Mastectomy nerve pain

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My left mastectomy with lymph node excision was 11/2022. It's been over 15 months ago & I'm still having intermittent pain in & around scar area on some days, it varies. Nerve pain: mostly burning sensation, scar area tightness, some tingling & occasional electric-shock-type pain. I've heard that the term for this is Post-mastectomy Pain Syndrome. I take some Gabapentin before bedtime (about 400-500mg). Other forms of pain management I use are: vibrating heating pad, or a wrapped cold pack, or essential oils massaged in scar area & left underside. These measures only work temporarily.

Also, the (mild form) lymphedema is an ongoing issue I contend with. Compression garments help a little: zippered compression shirt & a long sleeved compression sleeve & an underarm pad.

One other issue I'm having is wearing a sports bra which seems to aggrivate the nerve pain. It fits kind of snug but not real tight. Maybe I should just wear a looser bralette type? I also have a prosthetic that I used to wear in a mastectomy bra with pocket. But it caused same pain so I don't wear it anymore.

I'm thinking about asking my breast surgeon if I should be referred to neurologist for specialized diagnosis & treatment. Do you think that seeing a neurologist is advisable & would help at this point?

Denise K - Macmillan over 1 year ago

Dear Imchrisann,

Thank you for joining the Macmillan Online Community. My name is Denise, and I am one of the Macmillan Cancer Information Nurses.

I am sorry to read about your ongoing pain and difficulties post mastectomy. This must be very frustrating and difficult for you.

Pain is a common experience post mastectomy which does improve with time but having to deal with the pain for more than a year must be daunting. There are several reasons why people have ongoing pain after surgery and you can read more about it here.

Nerve damage is common and medications such as Gabapentin can help but they are not always effective and not for everyone. There are other types of medications for nerve damage you can try but unfortunately, they all need to be prescribed but your GP will be able to review your current medication and change this if needed. You can ask your GP if a neurology referral is now appropriate. As we do not have access to NHS medical records we can’t advise if this is appropriate or more can be done by your primary care provider.

I understand you have tried other ways to alleviate your pain and these only help for a short period of time. There are different methods which don’t involve drugs and if you wish you can read more about those here. The charity called Action on pain! may be also a good source for further information.

Lymphoedema can also be treated in different ways. If you have not been already, ask your Breast Cancer Nurse Specialist or your GP to refer you to a lymphoedema specialist nurse. The Lymphoedema Support Network (LSN) or the British Lymphology Society would be able to help you with what is available in your area.

The Breast Cancer Now charity has a guide to a well fitting bra and you can access it here. They also have a list of suppliers and you can access the link here.

I hope this information helps. Please do get back in touch with us if you have more questions. You can also call us on 0808 808 00 00 or contact us by webchat or email.

Best wishes,

Denise

Macmillan Cancer Information Nurse

Ref: DK/AHR

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Mastectomy nerve pain