Hi
My father recent passed away after being diagnosed with stage 4 non Hodgkin’s lymphoma 3 weeks earlier. He was 66, both his parents passed away at 58 from the same illness. Several other males on my fathers side have also died from the illness.
After his passing the consultant recommended I be tested due to the high risk family history. I have just been informed I have been rejected for the tests, I’m hoping someone maybe able to provide some advice or options, I’m 39 with no symptoms.
I’m not being monitored in anyway but given the history I’m advised if I feel unwell to seek advice. Early detection is key, most males in my family developed the illness in 50’s so were unable to have lots of the treatment options as the body wouldn’t cope with the demands placed on it.
Hi Phoenix, you must be in complete shock at your father passing away so quickly after diagnosis and if it were me the fears, thoughts and feelings would be whizzing around in my head. I cannot comment on testing problem. I was diagnosed with chronic lymphocytic leukaemia at 53 yrs old and there is no family history of it as far as I know. Please keep us posted on what is going on for you and take care of yourself.
I can now see clearly your dilemma, all I can say is that I was completely ignorant when I got my blood cancer to the symptoms I should have recognised. I hope with your knowledge that forewarned is forearmed to some degree. I wish you all the best for the future and hope at some future date you will be eligible to take part in a monitoring project.
Could I suggest that you contact your father’s consultant (or at least his CNS) and ask him to write to your GP detailing his recommendations for testing so that you may be referred?
I am so sorry to hear about the loss of your father from stage 4 non-Hodgkin lymphoma and I cannot imagine how difficult it has been for you. I’m also sorry to hear that you have been rejected for genetic testing, which is surprising given you had a recommendation from your consultant. Were you provided with any explanation about the reasons behind the decision? If not, I would encourage you to go back to the decision maker to get a better understanding of the decision making process here. You may well have already read it, but there is a useful article from Cancer Research UK on genetic testing, which includes a little information on private testing which may be an option for you but I would recommend talking this over with your GP and/or your consultant first. I hope this is useful for you, and do keep us updated if you feel comfortable to. In the meantime however, please don’t hesitate to contact our support services team if you wanted to talk further about this, or anything else regarding the recent loss of your father.