Hi,
I was diagnosed with intercranial germ cell tumours 34 years ago at the age of 17. I never had surgery, chemo and radio therapy only. My pineal tumour destroyed my pituitary gland and have lived with the effects ever since.
I know that my diagnosis was a rare one because I have only ever met one other person who had the same issues. There are pituitary charities out there but their membership tends to be people who have had pituitary tumours and only suffer one or two pituitary deficiencies. I have taken full hormone replacement since 1991. One of the long term effects of this has been type 2 diabetes. In 2024 I had a stroke and had parathyroid glands removed.
Because of extensive radiotherapy to my head a spine I am now enduring the late effects of treatment, a relatively new phenomenon that has come to the fore because people like me are living beyond what was expected.
I have had fatigue for the entire duration but it has got worse since my stroke. I now find both physical and mental exertion debilitating. This, I am told is because of the battering my central nervous system took all those years ago. Stroke is also a greater risk due to the treatment.
I am not writing this as a a moan or whinge, just to see if there is anyone out there with similar diagnoses and or late effects (things we weren’t told about because they weren’t known about).
Thank you.
