Pheochromocytoma anyone? Rare tumour

Pheochromocytoma anyone? Rare tumour

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Discussion

Gone a bit AMG

Original Poster:

6,713 posts

197 months

Sunday 19th March 2023
quotequote all
Hello PH health folk.

I was diagnosed with this tumour last week. I was having a colonoscopy to check for bowel cancer, none cancerous polyp removed (result) and the surgeon had a hunch. It’s forms on the adrenal gland and causes physical and mental health issues that have plagued me all life. 90% of the tumours are benign so the prognosis from here is good. I’ll be getting it removed quickly.

I just wondered if anyone on here has been through this? It’s caused chaos in my life, from psychotic episodes to violent temper loss that has resulted many arrests and lost friends. How I’ve not been jailed is a miracle in hindsight and the diagnosis is life changing. The crippling anxiety I’ve had as a result has meant that everyday for the last 20 years I’ve been sick in the shower as I’m going to work.

I’m hoping to find a suitable therapist to support me once the surgery is done as the changes in me mentally I will need help with. Which I am researching.

Just wondered if anyone else has had experience of what is an incredibly rare tumour. In an accident when I was fifteen I cut off my right hand. It was successfully reattached and still have good functionality, I played rugby again within 2 years it but my mental problems and sudden temper loss started after that event and I do wonder if it’s related.

Thanks for reading. I didn’t want to post on the cancer thread for what is hopefully benign.

seyre1972

2,628 posts

143 months

Sunday 19th March 2023
quotequote all
Gone a bit AMG - can't comment on the symptoms/prognosis etc - but just a best of luck message.

Mrs E currently works in Endoscopy (ITU/Senior Sister background) And while not up there with "we found nothing" Sounds like you're on the right road to recovery/treatment etc. !!

Gone a bit AMG

Original Poster:

6,713 posts

197 months

Sunday 19th March 2023
quotequote all
seyre1972 said:
Gone a bit AMG - can't comment on the symptoms/prognosis etc - but just a best of luck message.

Mrs E currently works in Endoscopy (ITU/Senior Sister background) And while not up there with "we found nothing" Sounds like you're on the right road to recovery/treatment etc. !!
Cheers they’ll be many breakfast to come hopefully

Bill

52,758 posts

255 months

Sunday 19th March 2023
quotequote all
My brother had one. The pre-op preparation is pretty st. They dose you up on alpha and beta blockers until you feel st, and when that subsides and you manage to compensate they up the dose.

AIUI they need to flatten your adrenal function so it doesn't kick off when you're under the anaesthetic. The plus side is that when they stop the drugs a few days before the operation you start to feel better almost instantly. My brother was living in a boat at the time but couldn't make a cup of tea without feeling faint so he came to live with us for a few months.

That said the surgery was a complete success and he's currently sailing around Indonesia having the time if his life. The git! biggrin

ETA his was also an "incidentaloma" found when he had a CT for a persistent cough. His lungs were fine but there was a hint of something nearly out of shot.

Gone a bit AMG

Original Poster:

6,713 posts

197 months

Sunday 19th March 2023
quotequote all
Bill said:
My brother had one. The pre-op preparation is pretty st. They dose you up on alpha and beta blockers until you feel st, and when that subsides and you manage to compensate they up the dose.

AIUI they need to flatten your adrenal function so it doesn't kick off when you're under the anaesthetic. The plus side is that when they stop the drugs a few days before the operation you start to feel better almost instantly. My brother was living in a boat at the time but couldn't make a cup of tea without feeling faint so he came to live with us for a few months.

That said the surgery was a complete success and he's currently sailing around Indonesia having the time if his life. The git! biggrin

ETA his was also an "incidentaloma" found when he had a CT for a persistent cough. His lungs were fine but there was a hint of something nearly out of shot.
Thank you for taking time to reply. I’m hoping for a similar result. Did your brother have any problems mentally previously?

Bill

52,758 posts

255 months

Sunday 19th March 2023
quotequote all
Gone a bit AMG said:
Thank you for taking time to reply. I’m hoping for a similar result. Did your brother have any problems mentally previously?
No problem. He didn't have much in the way of symptoms, just some odd palpitations, night sweats and insomnia. As far as I know nothing mental that can be attributed to the pheo.

