scared – is this how it begins?
- This topic has 5 replies, 6 voices, and was last updated 13 years, 6 months ago by
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Hi again, Jules….I believe that once touched by this cancer, it is easy for us to immediately assume the worst. You must have told your physician about your Dad’s cancer. Therefore, I believe he is inclined to make sure to rule it out. The symptoms you are describing remind me of a kidney infection I had many years ago. Has this been ruled out?
I also wanted to mention that I will be passing through London on the 17th of June. Do you think we could repeat our meeting up? It would be love to share a hug and some memories with you.
Hugs
MarionHi Jules
I’m sorry to hear you have been so unwell, but I think you should be reassured that your doctor is being thorough – your symptoms could be caused by so many things and they need to rule some out to get to the actual cause.
Jim is right about the need to go to a centre of excellence and, even with the NHS, you have the right to ask to be referred to a named specialist of your choice …
If you think I can be of any help, please don’t hesitate to contact me via AMMF’s website.
With positive thoughts
Helen x
Jules, for what it’s worth, my onc told me some time ago, there’s no evidence of any genetic or inherited link with cc.
Where are you located and what hospital are you dealing with to get a diagnosis for yourself? People experienced with cc usually don’t have much trouble getting it right and after a CT, an ERCP is typically ordered. You don’t want this done in a small or regional hospital, since a poorly done ERCP can cause lots of problems.
Keep us posted and good luck.
Hello Jules, I do remember you! I think it is perfectly normal to be scared with what you are going through. My daughter was Teddy’s stepdaughter and she shows some lesions on her liver and cycts on her kidneys and of course she is thinking similiar to you and they are not blood related. My first thought for you, and I am not a doctor, is kidney stones. Groin pain could be overy connected. She also has groin pain and they found a cyst on her ovary. I am thinking a simple ultra sound of the kidneys and the groin may be an easy elimation of possibilities. Please let us know how you are doing.
Jules,
Sorry you are facing this health crisis – and with your experience it is to be expected that you may be fearful. Use your knowledge to your advantage, share your family history and be insistent that proper testing is performed.
Bz
Its been 3 years since I lost my Dad to this disease. I miss him every day. Recently I started experiencing some worrying symptoms: passing blood in urine, pain on urinating and pain and discomfort in lower back and groin. I had a cystoscopy of my bladder and an area of ‘inflamation’ was found, I had this resected and I was told that it wasn’t cancer.
The Dr then sent me for a ct scan of my pelvis and he has now ordered an ultrasound of my liver. Maybe I’m just panicking – I just can’t help it, the memories of what my dear Dad went through are so painful I cannot bear to think about it. My Dad had a cousin who also suffered primary liver cancer, I know that there is nothing to say that this disease is hereditary however I have come across other people who have a family history of cc. It is not clear why I need an ultrasound of my liver. I do remember my Dad having an ultrasound of his liver which failed to find the tumor that was covering 70% of it!?! He also had a biopsy of his liver which again failed to pick it up. Needless to say I have little faith in the NHS. It wasn’t until he started handing over large sums of cash to these Drs that anything was done to help him.
Sorry for the rant, and sorry to hear that this site has lost so many courageous and inspiring people.
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