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looking for research on lynch recurrence

Posted: Sun Sep 22, 2013 10:21 pm
by -Sophie-
I have just had confirmation about my lynch status (positive, but not a surprise). Has anyone found any research on recurrence rates for lynch positive patients. I am waiting for my genetic counselling session in a few weeks but like to start reading about it.

Re: looking for research on lynch recurrence

Posted: Mon Sep 23, 2013 1:58 am
by orcasres
I fortunately did not test positive for Lynch, but my surgeon, the pathologist, and the genetic counselor were all sure I would be, so I spent a lot of time researching between the time I was tested and the time I got the test results, which was nearly 3 weeks later. One thing to be giving serious thought to is determining which of your relatives will need to be tested. My brother had died of a heart attack at age 47 so if I had been positive, it would have been necessary to test my brother's children as well as my own. My mother would probably have been tested as well, however she is in her 80's and somewhat paranoid about health issues, so I am not certain we would have had her tested at that point. There will probably need to be testing done for your parents and then siblings. Because your test will have defined what genes are involved, the testing for family members will be more targeted (and less expensive as a result).

One point that the genetic counselor made to us is that while health insurance cannot be denied due to Lynch syndrome, life insurance can. Our sons were in their 20's when I was tested and if it had been positive, we would have given them early Christmas presents of life insurance policies BEFORE we got them tested for Lynch.

Your genetic counselor will give you good information; you might be able to get some information before the appointment if you requested it. The next most common Lynch cancer is uterine and I was told that risk was significant. I was past the point of having any children, so it was recommended that I consider a hysterectomy if I was positive.

I am sorry that you are facing this, but there are several folks on this board with Lynch and they will have more complete information to offer.

Best wishes, Lois

Re: looking for research on lynch recurrence

Posted: Mon Sep 23, 2013 2:28 am
by surpasstx
My wife is presumed Lynch positive - she has a variant of uncertain significance. From what I understand, Lynch cancers have a significantly lower rate of recurrence in the form of distant metastases (close to 90% chance of recurrence-free survival). However, there is a high risk of recurrence (as much as 50%) in the form of a new primary cancer. Frequent screening (via annual colonoscopies with dye to detect sessile polyps, trans-vaginal ultrasounds, and EGD ) ,and possible prophylactic colostomy and hysterectomy are recommended courses of action.

Ray

Re: looking for research on lynch recurrence

Posted: Mon Sep 23, 2013 12:04 pm
by Colonless in NY
Hi Sophie:

The good news about having Lynch, is that there we are not high risk for recurrence. The bad news is that we are still high risk (compared to the general population) for a host of other gastro-related primary cancers, as well as brain, skin, and most recently, breast. However, after colo/rectal and endometrial cancer in women, the risk factors, while still high, drop dramatically. Lynch Syndrome International is a great site with good information. Here's a link to a chart showing lifetime risk statistics, http://www.lynchcancers.com/index.php/for-professionals (which I personally try not to obsess over). I've made peace with my Lynch status. I receive excellent treatment and through a multitude of agressive screenings throughout the year, I figure if I'm going to get another primary cancer, it will at least be caught early.

Re: looking for research on lynch recurrence

Posted: Mon Sep 23, 2013 12:09 pm
by very worried husband
Thanks Colonless in NY for sharing the link. As lynch syndrome victim, my wife says she does not mind a new cancer which is either stage 1/2, but she would definitely hate recurrence for the colon cancer... :wink:

Re: looking for research on lynch recurrence

Posted: Mon Sep 23, 2013 12:39 pm
by mymaria
I am 47 and when I was 43, I had two separate, distinct primary cancers: uterine and colon. I am positive for Lynch, as is my now 21-year-old daughter. Four of my five siblings have been tested-just found out last week one of my brothers is positive and my sister is having her blood drawn next week to be tested, so within a month or so all six of us will know. I have an annual colonoscopy and from the research I've done, Lynch cancers do not tend to spread. That's not saying it can't happen. My two were not a spread-just two cancers I happened to have at the same time. On Dec. 4, 2009 I had half of my colon removed and have been cancer-and polyp-free since :-) I will continue with the annual colonoscopies and feel confident if there is anything lurking in my colon, the doctors will find it early.