Gone a bit AMG

Original Poster:

6,713 posts

197 months

Sunday 19th March 2023
quotequote all
Bill said:
Gone a bit AMG said:
Thank you for taking time to reply. I’m hoping for a similar result. Did your brother have any problems mentally previously?
No problem. He didn't have much in the way of symptoms, just some odd palpitations, night sweats and insomnia. As far as I know nothing mental that can be attributed to the pheo.
Thanks I’ve ticked those three boxes completely but I kept my mental issues from my family until this week. The Pheo! That’s what the surgeon said to me post surgery last week. I think you’re a pheo! I’ve only seen it 3 times! Not a nurse in the room knew what it was including my amazing sister who is one of the countries leading children’s nurses.

It was my sweating during the colonoscopy that triggered the surgeons thoughts. He asked my sister if I’d ever had any mental problems and sweated excessively! Her reply was he’s fking bonkers and sweats if he sees a candle. Lit or not.

Again thanks for your time. Great place this.

Bill

52,758 posts

255 months

Sunday 19th March 2023
quotequote all
heheYeah, my wife's a GP and there was a bit of head scratching that went on. (FWIW his op was keyhole so the scars are minimal.)

The Hypno-Toad

12,282 posts

205 months

Sunday 19th March 2023
quotequote all
"Blood makes noise, it's ringing in my ear"

This place really is astounding sometimes.

At some point I was going to post about this but I kept delaying, not sure why.

At the end of 2021 I went to see my doctor about something (I can't even remember what now) and he took my blood pressure. (some of this has already appeared on that thread by the way.)

"That's weird, not seen that before with you. Could you do me a favour, take one of blood pressure machines and do some monitoring at some point?"
"Not problem, I'll get my own machine though"

Completely forgot about it to be honest until about a month later. Got a machine and started monitoring. "Well, that can't be right". Checked again. "Must be a dodgy machine," Checked again. "Bloody Amazon, Chinese knock offs" Bought another machine, Braun this time so I trusted it more. Same results. Oh. Better ring the doctor then because that's not good. Believe it or not this was the day I was actually getting my will signed off as well. Ring the doctor, explain the situation to the receptionist and ask to see the doctor right away.

"Well it's very doubtful I can get you in to see the doctor for just a couple of high pressure reading what's your latest result?"

"227/137"

(pause)

"I'll get the doctor to call you back within 10 minutes. If you get any pains in your chest, ring 999 straight away,"

10 minutes later.

"Right Hypno (I am on first name with my doctor now.), I have sent an emergency prescription for blood pressure medication round to your chemist (literally at the end of my road.), walk round there and pick it up. Take the tablets and basically don't move for the rest of the day. If you feel even the slightest chest pain, dial 999, do not past go, do not collect £200. If necessary, get them to call me from the ambulance. Call me tomorrow morning at 10-00 and let me know if its dropped,"

After quite a stressful day, it had dropped but not by much. He was relieved but said to call him again in two days time with the usual warnings. Luckily it had continued to drop slowly but steadily and I was a little bit out of the danger zone.

"So Hypno, what's going on? What's changed? You're not unfit, you're not over weight, you've not got high cholesterol, you've not got diabetes, I know you've had some stress issues but they seem to have become under control, what's changed?

"Nothing"

"Are you sure? No.... err recreational drugs,"

"No way,"

"Can you think of anything, anything at all?"

I'd like to help you doctor, yes I really, really would,

"Well...... I do have a bit of temper..."

(pause)

"Go on,"

"Well there was this one time recently, when someone had illegally parked on my drive and he was sitting in the car, that I was standing at the top of my stairs with a hammer in my hand, wondering which one of his lights I should take out first."

"Bloody hell, I think I know what this,"

So after lots of tests over a few months and discovering that I was running at twice the level of adrenaline in my blood stream than I should be that I was diagnosed with a pheochromocytoma, so I am also a member of this very exclusive club. All the specialists were extremely impressed that my GP had spotted this and I needed to hang onto him. They have put me onto bp medication and an alpha blocker and they seem to have worked perfectly well as my blood pressure is now very steady and although they mentioned it when I was first diagnosed, it seems to have gone very quiet on the surgery front and that's fine by me. And the temper?

