Hello all,
I've just joined and wanted to introduce myself, because I suspect there are others out there walking a similar road — and I'd really like to find you.
The short version:
In 1995, aged 24, I was diagnosed with a teratoma testicular tumour, with secondary spread to the lymph nodes. BEP chemotherapy started in early 1996 and finished that July. I was followed up by the Royal Sussex Cancer Support team for five years — and then, as was standard at the time, discharged. No long-term follow-up. No conversation about what cisplatin might do to a body twenty or thirty years down the line.
For about two decades, life carried on.
Then, around 2018, things started to change. Peripheral neuropathy in my feet — burning, numbness, colour changes. Profound fatigue. A severe hypothyroid episode that took nine months to be picked up. Pain that didn't fit any of the usual boxes. And — this is the bit that's been hardest — the long, drawn-out process of trying to get clinicians to connect what's happening now with what happened in 1996.
I'm 55 now. After years of pushing, I've finally been referred to the Sussex Cancer Centre's post-cancer / late-effects team, with the cisplatin link formally on the table.
What I'm asking:
Is there anyone else here who had BEP in the 80s or 90s, was discharged after the standard five years, and is now dealing with late effects — neuropathy, endocrine issues, vascular changes, fatigue, anything? I'd particularly love to hear from people who've had that same experience of the long gap, the symptoms creeping in, and the fight to be taken seriously as a late-effects patient rather than someone presenting with a brand-new mystery.
You're not invisible to me. Hoping I'm not to you either.
Tom
Hi TommyCockles and a very warm welcome to the Macmillan Community but so sorry to hear about your journey to date.
I know from experience having been on my cancer journey for over 26 years with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable), Asbestosis and Prostate Cancer that navigating this journey can be such a stressful and challenging time but talking with and getting support from people who have walked or are walking the ‘exact same' journey can help a lot.
As you see the Community is actually divided into dedicated Support Groups (Discussion Rooms)…… and I can see that you have already joined and put up a post in our dedicated…….
…….. support group.
This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
As always the Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits and financial guidance or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community.
