Rare Cancer Support Forum

I lost my partner/best friend to PARAORTIC PARAGANGLIOMA.As a nurse,I was anxious to research all I could about this very rare cancer and MALIGNANT PLEURAL EFFUSION which was the condition which eventually caused him to die.Any help I can give others,will be given gladly as I found there was very little on this cancer and what I did find was mainly very medical in text-luckily not a problem for me.

Hello witchylass, I just posted an intro about pheochromocytoma then I read your post about Bri. My thoughts are with you.

My husband has phaeochromocytoma (UK spelling) and the umbrella term for phaeos arising outside the adrenal glands is "paragangliomas". If you dont find it too difficult could we compare experiences? I am desperately trying to find others with this very rare cancer who have sporadic rather than genetic disease. Do you know if Bri's condition was genetic?

We intend re-appealing to our local Primary Care Trust for funding in the new year but the criteria states that we have to show how the drug we are currently paying for would benefit Ian (my hubby) compared to others with the same disease - but we cant find anyone with the same disease! I've been searching for nearly 2 years now.

I hope you are doing ok, my sincere condolences
Jane x

Hi Jane...................if I can help you then Bri's fight with cancer wasn't in vain.I have garnered info about this cancer through various sites and papers and have been able to decipher a lot due to my being a nurse.I sent you a message,not realising that you had asked for my help-sorry about that but I just haven't been on the site until today-xmas time was painful as you can imagine.If you wish,we could exchange phone numbers etc.
Love Laurie

Hi there
My partner (see acinic cell carcinoma of the palate) has pleural effusion and he has just declined the chest drain as he doesn't want any further lengthy risky procedures.. if you have any thoughts on keeping him comfoy without complete rest (!) do let me know..
Thank you
Sarah

hi all. I had a primary bladder paraganglioma removed in april 2010. This was after months of ill health and doctors not knowing what the problem was. They found it accidentaly and i feared the worst. After mibg scans and a follow up check up i have been told it has not spread thank goodness. I have read mountains of medical info and discovered that because its so rare they dont know how it will behave. I am asking about genetic testing and will continue to have regular check ups but its so hard and terrifying to live with sometimes. Not knowing is the worst part so i understand your pain and your loss. Have you any advice to give me about what sort of questions i should be asking. Any views would be appreciated.

Hi Kimbo
I don't know about your specific cancer but always ask the same questions about treatment:
what are the local recurrence rates?
Would you operate a second time, are there any associated risks?
what are the non-surgical options?
what happens if I have treatment?
what happens if I don't have treatment?

you want to know how long therapies work for, how long side effects last. You may not be able to find someone who has the same cancer but you may find someone who has had the same treatment, speak to them.

I'm sorry you feel a sword of damacles, and I hope you have the strength of yourself and your friends to move through each day putting it further out of your mind.

Stay happy, stay positive, stay healthy blip

Hi.

Im from Ukraine.
My relative has got malignant paraganglioma.

Will be happy to share with our experience in treatment.

Write me to
stasbatryn@gmail.com