"Well we'll have to try again once the silence has returned,"

Well, as I sit here in my flat at 22-13 on a Sunday night, at 58, with no partner and no sign of one in sight, I wonder how much this stupid little lump on a gland has ruined my life? The jobs it's lost me, the friends it's made me lose, the women I have driven away. I have never hit anyone but certainly I have come very close on a couple of occasions and I have been very violent and spiteful with my language to virtually everyone I have been close to. The blood would start to pump, the adrenaline would ring in my ears, things would get smashed, I'd be driving home screaming to myself in the car so hard that the spittle would splatter against the windscreen about something trivial that had happened at work, almost believing that this was normal. And this easily goes back to when I was a teenager. I have some great friends who have stood by me through this and an understanding boss and family but sometimes it just seems like it has all been a bit of a waste. And all over a stupid little lump.

Anyway enough of my navel gazing, I really hope everything goes well for you Gone a bit AMG. At the moment, everything is under control for me so I am not pressing for surgery but if the drugs do stop working I will be first in line as I won't go back to living like that. Feel free to pm me if you want to have a chat about anything. smile

And if anyone reading this has the slightest suspicion that this might be you, get it checked. You might not be just an angry old man.

And finally, yes, this is exactly what it feels like.

https://www.youtube.com/watch?v=BCbguNobCtk&ab...




Edited by The Hypno-Toad on Sunday 19th March 22:49

Gone a bit AMG

Original Poster:

6,713 posts

197 months

Sunday 19th March 2023
quotequote all
The Hypno-Toad said:
"Blood makes noise, it's ringing in my ear"

This place really is astounding sometimes.

At some point I was going to post about this but I kept delaying, not sure why.

At the end of 2021 I went to see my doctor about something (I can't even remember what now) and he took my blood pressure. (some of this has already appeared on that thread by the way.)

"That's weird, not seen that before with you. Could you do me a favour, take one of blood pressure machines and do some monitoring at some point?"
"Not problem, I'll get my own machine though"

Completely forgot about it to be honest until about a month later. Got a machine and started monitoring. "Well, that can't be right". Checked again. "Must be a dodgy machine," Checked again. "Bloody Amazon, Chinese knock offs" Bought another machine, Braun this time so I trusted it more. Same results. Oh. Better ring the doctor then because that's not good. Believe it or not this was the day I was actually getting my will signed off as well. Ring the doctor, explain the situation to the receptionist and ask to see the doctor right away.

"Well it's very doubtful I can get you in to see the doctor for just a couple of high pressure reading what's your latest result?"

"227/137"

(pause)

"I'll get the doctor to call you back within 10 minutes. If you get any pains in your chest, ring 999 straight away,"

10 minutes later.

"Right Hypno (I am on first name with my doctor now.), I have sent an emergency prescription for blood pressure medication round to your chemist (literally at the end of my road.), walk round there and pick it up. Take the tablets and basically don't move for the rest of the day. If you feel even the slightest chest pain, dial 999, do not past go, do not collect £200. If necessary, get them to call me from the ambulance. Call me tomorrow morning at 10-00 and let me know if its dropped,"

After quite a stressful day, it had dropped but not by much. He was relieved but said to call him again in two days time with the usual warnings. Luckily it had continued to drop slowly but steadily and I was a little bit out of the danger zone.

"So Hypno, what's going on? What's changed? You're not unfit, you're not over weight, you've not got high cholesterol, you've not got diabetes, I know you've had some stress issues but they seem to have become under control, what's changed?

"Nothing"

"Are you sure? No.... err recreational drugs,"

"No way,"

"Can you think of anything, anything at all?"

I'd like to help you doctor, yes I really, really would,

"Well...... I do have a bit of temper..."

(pause)

"Go on,"

"Well there was this one time recently, when someone had illegally parked on my drive and he was sitting in the car, that I was standing at the top of my stairs with a hammer in my hand, wondering which one of his lights I should take out first."

"Bloody hell, I think I know what this,"

So after lots of tests over a few months and discovering that I was running at twice the level of adrenaline in my blood stream than I should be that I was diagnosed with a pheochromocytoma, so I am also a member of this very exclusive club. All the specialists were extremely impressed that my GP had spotted this and I needed to hang onto him. They have put me onto bp medication and an alpha blocker and they seem to have worked perfectly well as my blood pressure is now very steady and although they mentioned it when I was first diagnosed, it seems to have gone very quiet on the surgery front and that's fine by me. And the temper?

