My username is Positive41. I am desperately hoping a nurse on this site, or anyone else whatsoever, can help me locate anyone who is diagnosed with spread from Lobular Right breast cancer, with l4 lymph node spread, in 2014, to a further spread now to my right Brachial plexus. This may have developed over a long delay of over 8 months by my GP’s refusal to refer me to have an MRI in October 2020, until I sought out my own MRI in May 2021 when a biopsy determined I had cancer in the brachial plexus (nerves in the top vertebrae of the spine) that determine all movements of the upper body. I was fortunate as had chemotherapy, and immunotherapy (phesgo) which continues until today 2024. My symptoms of extreme sever pain, loss of use of my right arm, excessive lymphodema, all responded well to my chemotherapy. I feel blessed to he here. But, is there anyone anywhere who has also had cancer diagnosed in the brachial plexus please. I feel very isolated and alone with my diagnosis.
Hello positive41
It sounds like a very difficult time for you and it’s understandable that you would like to hear from others in a similar situation.
As you are probably aware, breast cancer spread to the brachial plexus is quite rare, which makes it more difficult to find others with a similar diagnosis. You describe feeling very isolated and alone with your diagnosis, but it may help to know that we often hear from people living with secondary breast cancer who feel as you do, regardless of where their cancer has spread to.
At times like this, some people find it helpful to talk with others who are going through a similar emotions. We have a secondary breast cancer online discussion forum including a private chat group for sharing information and support. There is also a weekly Live chat session which runs on Tuesdays at 8.30-9.30pm.
We also provide a number of different services for people living with secondary breast cancer aimed at providing both information and support online and face-to-face. These include Our Living with Secondary Breast Cancer Online groups facilitated by trained counsellors and speakers live sessions. Our face to face Living with Secondary Breast Cancer groups meet up monthly and also give you the chance to connect with and share experiences with other people who understand what you’re going through.
Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to more support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK - prefix 18001).
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Best wishes
Eve
Breast Care Nurse
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