Lynch syndrome

Please feel free to read, share your thoughts, your stories and connect with others!
Wendytropics
Posts: 11
Joined: Tue Apr 26, 2011 2:15 pm

Lynch syndrome

Postby Wendytropics » Sat Jun 11, 2011 8:04 pm

Just found out that I have lynch syndrome after having a large stage II mass. I am 33 and not much experience with this. Any advice or people with experience.
34 yr old mom of 2
Diagnosed April 2011
Colon resectioning
Stage 2 tennis ball size mass
Lynch syndrome June 2011

Reoccurance July in liver2011
6 rounds folfox
Liver resection October
6 rounds fofuri (done in march2012)

mike's wife
Posts: 27
Joined: Wed Jul 07, 2010 8:57 am
Facebook Username: hdampf
Contact:

Re: Lynch syndrome

Postby mike's wife » Wed Jul 06, 2011 12:21 pm

My husband has been diagnosed with Lynch as well. He had a right hemicolectomy last July and Lynch was finally confirmed in January. It's a roller coaster to say the least. Right now we are trying to convince his parents and siblings to get tested, but they are continuing to list all the reasons why they shouldn't. It's very frustrating.

We attended a conference at Mayo a couple of weeks ago about Living with Lynch. It is held every year and I highly recommend going if at all possible. Not sure where you are located, but maybe something similar is in your area.

We are learning as we go. The important thing to remember is that Lynch is not a life sentence. Sure, it sucks, but at least you know you have it and can be proactive in your screenings. Unfortunately, many doctors are not familiar with it so it's up to you to advocate for yourself.

Lynch Syndrome International is a good site for information too.
Stage 1 CC dx June 25, 2010
Right hemi on July 12, 2010
Clean colonoscopy on December 16, 2010
Lynch Diagnosis (MSH2) January 2011
Prophylactic Subtotal Colectomy December 9, 2011
http://www.mikesbattleismybattle.blogspot.com

Wendytropics
Posts: 11
Joined: Tue Apr 26, 2011 2:15 pm

Re: Lynch syndrome

Postby Wendytropics » Wed Jul 06, 2011 4:36 pm

Thanks for the info. My doctors are full supporters of lynch syndrome and extra tests for me considering I have it. The only extra surgery I have to have now is a hysterectomy to avoid cancer in the "girl parts" since lynch syndrome effects those parts. I am done having kids so I am ok with it but concerned about being thrown I to menopause at age 34.
34 yr old mom of 2
Diagnosed April 2011
Colon resectioning
Stage 2 tennis ball size mass
Lynch syndrome June 2011

Reoccurance July in liver2011
6 rounds folfox
Liver resection October
6 rounds fofuri (done in march2012)

seva
Posts: 413
Joined: Tue Jun 22, 2010 2:28 pm

Re: Lynch syndrome

Postby seva » Wed Jul 06, 2011 5:58 pm

There is a good chance either radiation or chemo will put you in early menopause, it did for me. Although I am a older than you and hated the idea of menopause coming earlier than expected.It is a no win situation, the bright side is your family is complete.
RC 10/09
Stage IIA
Chemorad 6 weeks, 5fu 24/7
LAR 2/10
Reversal 4/10
Chemo 5fu 2 rounds -1 week on 3 weeks off
ct scans 9/10 , 3/11,9/11, 9/12 NED!!!

KimT
Posts: 695
Joined: Sat Feb 20, 2010 8:53 pm

Re: Lynch syndrome

Postby KimT » Wed Jul 06, 2011 7:47 pm

I have lynch as well. In same ways I think we are better off than those who don't. We get so much extra screenings that early detection is almost certain in the case of a reoccurance. I have chosen not to do the hysterectomy for another 5 years. I had a second colon resection last march and debated having the hysterectomy done at the same time to avoid another surgery down the line. Ultimately after consulting when three obgyns, one of whom is an expert in female cancers, i decided to wait another 5 years. I am only 33 and i think that's too soon to go into menopause. The expert in female cancers told me as long as I follow up on my recommended screenings it will catch uterine and/or ovarian cancer early. The recommended screening is a uterine biopsy and vaginal ultrasound yearly. I would reconsider doing it so soon. HRT comes with its own risks.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

JAZZToo
Posts: 509
Joined: Sun Oct 01, 2006 10:46 am
Location: New York City

Re: Lynch syndrome

Postby JAZZToo » Thu Jul 07, 2011 6:33 am

Just because a person has Lynch Syndrome doesn't mean that a cancer will develop. My brother and I both have Lynch Syndrome. I have had two Lynch cancers - endometrial at age 49 and colon at age 57. My brother, 62 years old has not had any cancers, but is following the screening recommendations for Lynch to catch anything (that may or may not) develop in the future at the earliest possible stage.

JAZZ


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 110 guests