"Well we'll have to try again once the silence has returned,"

Well, as I sit here in my flat at 22-13 on a Sunday night, at 58, with no partner and no sign of one in sight, I wonder how much this stupid little lump on a gland has ruined my life? The jobs it's lost me, the friends it's made me lose, the women I have driven away. I have never hit anyone but certainly I have come very close on a couple of occasions and I have been very violent and spiteful with my language to virtually everyone I have been close to. The blood would start to pump, the adrenaline would ring in my ears, things would get smashed, I'd be driving home screaming to myself in the car so hard that the spittle would splatter against the windscreen about something trivial that had happened at work, almost believing that this was normal. And this easily goes back to when I was a teenager. I have some great friends who have stood by me through this and an understanding boss and family but sometimes it just seems like it has all been a bit of a waste. And all over a stupid little lump.

Anyway enough of my navel gazing, I really hope everything goes well for you Gone a bit AMG. At the moment, everything is under control for me so I am not pressing for surgery but if the drugs do stop working I will be first in line as I won't go back to living like that. Feel free to pm me if you want to have a chat about anything. smile

And if anyone reading this has the slightest suspicion that this might be you, get it checked. You might not be just an angry old man.

And finally, yes, this is exactly what it feels like.

https://www.youtube.com/watch?v=BCbguNobCtk&ab...




Edited by The Hypno-Toad on Sunday 19th March 22:49
fking hell. Well we’re going to become close! As I immediately over share as I can’t stop myself, as you might know I can’t. I’ll be in touch when I’ve stopped crying and slept well again as I have been since I found out last week.

Gone a bit AMG

Original Poster:

6,713 posts

197 months

Sunday 19th March 2023
quotequote all
I’m laughing.now. I’ve reread your amazing post. And played that you tube. My blood said your worthless but I now know why thank fk.


The Hypno-Toad

12,282 posts

205 months

Sunday 19th March 2023
quotequote all
Gone a bit AMG said:
fking hell. Well we’re going to become close! As I immediately over share as I can’t stop myself, as you might know I can’t. I’ll be in touch when I’ve stopped crying and slept well again as I have been since I found out last week.
No problem, no rush, pm when you can.

Gone a bit AMG

Original Poster:

6,713 posts

197 months

Sunday 19th March 2023
quotequote all
I’m 50 this year.I’ll be intouch offline.

And my word thanks. Again. I’ve seen you post elsewhere!

One last question if you’re still up? Have you ever suffered a significant mental or physical trauma? Just a yes or no. Is fine.

The Hypno-Toad

12,282 posts

205 months

Monday 20th March 2023
quotequote all
Not sure. No one has linked anything.

Gone a bit AMG

Original Poster:

6,713 posts

197 months

Monday 20th March 2023
quotequote all
Having started this and now contacted Hypno directly as his reply was amazing and very brave I’ll bump this just incase anyone is afraid to share or has done something stupid and doesn’t know why. Plus I love attention. Then don’t. It’s a symptom of a pheochromocytoma. Go on look it up.

Our mental health is now no longer a taboo. It’s not so tell some one if you don’t feel “right in the head” or constantly angry or worthless because you’re definitely not the latter and can fix the two former.

BrabusMog

20,149 posts

186 months

Wednesday 22nd March 2023
quotequote all
Just found this from the Predictathon thread, wishing you all the best and keep the breakfasts coming!


The jiffle king

6,914 posts

258 months

Wednesday 22nd March 2023
quotequote all
I only know you from PH and mainly the Predictathon thread and what I've read in this thread I wanted to wish you all the best
I can't imagine what you are going through and have gone through over the years

Hope that things work out well for you and hope to see you back in "the Thon" soon

Gone a bit AMG

Original Poster:

6,713 posts

197 months

Wednesday 22nd March 2023
quotequote all
The jiffle king said:
I only know you from PH and mainly the Predictathon thread and what I've read in this thread I wanted to wish you all the best
I can't imagine what you are going through and have gone through over the years

Hope that things work out well for you and hope to see you back in "the Thon" soon
It’s life changing thanks mate.

mattyn1

5,757 posts

155 months

Wednesday 22nd March 2023
quotequote all
Threads like the ‘Thon and all the good work Gadge does in it bring us together with that common interest ……. And ultimately a unique friendship.
I sincerely wish you all the very best …… always remember we are here if and when you need us. This place is great therapy as I have found out in the past, somewhere to rant, cry, cheer and take the mick!

Again, I hope everything goes ok and you get well soon. I am sure we will all be thinking of you!

Mezzanine

9,214 posts

219 months

Wednesday 22nd March 2023
quotequote all
Amazing to see another sufferer pop up so quickly after the OP’s post, PH can still be a great place.

Good luck going forward, you’ve taught me something new today thumbup