Lynch Syndrome Information

Hello CGed19 you may find reading this information https://www.macmillan.org.uk/cancer-information-and-support/worried-about-cancer/causes-and-risk-factors/lynch-syndrome-ls helpful in learning about lynch syndrome.

I am really glad to hear your recovering very well and I hope in general you feel well in yourself also.

sending you a gentle bear hug , and I hope you find the information helpful and then you can make the decisions you would like to make when you understand something better.

Hi I was tested for this but was negative but after speaking to my genetic counciler they informed before I was tested that If positive u get lots of extra testing for certain cancer.so my advice would be to speke in detail with them get lots of information xxxx

Hi @CGed19. Welcome to the site from me. You will get lots of support and information from the ladies on here. I am undergoing testing for Lynch syndrome at the moment although from what I understand there is a lot of waiting and hanging around before you get any answers. I was referred to the genetic clinic by the hospital as during routine blood tests markers were picked up that a specific protein/ gene was missing and having run the tests twice they are unable to establish whether this is due to my cancer causing the cells to be replicated abnormally or whether it is a genetic defect. I have had the information and family history conversation and the genetic blood tests they need about three weeks ago so now the long wait begins! Like you I was undecided whether to tell my sister and family about the testing until I had some more positive indication that I was affected definitely because so much has happened within our family recently and it just seemed one more millstone around our necks but after much deliberation I decided to tell them under the proviso that they were not to worry unduly about it as it was going to be a very long time before anything was discovered. To my surprise they accepted the situation quite calmly and I felt much better having told them. Obviously if I am positive my son and daughter along with my sister will be invited to be tested but if my children test negative I have been assured that it doesn't skip a generation so my grandchildren will be safe so that is a great relief. I have also been made aware of the preventative measures and tests that will be given to the family should I be positive . As gbear has said there is very good information on the MacMillan site but the genetics clinic will also refer you to some very good information websites as well. In the meantime I hope you come to a decision as to whether to tell your family..it's not easy but to be forewarned is to be forewarned as they say. My thoughts and prayers are with you in your journey. God bless. Lamb.xx

I can’t thank you enough for your reply, my situation sounds very much like yours and it’s so reassuring to hear from someone in a similar situation. Now that I have had time to think about it and on reading your reply I am feeling much more positive about it. If I am positive then tests and follow ups cannot be a bad thing as it would have always been there anyway. Thank you so much all you ladies have been such a comfort to me. X

Thanks Natalie, I remember you mentioning about being tested, the worse thing about finding out is not for myself but I have 2 daughters, 3 granddaughters and a sister that I am now worried about, but at least I will know one way or the other x

Thanks for the reply, I will look into the information you attached.  The reply I received from Little Lamb has also put my mind at ease for now, as I said to her all you ladies are a great comfort with your knowledge and understanding X

Yes that was my thought too as I have two children and yes u will know then and if positive they will give u lots of tests to catch anything early witch can only be a plus xxx

• Hi Littlelamb, I am having a total melt down today am so frightened that every ache or pain is cancer related, my anxiety levels are through the roof, do you feel like this, have contacted my GP so hopefully get something to calm me down, got a meeting with a genetics councillor on 25th June just feels like everything is taking such a long time, sorry to burden you with this but you were so kind in your last reply. Caroline.

Hi sorry this reply wasn’t meant for me but I am in the same position as you every pain is cancer to me just a normal headache or sore throat even a bit of wind all is cancer to me and it’s awful. I am currently on antidepressants and having therapy hopefully this helps me and will help you to. My cns told me it’s learning to trust your body again witch is soo hard xxx

Have u had histology results yet xx