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Malignant Para-Aortic Paraganglioma

© As Told on August 25, 2009

Join witchylass1965 on our Rare Endocrine Tumor Support Forums

Hi there everyone. I lost my very best friend/partner to Malignant Para Aortic Paraganglioma, 5 weeks ago, after a year long struggle with this very very rare cancer. He eventually succumbed to Malignant Pleural Effusion due to metastatic lymphatic disease. This caused a build-up of fluid in lungs due to poor lymphatic drainage.

This was the most painful journey I have been on. I cared for Bri at home and helped him make decisions relative to his treatments and diagnostic tests.

I am a Staff Nurse in the NHS in Scotland and had a good knowledge of cancer treatments. Since Bri was diagnosed, I have increased that knowledge immensely. If I can offer any advice or assistance to anyone, I will do my utmost to help. I know how awful it is to be struggling in the dark with a diagnosis of cancer.

Bri was a lovely lovely guy and I live in hope that we will meet again some day. I miss him like crazy just now. We developed such closeness and we discussed EVERYTHING. Things about his being ill, dying, our fears-everything. I feel honoured that I was able to support this man whom I adored at this most difficult time.

May Bri Rest in Peace

With love to all on this site