i have paraganglioma, what does that really mean?

hi

well i cracked.

i just had to come home from work as just broke down in the middle of the office.  think i have been in denial for so long something had to give.  i went ot a funeral yesterday for one of my best friends who died in an accident, he was only 31. and we are buying a house at the moment which has been too complicated, and i got the phone call this morning for my octtreotide scan which is over 3 days which they hadn't told me before.

i think the stress has just built up and i cracked as just been sort of ignoring what has been happening and just carrying on like everything is normal. until now, i cracked, i just couldn't cope with the stupid mundane things everyone was complaining about and it all just seemed so loud.

my partner has told me i have to stay off and has decided to take me away for a few days and is going to speak to my boss for me.

i feel like i'm broken

Hi

I think the break will help. We all crack at some point the usual why me and the waiting for scans, tests ect is so stressful . Take it easy and have a nice break with your partner make sure he spoils you rotten on holiday. Take care x

Helen,  I'm so sorry you cracked, but not surprised, it's so much to take in.  When I was diagnosed the shock was terrible - to know I had cancer was bad enough, but then finding out it was actually very rare, and really complicated too, well I just couldn't take it all in.  I have to be honest and say that my hubby and I did try and drown our sorrows some nights - we felt so alone.

But, on the plus side - my sister had her tumour 14 years ago, and she hasn't had any recurrance, so hopefully, if they've got it all out, you could be fine.   That's obviously what we're hoping for our son.

Waiting for tests and having all the tests is just awful - I used to think I was going to explode sometimes, but you WILL get through them.  The Octreotide scan is so long-winded, I used to try and recite poetry in my head, or lyrics of songs, anything to take my mind off it.  And then it was done.

Go and have a break, take a deep breath and sort of re-gather yourself.   But I promise you, your strength will probably surprise you  xx Jeanie

I have malignant ganglioma, diagnosed two years now, after several years of assumed hypochondria. I was 39.

The primary was removed (on the front of the spine) with a follow up of MIBG (a year later due to NHS delay). Unfortunately MIBG had no effect even though it was taken up and the primary grew back.

Now I have several tumours in my abdoman (largest about 12cm) and many in my lungs (largest about 5cm). Pain is a big problem hardly controlled with morphine, tiredness is another problem, partialy because I keep myself awake due to nightmares, where I wake from a bad dream to remember the real nightmare. the real problem is breathing and I am terrified of suffocating. i have been very fit my whole life but now can do nothing.

I got married last year but then told my wife I hated her and wished she would leave. She did so and I am now without her. I do not know why I made her leave, I do not know what is wrong with me.

I have never really even met anyone with cancer before (never felt the need) but I was looking at these posts when I saw the word 'paraganglioma' the word that haunts every minute.

I am starting chemotherapy on thursday but I have been advised it will not work, what else can I do.

I sat down on saturday afternoon and drank my oromorph supply (600ml) but ended up vomiting all over the carpet, it is sickly after the first glass full. I had a nice sleep but woke up to a lot of cleaning to do. I felt nothing when I woke up.

I cannot tell the doctors because they would probably limit my access to morphine.

A lot of people who die from cancer do not get the two years I have had. I am not complaining but life is not much fun at the moment.

I do not know why I wrote this, maybe I felt like telling someone how i feel and need to be anonymous. Maybe I should not have written it.

I'm so sorry - you have had a rough time of it.  My history is very complicated, but I have malignant pheochromocytoma, with secondaries in various places.  

Firstly, I had chemotherapy, and it did work!  I had Temozolomide for 6 months, and it shrunk the tumours in my liver.   What hospital are you under?   If you want to send me  private message I'll be happy to chat to you?  I'm under St Bart's in London, but was first under King's College.  I changed when the doctor said there wasn't anything more they could do for me.   So don't give up, please.

Jeanie x

The Churchill, Oxford. Chemotherapy starts tomorrow morning. Good luck to me and everyone else for that matter.

mmm. That obviously was not how to send a private message, I will have a look next week. Busy now. Mum is over and taking charge. She has convinced herself there will be a miracle and I would not like to be in God's shoes if he fails to deliver.

Click on 'friends' at the top right of your home page - I should be listed. Then you can send PM or reply.

Hi

Sorry for not replying earlier lappistrello.  I hope the chemo has been going well for you.  I think all the feelings you have been going through were perfectly understandable.

I have just found out I have another lump in my liver,  i had one removed from my abdomen last summer.  i am waiting for an appointment with the liver specialist at Jimmys Hospital in Leeds, to see if they can remove it, if not i will be starting a course of chemo. 

i had a breakdown last september and was off work for a month with stress, think it can sometimes hit when not expecting it.

if you want a chat at any time just send me a msg.

take care xx with love xx

Chemo is not nice and I have a bad reaction causing very bad pain. After two nightmare episodes involving ambulances and doctors being unable to stop the pain, and screaming down hospital wards until they knocked me out with something, my macmillan nurse got me into katharine house hospice where the people are brilliant and the pain is stopped in a couple of minutes.

The good news is there has been no tumour growth, no shrinkage either but none was hoped for.

I will give the private message thing a try.

But what happened about the liver? Your post is a month old, I presume either you had surgery or are already on chemotherapy. Either option is pretty horrible.