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Great site and very helpful.  Keep up the good work and the Meeting Space is great as well. David from Essex 

I would just like to say thank you for your site. My Dad was diagnosed with Cancer of Unknown Primary in April of 2009. Sadly, he just lost his battle in February. Throughout his treatment, I had hoped the Dr's would find the origin and be better able to tackle the problem. They were not able to - but your site was informative on CUP and comforting throughout his 10 month cancer journey. Thank you for putting this together in Jo's honor and helping others tackle Cancer of Unknown Primary. Kim from New York

My mom was diagnosed with CUP in early 2006 - she passed away exactly a year later.  This form of cancer is like a moving target.  I had no idea then that such form of cancer existed.  It is one of the worst forms of cancer as no specific treatment could be used as they have no idea where it originated. Trying to find the origin wastes time and the patient does not have much of this.  Her doctors later confided to me that they think it originated from either her ovaries or her pancreas.   My mom never had a chance.   She did not even know what hit her.  Bottom line is - if there is a part of your body that you are not comfortable with - explore it.  My mom always complained about abdominal pains but her local doctor told her it was just her ulcers. Be vigilant...do not just accept what your doctor tells you...explore additional tests that could give you peace of mind and a better chance of beating this dreadful disease. Agnes from Australia.

It is my belief that studying this form of cancer -- difficult as that may be given its superficial diversity -- has the potential to reveal heretofore unknown truths about cancer in general.   My husband passed away a little over a year ago, at age 55, having been diagnosed two years earlier with squamous cell CUP.  He felt great at the time of his diagnosis; it was rapidly growing lumps in his neck that sent him to the doctor. Once the nature and extent of the disease was known, the prognosis was so horrific no matter which major cancer center we consulted that he chose to eschew most conventional, debilitating forms of treatment and instead vigorously pursued complementary options.  He lived two years post diagnosis, and with a remarkably good quality of life.  Though not the victory he wanted, both his survival time and the nature of that time astonished his doctors, and somehow that comforts me.  During those two years I networked with other family members supporting a loved one who had cancer, but I suspect it would have been gratifying to have had this connection. Kathryn from California.

I was diagnosed with adeno carcinoma of unknown primary site in June of 2008. Although the initial diagnosis was grim with nine tumors causing terrible damage I am still here and feeling much better. I have had to have my spine reconstructed, since three of the tumors were destroying it fairly quickly, but I can get around and am walking normally and getting stronger all the time. Although the doctors are perplexed as to what kind of cancer I have (initially they believed it to be pancreatic but now feel fairly certain that it is not) here I am after eleven cycles of chemotherapy back to work and ready to get on with life. Anyway, soon after my diagnosis my daughter contacted you and you were kind and gave her hope. Thank you for that. I have registered for the Meeting Space and will visit regularly. Alla from New York

As a scientist working hard to improve the diagnosis of this disease, I am aware of the terrible frustration many patients and their families must experience when being confronted with it. I sincerely hope this website and this foundation can contribute to increase the awareness of funding bodies, policy makers and clinicians that this is a terrible disease killing over 600 people world-wide every day for which a huge improvement can be made in its diagnosis, patient stratification and response to therapy if it could just get any higher on every stakeholders priority list. Torik Ayoubi (Ph.D.) from Maastricht, The Netherlands

My Beautiful mum aged 54 years old, sadly passed away over xmas, after being diagnosed with cancer of the unknown 8 weeks prior...After several Ultrasounds and Ct Scans they still never found out where it was coming from...I dont understand how they couldnt give her stronger chemo, radiotherapy or maybe a clinical trial, i feel they just let her go... She was sent home to spend her last days with us, and doctors said she wouldnt make it until xmas, but mum lasted 11 days and made xmas day and boxing day... Surely more tests should be created for this type of cancer. Its an awful thing to watch the closest person in your life fade away and you cant do anything to help. Lisa from Liverpool

 

 

 

 

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