Katie Kennedy
  • Council Bluffs, IA
  • United States
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Katie Kennedy's Friends

  • Marilyn Rodine
  • Jeanne A
  • Martha
  • Colon Cancer Alliance

Katie Kennedy's Discussions

Any one know about AFAP?

Started this discussion. Last reply by Dee Davidson Mar 9, 2012. 3 Replies

I went to the oncologist on the 29th.  He decided I didn't have Lynch, because Lynch isn't related to polyps and colon cancer.  Wow, how uninformed is he?  Any way, besides firing him, I did want to…Continue

Tags: test, genetic, lynch

Questions for the Oncologist

Started this discussion. Last reply by Jeannie Moore Feb 27, 2012. 8 Replies

I am all healed from the surgeries, so now we are going to decide what steps I need to take next.  I see the Oncologist the 29th, who is also a doctor that works with a team of specialists for rare…Continue

Tags: polyps, oncologist, questions, precancerous, II

 

Katie Kennedy's Page

Profile Information

City
Council Bluffs, IA
Race and Ethnicity [select only one]
White (non-Hispanic)
What is your connection to colorectal cancer [select only one]
Patient/Survivor
Type of Cancer [select only one]
Colon Cancer
What stage at diagnosed [select only one]
Stage 2
About Me
I am 45 years old, I have Lynch Syndrome. I never knew I had this, the doctor told me I have had these polyps growing in me since I was in my 20s. They found this by accident. A large mass showed up on an MRI. I had a colonoscopy and they removed 15 polyps, then did another to remove a large polyp. Then I had surgery to remove 14 inches of my colon, my doctor said she needed to create a new blood supply source to my rectum, because this one was bad. They also did a complete hysterectomy.

Comment Wall (7 comments)

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At 8:05pm on February 15, 2012, Vanessa Brannan said…

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

At 11:44am on February 2, 2012, Janelle Hill said…

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

At 2:32pm on February 1, 2012, Jeanne A said…

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

At 10:06am on February 1, 2012, Jeannie Moore said…

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

At 5:03pm on January 31, 2012, Noho Jenkins said…

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


At 4:31pm on January 31, 2012, Noho Jenkins said…

Hello  Katie,

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

Sincere  regards

At 3:38pm on January 31, 2012, Martha said…

Hi Katie,

Welcome to our online community. I know that you will meet many friends here on this site all offering support and encouragement. 

 

I am sure that you must have many questions about your diagnosis and the HNPCC/Lynch Syndrome diagnosis.  I hope that you will listen to our archived chat from Dr. Tom Weber.  He presented a very informative webinar about hereditary colorectal cancers, including HNPCC. 

 

Please don't hesitate to call our Helpline M-F 9:30-4:30 PM ET 1 877 422-2030 if you would like to ask any specific questions.

 

We are here to help,

Sincerely,

Martha Raymond

Patient Support

1 877 422-2030

 
 
 

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