Genetic results – more confused that ever!

I’ve just got back from my appointment where I received the results of the genetic testing that was done as a result of having bowel polyps and bower cancer at 36. They tested all of the genes that are known to have links with polyps and Bowel cancer.  I was as shocked as the geneticist when she revealed that they hadn’t found any gene changes that would explain why I had polyps or cancer from the genes that were mapped.  I felt a sense of disbelief as I was convinced they would find something that might give me an answer as to why I’ve had Bowel cancer so young.  On the one hand I should feel pleased that at the moment there isn’t any immediate concern for my family but I feel cheated, of course when you have cancer you want to know why and I’m still left hanging and it’s made me feel quite emotional as now I’m faced with uncertainty.

The key phrase is ‘the genes that we know of’ genetics is very complicated and advances are being made all the time in research.  They still strongly believe that it’s likey a gene change has caused the polyps and the cancer but it might be a gene that they just don’t know about yet. Maybe in 5-10 years they will know but that doesn’t help me or my kids right now in trying to understand why all this happened to me.  The fact is I had hundreds of polyps in my colon and that isn’t normal and the geneticist agrees.

I feel like it’s somehow my fault, have I done something wrong in my life to end up in this situation? Even if the result had been bad news it would have at least provided me with an action plan and options.  Now I am left in limbo and completely  paranoid about the future.

I laughed out loud when they said that because no gene change was found the children would be screened from the age of 50 as the guidelines suggest.  Fuck the guidelines, I’m sorry but their mother has had Bowel cancer at 36 and you still strongly suspect a gene change somewhere and you think it’s acceptable to make them wait until they are 50.  No way, I will fight for my kids to be screened at an earlier age below 30 if I can help it.  They’ve agreed to speak to the Bowel cancer screening team about the situation.

There has to be a reason why myself and so many others are getting Bowel cancer at a younger age when there isn’t a family history of that cancer or associated conditions such as chrone’s or colitis. This is why raising funds for cancer research is so vital so we can begin to understand more about cancer and it’s causes and how it can be prevented.  I can’t change the fact I’ve had cancer and I don’t know why I’ve had it, I hope that one day I will know as medical advancements are made and that’s why fundraising for these research projects are so vital.

 

 

 

 

 

2 thoughts on “Genetic results – more confused that ever!

  1. Myself and a brother and sister all had bowel cancer. Genetics were done and they concluded it wasn’t hereditary. I was in my forties when diagnosed. This is classed as an old persons disease!. When I refuted these claims one of the doctors agreed. His words were “we don’t know enough about genetics”….I totally agree. The one good thing to come out of this is,that the rest of my family including my son’s don’t have to wait ’til the age of sixty to have a colonoscopy. Good luck to all who have and have survived this horrible disease…..Bernadette.

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  2. Feeling you, I was diagnosed with stage 3 colorectal at 48,3 years ago, not so young but the scare we feel for our family is torture, my son is 31 and needs to be tested but wont go, We can drive ourselves nuts wondering how and why, every little ache or pain is a potential dark cloud starting to hover. I went completely organic as I am fairly sure its the food but thats me, processed food in plastics, wi-fi radiation all around us, kids carrying phones they dont even need from a young age, wi-fi in schools, which is being banned in many counties in europe I feel sure plays a role. the aerosol geo engineering that goes unnoticed daily is raining down chemicals on us globally. Cancer research is a must but addressing these issues are too. I also find it mind boggling the profit from the chemo drugs is in the billions annually, yet they ask us to wear a pink ribbon and go for a run. There is more to it than most can imagine, a tangled web indeed.
    Wishing you all the best, sincerely,
    Duncan.

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