Lymphoedema and neuropathy

Hello Teresa,

Thank you for getting in touch. My name is Helen, I’m one of the Cancer Information Nurses on the Macmillan Support Line.

Welcome to the online community. I see you have joined several groups and hope you have found the community warm and informative.

I was saddened to hear how much of an impact the pain and swelling your husband is experiencing in his hands has had.  

Being in pain risks his emotional resilience becoming undermined, and being unable to play the piano and guitar must be particularly difficult as these are likely the things that helped keep his mental health buoyant.

Peripheral neuropathy can be a side-effect of the chemotherapy used to treat bowel cancer whereas lymphoedema tends to be related to surgery i.e. the removal of lymph nodes making lymph drainage sluggish and causing the tissues to become swollen.

Broadly speaking, lymphoedema is not commonly experienced as a result of chemotherapy. As your husband’s team have said that his symptoms are due to chemotherapy, it is more likely they are referring to peripheral neuropathy than to lymphoedema.  

However, it’s still worth considering other causes, such as a Vitamin B12 deficiency. I know your husband has some issues with the GP surgery but might it be possible to speak to another GP to discuss getting some basic bloods (including Vitamin B12) checked?   

Cancer Research UK has some particularly helpful information on the ways in which peripheral neuropathy may be improved. There are medications that have shown a benefit, but again, these will need to be discussed and prescribed by the GP. I do hope your husband feels he can pursue this, despite what sounds like a very difficult experience around his diagnosis.

Practical things, such as keeping hands warm by wearing gloves in cold weather or when working with his hands – for example, when gardening or washing up, might prevent a worsening of his symptoms., and if his hands are swollen, he might benefit from a moistening cream, such as E45, to prevent skin breaks.

Seeking psychological support may help reduce the anxiety, tension and fear caused by the pain, and make it easier to cope with. Macmillan has a free counselling service to which your husband is sincerely welcome to refer himself for additional help.

I hope some of these suggestions are going to be a benefit, Teresa. You might consider calling us to chat through the situation and it would help ensure that the information we have given is appropriate for your husband’s circumstances.

You can phone us on the following number. The Macmillan Support Line offers practical, clinical, financial and emotional support. You can call us free from landlines and from most mobile phone networks on 0808 808 00 00, 7 days a week, 8am – 8pm.

Of course, if you prefer, you can get back in touch via our online community or by email or webchat.

Best wishes, Helen

Cancer Information Nurse Specialist 

Ref HM/SH

Thank you so much Helen for your honest and helpful reply. I think a blood test with a different GP will be our first port of call to check B12. I will also call your support line just to clarify a few things. Thank you for everything you do. This site is an invaluable support system as it often feels like there is no other source of help/info in between hospital appointments.