Hey everyone,
I just wanted to share my own story in the hope it may help others with questions. I've also shared my story on Macmillan which can be accessed here
https://www.macmillan.org.uk/cancer-information-and-support/stories-and-media/stories/jonny-story-living-with-testicular-cancer#:~:text=Jonny%20was%2025%20when%20he,the%20information%20and%20support%20available.
In November 2023 I had an ultrasound which confirmed a testicular tumour. Within a month, I had this removed (Right Radical Inguinal Orchidectomy). A second CT Scan and rising post-op bHCG blood levels indicated I had lymph node metastases in my retroperitoneum, despite a small primary tumor and no sign of lymphovascular invasion on the pathology.
I started 3 cycles of 5-day BEP in February 2024, which ended in April. I tolerated this reasonably well (no sickness, no infection, no thrombosis or anaemia etc). My bHCG level normalised. My post-chemo' CT showed these retroperitoneal lymph nodes to be cystic so I was referred to The Royal Marsden in London for Open Nerve Sparing RPLND. This was scary to think I had to have it, but I'm now 7 weeks post surgery and feeling really good. The removed lymph nodes had essentially become pre-cancerous rather than active cancer (this is called mature teratoma).
From the moment my treatment started to the moment it ended, this all took 5 months.
I'm sharing this in case it helps anybody else in our community. Happy to answer any Qs
Hi Jonny98
Thank you very much for taking the time to share your story. I'm sure it will be a great help for others following the same path as you.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
