and if you find it helpful to talk things through with one of the nurses on our helpline the number to call is Freephone 0808 800 4040. The lines are open from 9 am till 5 pm, Monday to Friday.

    Sarah.