Lynch Syndrome

Thanks to all of you and sorry I haven't been back in touch sooner - it's our summer school holidays in Australia and it has been very busy!

Phillydoc - thanks for these statistics - they are really useful and I will try and get the article. I have been quoted 18-30% colorectal cancer risk and 73% endometrial and unknown for other cancer types. The new research suggests much lower risks for MSH6.

Humblebumble - I am also now considering adoption, so it was really helpful for me to hear that you have done so successfully. Now I just need to convince my husband :-)
On the aspirin front, my consultant has put me on 600mg soluble aspirin per day as per the recent research. We discussed me going in the next trial but he thought that as the 600mg seemed to work, I couldn't risk an ineffective dose as my kids are so young.

Kren - I'll ask my doctors about the uterine biopsy. I would love to have a child asap - but may be difficult as I am 43 now.

Will keep you all posted and thanks again for the help and support. It really does mean a lot!

Hi. I am not even sure if this is an active thread but wanted to post about today. I have Lynch (MLH1) and nine days ago had a total hysterectomy including ovaries. I am 46 so it was not a tough choice to make. Anyway, at my post op today I was told I already had developed precancerous cells and that I had really dodged a bullet.

Woo hoo!!

Glad you're ok, just had my hysterectomy and bso, all clear

Queenofthedance - Yeah - glad to hear that you had your hysterectcomy in time! I was 46 when I had mine - am 48 now. While having a hysterectomcy sucks - it is way better than having to deal with cancer.

Any advice?

I recently had a hysterectomy removing the cervix and uterus only because of precancer cells(i'm 40) and this was November 30th. After they said it was endo cancer stage 1. But all removed so I'm good. I suggested to the gyne oncologist that we do some genetic testing and I just got the news today that i have the MSH6 gene. Which I believe is Lynch Syndrome? He was very uninformative and I was left feeling really lost. He told me to schedule a colonoscopy and call a genetic cancer center. My ovaries were left and I'm also getting another Ultrasound on Friday to check them out. Am I headed in the right direction? My Dad died at 37 of Melanoma skin cancer and my Grandma died in her 70's of Stomach cancer but that is all I'm aware of.

Hi Allyolly,

Well that was probably not the news you wanted to hear! So sorry. I think you will find meeting with someone from a genetic center very helpful. I went armed with many, many questions which they answered in much detail. Also, they can give you information about different protocols. For example, I was told that daily aspirin can reduce the risk of colon cancer by about 40%. However, since it might take a while to get your foot in the door, in the meantime you can get your medical testing done. Besides the colonoscopy and ovarian sonogram, your doctor may also want you to have the CA125 blood test for ovaries and also a renal sonogram. That at least is what I had to do but I am MLH1 which is a completely different animal but still called Lynch. Good luck!!

I can't tell you how much I appreciate this! Thank you for responding so promptly. I'll keep u posted!

Hi allyolly2 - You are definitely headed in the right direction with a genetest doctor. They can really explain things to you. Now that you know you have Lynch, you just need to do regular screening to remain healthy. Yearly colonoscopies, bladder checks, endoscopies(stomach). When you schedule your colonoscopy ask for an endoscopy at the same time. The endoscopy is a check of the stomach and small intestine(the top part) and you have to do it while you are under anesthesia so get both done at the same time. Tell the doctor you have Lynch and a family history of stomach cancer (Grandma).

If you have siblings inform them as they all have a 50/50 chance of also having Lynch.

Good luck and let us know how you are doing.

You are absolutely right Kren! Can't believe I forgot about the endoscopy!

Allyolly you might want to come up with some sort of testing checklist that lists the tests, frequency suggested and date completed. For instance, even though I have the colonoscopy every year I only have the endoscopy every third time. Having a game plan really helps!!!

You are both wonderful! Thank you again. I'm making all my notes to take with me!!!