Re: looking for research on lynch recurrence

Posted: Mon Sep 23, 2013 7:06 pm
by disco nap
surpasstx wrote:My wife is presumed Lynch positive - she has a variant of uncertain significance. From what I understand, Lynch cancers have a significantly lower rate of recurrence in the form of distant metastases (close to 90% chance of recurrence-free survival). However, there is a high risk of recurrence (as much as 50%) in the form of a new primary cancer. Frequent screening (via annual colonoscopies with dye to detect sessile polyps, trans-vaginal ultrasounds, and EGD ) ,and possible prophylactic colostomy and hysterectomy are recommended courses of action.

Ray


Yes, this has always been my understanding also - a lower risk of recurrence, but a (much) higher risk of a new primary.

Re: looking for research on lynch recurrence

Posted: Tue Sep 24, 2013 12:13 am
by -Sophie-
Thanks for the link. That is some really helpful info.

Re: looking for research on lynch recurrence

Posted: Tue Sep 24, 2013 7:19 pm
by very worried husband
Dear All! i have a question about CEA of Lynch members....
my wife has Lynch Syndrome with MSH2(+), MLH1(++), and her CEA is below 2 . what are your CEA levels? Is it true that people with Lynch tend to have low CEA?

Re: looking for research on lynch recurrence

Posted: Tue Sep 24, 2013 7:58 pm
by LabLover
This is my first post on the forum. I just found this online community this afternoon. I'm 37 yo female diagnosed with Stage3 rectal cancer in May. I found out I have Lynch Syndrome in June despite zero family history. I have the PMS2 mutation which can be a more "mild" than some other mutations which might explain the lack of family history.

Anyway my cea before treatment was 1.0.

I'm having a complete hysterectomy with my resection surgery in a few weeks. I figure I can screen for colorectal cancer with regular colonoscopies, but wanted to virtually eliminate other high probability cancer risks.

Re: looking for research on lynch recurrence

Posted: Wed Sep 25, 2013 4:15 am
by Bob Bones
What I've read about Lynch is conflicting but if it's of any help my diagnosis of 3C is the same as yours and I'll be 8 years cancer free soon after Christmas

Re: looking for research on lynch recurrence

Posted: Wed Sep 25, 2013 7:51 am
by -Sophie-
Interesting about cea levels, mine has stayed in the normal range since diagnosis.

I also have the psm2 mutation which could be why there is no family history.

Re: looking for research on lynch recurrence

Posted: Wed Sep 25, 2013 8:26 am
by LabLover
-Sophie- wrote:Interesting about cea levels, mine has stayed in the normal range since diagnosis.

I also have the psm2 mutation which could be why there is no family history.

Yes, everything I've read about pms2 as well as information from my genetic counselor indicates that the occurrence of Lynch cancers in pms2 patients is significantly lower than other mutations; however still higher than general non-Lynch population.

Re: looking for research on lynch recurrence

Posted: Wed Sep 25, 2013 1:09 pm
by very worried husband
Hi lablover and Sophie,

When my wife was diagnosed in china with (CEA 1.79 i think!), one of the dr ( whose english was not v good) told me that Lynch patients ends to have lower CEA and better prognosis but still you never know about this disease. I was just checking this and was curious to know any Lynch with higher CEA?

Re: looking for research on lynch recurrence

Posted: Wed Sep 25, 2013 1:54 pm
by mymaria
When diagnosed with colon cancer, my CEA was less than 1.5. For some people, CEA is not a good indicator. There are others here whose CEA doesn't rise with a colon diagnosis and they don't all have Lynch. I have the MSH2 mutation.