New diagnosis

I have lynch syndrome- Like you I was diagnosed with endometrial cancer- I had a hysterectomy in June and they took 14 lymph nodes out which showed no cancer. Unfortunately the cancer had gone through more than half the womb lining so I was diagnosed with carsinosarcoma which is an aggressive form of cancer.  I was asked if I wanted to be tested for lynch syndrome- I have 3 daughters so really wanted to know. My test came back positive and I was gutted for my daughters. It was one thing after another  but we are getting through it - All 3 are going through testing  and although initially it was devastating we all agree it is good to know as they will be monitored and if necessary have a hysterectomy.

It is not the end of the world if you have it as your children will be monitored closely. Good luck

Thank you. How is your treatment going? 

I have had 4 x chemo but it was not working so I am on immunotherapy and so far so good

Good luck xxxxx

I'm currently undergoing genetic testing for Lynch syndrome.

I had surgery for bowel cancer last August, and the pathology of the tumour showed something called MSI- H (microsatellite instability), which apparently is a potential indicator of Lynch syndrome.

My orginal staging CT scan for the bowel cancer also showed a thickened uterus, which was flagged to be followed up after I recovered from the bowel surgery. It was ,and so a few weeks ago I had a hysterectomy + removal of tubes & ovaries after the results of a hysteroscopy biopsy showed endometrial cancer. 

Hi. I am a daughter with the knowledge I had Lynch Syndrone. When I recently started to show symptoms I pointed it out and my diagnosis was so fast as the NHS were....ah yes. I have been caught early so am optimistic. I was grateful to have the knowledge. I send you and your family best wishes and hope this helps. 

Hi

I was told my Cancer was Genetic and on my NHS app the letter sent to my Drs said that I was showing a loss in MSH6 protein and Pole has been requested??

Had my meeting on Wednesday this week with the Consultant and pre-op but she said that this would be looked at after the op and they would then confirm if I had it. 

I am provisionally Stage 1a but Grade 3 and I was called yesterday and booked in for Total Hysterectomy on the 10th Feb..I can deal with everything thrown at me ..I have no choice but this I find so hardas I want to know if I have it and have passed it onto my 2 sons...and then grandchildren

Hopefully I will have the answer in a few weeks 

Linda

JUst gonig by my personal experience, it ls only when they can fully examlne the tumour and other parts they remove via surgery that they can make a definitive statement on both the staging and any genetic or other conditions involved.

Yes I do understand that but the waiting is the worst I think because it's my children and instinct is to protect them...they are my eldest is 35 this year if he has it then he will start to have Colonoscopies from now .. hopefully not get cancer find out very early and be treated .

Linda - I am in the same boat as you- I found out I had lynch syndrome in October- We have 3 daughters and 4 grandchildren and the thought of passing it on to them is awful. There was a lot of cryinand emotion at tge time but now they all say its a good thing as at least they will be monitored. Trouble is it takes soo long- they have all had telephone conversations with the Genetics and 2 havead blood tests but it will be another 4-6 weeks before they know if I have passed on the gene It's bad enough dealing with cancer yourself but to find you may have passed it on to your children takes a lot of coming to terms with. We are praying all our daughters come back negative and I ho your children do