Hi Katie!  

I also have Lynch Syndrome.  My mom (a nurse) and I did a LOT of research before I started my chemo, and most of what we read showed that with Lynch, outcomes were usually the same or better without chemo.  And 5FU on it's own is NOT okay-- it reduces survival rates!  The Fight CRC website has a lot of great info on Lynch-- just type Lynch into the search window.  

I had my surgery in November and lost my entire colon, so I have an ileostomy now.  I'm currently hooked up to the IV for my third round of Folfox chemo.  At least with Lynch we have much better survival rates than sporadic cancer.  Gotta look for the positives, right?

As soon as my chemo is over, I'm going for my full hysterectomy as well.  At least we just finished having kids.  Not looking forward to menopause at 31 though!

Anyway, I've done more research than I probably should have on Lynch-- let me know if you want any info and I'll see if I can point you in the right direction.  

Vanessa

Hi Katie,

Welcome to our online community.  Wow! It sounds like you have been through so much in such a small amount of time.  I am so thankful that they were able detect the Lynch Syndrome.  Now that you have been diagnosed with the disease, have any of your family members been tested?  What is your treatment plan going forward?

As Martha and Jeannie said, there are many great people here in our community that have Lynch Syndrome so please feel free to post questions or comments on our message board.  It can be a great resource for information.

I look forward to hearing from you soon.  Please let us know how we can help.

Take care,

Janelle Hill

Patient Support

Hi Katie, welcome to the MyCRC Community!  You were diagnosed so recently and have still been through so much.  I'm also a survivor, diagnosed with stage 4 colon cancer in Oct 2005.  I don't have Lynch Syndrome, but there are others here who do.  

What is your treatment plan going forward?  As Jeannie asked, will you have chemo?  If you're up for it, come join us in the chat room sometime.  We have scheduled chats M-F 11-12am CST, and again Weds at 7-8 pm CST.

(By the way, I lived in Omaha for 10 yrs, between 1987 to 1997.  I don't miss snow shoveling!)

Looking forward to getting to know you better,

Jeanne A

Welcome Katie, glad you are here.  I'm sure you still in shock!  We have many members here with lynch.  Knowledge is power.  You are at high risk for other cancers i.e. uterine, endometrio, ovarian, etc. so make sure your gyn gets a copy of this path report.  Even with a hysterectomy, you still need exams - did they take your cervix too do you know?

My fav site: http://ghr.nlm.nih.gov/condition/lynch-syndrome

Are you going to do chemo?  We meet in chat daily 12-1 EST so i hope you can pop in.  We also meet tonight 8-9 pm EST - a few lynchers are usually there.  I can also match you up with one-on-one buddies.  Just call us on the helpline - 877-422-2030.

Best thing to recover is walking - don't overdo, but do your best to walk each day.  I look forward to hearing more about your journey.

fondly,

jeannie moore

patient support

www.ccalliance.org

877-422-2030

Thanks  Katie,  your  very  kind.

It's  not  that  I'm  un-grateful  I've  made  it  this  far,  (Yea  me,  you,  &  other's)  it's  the  devastation  it's  left  in  it's  wake.  I  often  wonder  if  it  was  all  worth  it.  I'm  a  wreck  in  all  areas  of  my  life.  Now  I  reach  out  to  America  for  comfort,  yet  with  that  you  are  all  cool  people.  6  years  on,  and  no  one  here  really  knows  what  I've  been  through,  seen,  felt,  and,  or  experienced.  Comments  like  your's,  and  from  the  others  I  receive  from  this  website  are  comforting,  I  should come  to  America,  and  move  into  the  community.  I  feel  I'm  no  longer  from  here.  Anyway  boo  whoo  me

Again  I  thank  you,  and  wish  you  all  the  best.

Sincere  regards

Hello  Katie,

Good-Health  &  Well-being  to  you  on  your  road  to  recovery.

Sincere  regards