Introduction

[Wales1988]

Hi my name is Scott. I'm 31 years old and I have Pan-hypopituitarism from a tumour that was removed when I was 9 years old. The tumour grew back two years later so I had radiotherapy. The tumour never grew back after this but I have to take replacement medication for 5 hormones for the rest of my life.

[SuccessCharity Partner]

Hi Scott - great to have you with us and thanks for sharing your brain tumour story with us.

[Wales1988 in reply to SuccessCharity]

Your welcome 🙂

[Scarlett0H in reply to Wales1988]

Scott, so radiotherapy cured you … and I suspect the vital hormone replacement problem PANHYPOPITUITARISM (which not many know about and sometimes get forgotten), was present well before that and is now the most important part of your medical care

Do you feel you have any real side effects from the radiotherapy ?

How well do you think the medical fraternity manage the lifelong and life-threatening hormone replacements you need?

Do you feel safe and have you enough information and support as you grow to adulthood?

Would you like to meet others like yourself on this forum and /or talk at a successcharity young people's conference?

[Wales1988 in reply to Scarlett0H]

Hi Scarlett0H,

Thanks for your message.

I need the hormone replacement to keep me alive especially the desmopressin and hydrocortisone.

I've never met another person who has pan-hypopituitarism to date.

The radiotherapy dealt with the tumour but as for side affects from radiotherapy it's difficult to say.

I have severe mental health problems really started on the severe spectrum aged 18. I'm now 31.

In all honesty the level of care dropped of when I hit 21 years old.

I'm in between hospitals now because I moved from London to Wales.

Over 10 years ago blood tests were done every 6 months to check my hormone levels. Then it went to 9 months and the last few years its been once a year.

I'm not sure what you mean by do I feel safe.

Meeting others is a positive thing.

[Scarlett0H in reply to Wales1988]

Scott if you were in London you might have been treated at UCLH? There are many young people with panhypopituitarism and diabetes insipidus I look after whove survived brain tumours near the pituitary gland - we just had a conference focussing on just that - please go onto the successcharity.co.uk website and look at the conference, book for the workshops and become a mentor. Do give us your contact details so we can reach out to help !

[Wales1988 in reply to Scarlett0H]

Hi Scarlett0H,Thanks for your response. I was under Gosh for 8 years and then Uclh for many years up to the age of 30. I moved to Wales so am no longer under a London hospital.

My email is [e-mail]

If there's anyway I can help then I'll gladly do so. For example my experiences living with pan-hypopituitarism for 20 plus years etc.

I did attend the recent virtual conference and I also booked my place for a workshop. As for mentoring I haven't come across how to apply for something like this. Maybe you can assist me?