Lynch Syndrome, awful symptoms, worried!

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Foreveryoung12
Posts: 3
Joined: Tue May 03, 2016 3:39 pm

Lynch Syndrome, awful symptoms, worried!

Postby Foreveryoung12 » Tue May 03, 2016 3:57 pm

My story finding out I have lynch... Skip to end for symptoms and worries.

I started having bleeding in November 2015. Associates it to hemmroids. Finally went to my general doctor in Janurary with horrible stomach pain.

Doctor said I was stressed and probably had IBS. (I have always had some stomach issues because I do not have a gallbladder). She sent me home with stress meds.
Saw her again a month later, still bleeding, stomach pain, going back between constipated and diarrhea. She put me on anti-depressants saying it was IBS and stress.

Saw OB in the meantime for my yearly check up. Mentioned my stomach pain and she sent me for an ultrasound which came back with a cyst on my ovary. I've had them before. She put me on a hormonal birth control to help since I was only on the mini pill.

Finally went to see GI Doctor in March. He said everything looked normal, but it was probably a hemmroids or fissure. He put me on ointment. I was also tested for Lynch Syndrome since my father had colon cancer at 41 and his father has lynch syndrome and had colon cancer in his 50-60s.



Came back positive for lynch syndrome. :( I have a colonoscopy on May 12. I am worried they will find something since I feel awful.

I am always tired. Back and forth between constipated and diarrhea. Have been bleeding off and on for several months. Also having mucus sometimes too. Stomach and back pain.

I am only 22!

Can someone calm my nerves until my colonoscopy?! I'm sure I'm just stressing!
Courtney Young
Lynch Syndrome MSH2

British HNPCC
Posts: 60
Joined: Sat Nov 05, 2011 7:45 am

Re: Lynch Syndrome, awful symptoms, worried!

Postby British HNPCC » Wed May 04, 2016 4:49 am

I too have Lynch. When they found cancerous polyp i had no symptoms. I was showing a bit of blood in my stools but always have, still do because of piles as i lift heavy weights. The good news is that you will be screened regulary and anything nasty will be sorted out if or when detected
Diagnosed with HNPCC/Lynch Syndrome in 2006
Polyp found Oct 11 advised that T3N2M0
Surgery Nov11 to remove colon/rectum and form temp ileostomy/J pouch.
Dec 11 Biopsy results = T1N0M0.
Feb 12 - Illeostomy takedown performed.

michelle c
Posts: 1929
Joined: Wed Dec 02, 2009 3:58 am

Re: Lynch Syndrome, awful symptoms, worried!

Postby michelle c » Wed May 04, 2016 6:09 am

Try not too stress, easier said than done but worrying will not help. Have the colonoscopy. All the "what ifs" will drive you crazy. For what's it worth, the only symptoms I had was blood and mucus in my stools before my diagnosis.

At least you know that you have Lynch syndrome, you will have lots of monitoring which is a good thing to help with cancer prevention. All the best for your colonoscopy. Hang in there!
May 25 2009 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair

orcasres
Posts: 836
Joined: Mon Jul 01, 2013 10:23 pm
Location: Orcas Island, WA

Re: Lynch Syndrome, awful symptoms, worried!

Postby orcasres » Wed May 04, 2016 12:57 pm

Knowing you have Lynch will enable you to get the regular screening you need starting early in your life without having to fight the normal battles of "your are too young to need a colonoscopy". You should be having a session with a genetic counselor to make sure you understand the ramifications of having Lynch, and I know it is so hard, but try to relax before your colonoscopy. Work with the GI's office and make sure that you clean out thoroughly before you have your scope so they can see clearly what is going on in there. We are rooting for you. Please get back to us and let us know how it is going. Lois
63 yo F
Colon resection Sept. 2010
pT3N0M0 Stage 2A
Medullary Tumor 6.5cm long
Lymphovascular invasion
Lynch negative
12 FOLFOX 11/2010 to 5/2011 8 w/Oxi
NED so far

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Lynch Syndrome, awful symptoms, worried!

Postby DarknessEmbraced » Wed May 04, 2016 2:30 pm

I agree it's best to talk to a genetic counselor to find out about Lynch Syndrome. I'm glad you're getting a colonoscopy.*hugs* The prep is the worst part. You have sedation for the colonoscopy so you don't remember it or feel pain. I know it's really hard not to stress. We are here for you!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Foreveryoung12
Posts: 3
Joined: Tue May 03, 2016 3:39 pm

Re: Lynch Syndrome, awful symptoms, worried!

Postby Foreveryoung12 » Wed May 04, 2016 8:02 pm

Thank you! Trying not to stress. Waiting is the hardest part. I hope they at least find a polyp or hemmroids (nothing serious) just so I don't feel crazy because of all my symptoms!
Courtney Young
Lynch Syndrome MSH2


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