Malignant Brachial Plexopathy

Hi everyone,

I’m new to the forum so still trying to find my way round! 

I was diagnosed with breast cancer in 2004. I had a left breast mastectomy, chemo and radiotherapy. All went well and I made a good recovery. Then in 2019 I started getting pains in my left shoulder, then scapula winging. It took over a year to finally be diagnosed with metastatic breast cancer, with a malignant tumour in my brachial plexus. I am in the care of the Churchill hospital in Oxford and have had MRI, CT and PET scans. I’m taking Letrozole and Palbociclib, both of which I am tolerating well. I also take 2.5ml oral Morphine solution to help me get a pain free night’s sleep.

Surgery is out of the question as the tumour is tangled up in the nerves, and I had my full quota of radiotherapy first time around.

The pain, tingling, numbness and sudden sharp stabbing pains are difficult to deal with, as is the Lymphoedema I was also diagnosed with. The swelling and pain make it difficult to do everyday tasks. The movement and strength in my left arm has deteriorated quite severely in the last month. My arm hangs uselessly by my side. If I use my right hand to lift my left arm I can use it, but I can’t carry anything as it just flops down again!! And my fingers are so numb it’s difficult to feel and hold things. 

I was shown some physio exercises but they have become more difficult to do, due to the loss of strength and movement.

It’s frustrating not being able to do the things I used to love…cycling, canoeing, swimming, walking longish distances. I have bought an arm sling to help alleviate some of the aching in my arm and shoulder if I do venture out for a walk, but I’ve usually had enough after about 20 minutes.

Anyway, I was wondering how many others are having similar problems and how do you cope? Are there treatments available or support braces or anything similar to help?

Thank you


HI Angie

I can’t really help as regards your situation. Hopefully you will get someone who can help soon. Just to say I am thinking of you. I was on Letrozole and Palbociclib, for about 18 months and they shrunk my tumour really well, so hopefully this will help.



Hello, Angie

Your story is a lot like mine! I was first diagnosed in 2003 and told I had mets at brachial plexus two days ago. Similar long road to diagnosis. Hopefully next week I’ll get some information about a treatment plan. The GP gave me the oramorph and I had the best sleep for a year :upside_down_face:
Back in 2003/4 this forum was really helpful, hoping it will be this time round too. 
Best wishes, Chalee

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Hope you’re still out there?
I’ve just started investigation for pain and numbness and tingling down my cancer side arm with lots of scapula pain.
Original diagnosis was 7cm tumour with extensive node inclusion. All the usual tx and double mx.
Pain has been horrific and I have reduced sensation in my fingers
Scans have been requested but just wanted to know what scan diagnosed you?
I do hope you are doing ok x