Lynch Syndrome Information

1. Hi, have my genetics appointment on Friday, seems to take forever doesn’t it, I have filled in the questionnaire on my family history so hopefully get some questions answered soon. It’s a video conference. How long have you been waiting now, hopefully you will hear something soon. xx

Hi caroline. I'm still waiting...been about three months now I think. I saw my consultant yesterday on another matter and he was asking me if I had heard anything. He researched his records and they haven't notified him yet so  I believe he said he was going to make enquiries and chase it up as he needs the result too. Just have to be patient a bit longer! Anyway I hope everything goes well with your meeting on Friday. I wouldn't know where to start with a video zoom conference so guess I will stick with the good old phone until they get back to face to face appointments in that department...if they ever do! I sometimes think some consultants/doctors stick to the phone because it's quicker and easier but I'm not complaining. It's safer and saves me a journey and I get the more  serious priority bits done face to face. You take care now and keep us updated. Love Lamb.xx

Hi again Caroline. Thought I would just update you as I have finally heard from the genetics clinic. Not much information to add mind you. They have said the testing still hasn,t found where the missing  gene is and they are currently doing more investigations and tests on the tumour samples which again is going to take months. In the meantime they have sent open letters and the results of their findings so far and have advised me that it would be prudent for my sister,son and daughter to be tested and the information is for them to give their medical professionals. They will then be offered a colostomy where they place a camera in the back passage to have a good look at the bowel, intestine,rectum for polyps,lesions and abnormalities. Whilst I feel a little apprehensive that they have to go through this because of me I take the attitude that it's better to be safe than sorry because my cancer struck out of the blue. We are more heart and stroke problems rather than cancer but they say it's on the increase with one in two being affected now so who knows.just wish it didn't exist! So my family are all getting organised..I've been told nothing as to whether I will need more tests in the way of blood etc so I'm just holding on tight here waiting as usual hoping I get to hear the final outcome before this thing beats  me off the earth but that's another story. My husband has been given strict instructions to tell the family the outcome in the event that I am unable to as it is important but hopefully this will not be necessary. I hope you are keeping well Caroline and your problems and anxiety are lessening and that your investigations are going well. It takes ages and that in itself is not helpful in itself. God bless now and keep in touch. Love Lamb.xx

Oh Lamb it seems another shedload of problems have landed at your feet however your positive approach is so inspiring. I had a lump in my throat reading your post towards the end.

Sending you loads of hugs and positive vibes,

Barb xx 

Hi Little Lamb, thanks for your post, I have had my blood tests and now am just waiting patiently for the results, trying to put it to the back of my mind for the moment and trying to be as positive as I can. I have read your profile story and you really are such an inspiration, your positiveness and concern for others is so heart warming, whatever my  future holds for me I hope I can face it as bravely and as positively as you are doing. Thanks again, Caroline