looking for research on lynch recurrence

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-Sophie-
Posts: 67
Joined: Mon Apr 08, 2013 12:47 am

looking for research on lynch recurrence

Postby -Sophie- » Sun Sep 22, 2013 10:21 pm

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.
29 yo f w daughters 5 & 2
Dx nov 2012- 3c (T4N2M0)
Chemo/rad Dec 2012 - Jan 2013
16 march 2013 LAR + rad hyst, temp ileostomy
Patho no viable cancer found, 0/10 lymph nodes
April - June 2013 Chemo 5fu, 4 rounds
July 31st 2013 reversal and port removal

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

Re: looking for research on lynch recurrence

Postby orcasres » Mon Sep 23, 2013 1:58 am

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
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

surpasstx
Posts: 26
Joined: Wed Feb 13, 2013 11:27 pm

Re: looking for research on lynch recurrence

Postby surpasstx » Mon Sep 23, 2013 2:28 am

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
01/17 Wife (44) DX Stage 3b CC Sigmoid, 2/17 positive
MSi-High, presumed Lynch syndrome
02/13 first round of chemo
08/13 done with chemo
Hoping and praying...

Colonless in NY
Posts: 21
Joined: Tue Aug 03, 2010 4:49 pm
Location: Brooklyn, NY

Re: looking for research on lynch recurrence

Postby Colonless in NY » Mon Sep 23, 2013 12:04 pm

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.
-Colon cancer, Stage I @ 43
-Total abdominal colectomy with ileorectal anastomosis (July 2010)
-Endometrial cancer, Stage IIIc @ 41
-Hysterectomy w BSO, Sept 2008
-28 sess pelvic rad + chemo of Taxol/Carboplatin (Oct. 2008 - Feb 2009)
-Lynch Syndrome

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very worried husband
Posts: 130
Joined: Mon Mar 28, 2011 1:20 am

Re: looking for research on lynch recurrence

Postby very worried husband » Mon Sep 23, 2013 12:09 pm

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:
Caregiver to Wife age25
Diagnosed Colon IIIB Jan2011
7/29 Nodes +
5FU+Oxi in china. Feb-Aug 2011
CEA@Diagnose:0.79
Immunological chemistry: Ki-67 (+), MSH2(+), MLH1(++), ERCC1 (-)
NED Supplements: Aspirin,Vit D,Calcium, Genoderma Lucidium
Baby born June 2015 :D :D :)

mymaria
Posts: 132
Joined: Wed Jan 20, 2010 2:17 pm

Re: looking for research on lynch recurrence

Postby mymaria » Mon Sep 23, 2013 12:39 pm

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.
Endometrial cancer stage 1B grade 3, July '09 age 43
34 negative l.n.
Radiation Aug. and Sept., '09
Colon cancer T3N0M0, grade 3, Dec. '09
54 negative l.n.
Modified Folfox 6 regime started Jan. 12, '10
Stopped after 3 rounds Feb. 9, '10
Lynch Syndrome

disco nap
Posts: 991
Joined: Sat Aug 07, 2010 10:45 am

Re: looking for research on lynch recurrence

Postby disco nap » Mon Sep 23, 2013 7:06 pm

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.
DX July 2 '10 CC Stage IIIC, 11/18 nodes+
Right Hemi July 6 '10
Folfox: Aug 17'10 - Feb 17'11
Mar 2012: Lynch Syndrome MLH1
"Declared well" and been well ever since.
Update: Oct 2019 - still NED.

-Sophie-
Posts: 67
Joined: Mon Apr 08, 2013 12:47 am

Re: looking for research on lynch recurrence

Postby -Sophie- » Tue Sep 24, 2013 12:13 am

Thanks for the link. That is some really helpful info.
29 yo f w daughters 5 & 2
Dx nov 2012- 3c (T4N2M0)
Chemo/rad Dec 2012 - Jan 2013
16 march 2013 LAR + rad hyst, temp ileostomy
Patho no viable cancer found, 0/10 lymph nodes
April - June 2013 Chemo 5fu, 4 rounds
July 31st 2013 reversal and port removal

User avatar
very worried husband
Posts: 130
Joined: Mon Mar 28, 2011 1:20 am

Re: looking for research on lynch recurrence

Postby very worried husband » Tue Sep 24, 2013 7:19 pm

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?
Caregiver to Wife age25
Diagnosed Colon IIIB Jan2011
7/29 Nodes +
5FU+Oxi in china. Feb-Aug 2011
CEA@Diagnose:0.79
Immunological chemistry: Ki-67 (+), MSH2(+), MLH1(++), ERCC1 (-)
NED Supplements: Aspirin,Vit D,Calcium, Genoderma Lucidium
Baby born June 2015 :D :D :)

LabLover
Posts: 65
Joined: Tue Sep 24, 2013 7:50 pm

Re: looking for research on lynch recurrence

Postby LabLover » Tue Sep 24, 2013 7:58 pm

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.

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Bob Bones
Posts: 162
Joined: Tue Jan 22, 2008 2:32 pm
Facebook Username: markcooper1968@btinternet.com
Location: UK

Re: looking for research on lynch recurrence

Postby Bob Bones » Wed Sep 25, 2013 4:15 am

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
Sigmoid Tumor 5cm T(3) , 11/23 nodes
Stage IIIC at age 37, Poorly differentiated
Surgery 23/01/06 ( Laparoscopic )
Converted to Formal because of my anatomy!
6 months of Xeloda
NED 10 years (touch wood)
Lynch Syndrome MSH2

-Sophie-
Posts: 67
Joined: Mon Apr 08, 2013 12:47 am

Re: looking for research on lynch recurrence

Postby -Sophie- » Wed Sep 25, 2013 7:51 am

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.
29 yo f w daughters 5 & 2
Dx nov 2012- 3c (T4N2M0)
Chemo/rad Dec 2012 - Jan 2013
16 march 2013 LAR + rad hyst, temp ileostomy
Patho no viable cancer found, 0/10 lymph nodes
April - June 2013 Chemo 5fu, 4 rounds
July 31st 2013 reversal and port removal

LabLover
Posts: 65
Joined: Tue Sep 24, 2013 7:50 pm

Re: looking for research on lynch recurrence

Postby LabLover » Wed Sep 25, 2013 8:26 am

-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.

User avatar
very worried husband
Posts: 130
Joined: Mon Mar 28, 2011 1:20 am

Re: looking for research on lynch recurrence

Postby very worried husband » Wed Sep 25, 2013 1:09 pm

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?
Caregiver to Wife age25
Diagnosed Colon IIIB Jan2011
7/29 Nodes +
5FU+Oxi in china. Feb-Aug 2011
CEA@Diagnose:0.79
Immunological chemistry: Ki-67 (+), MSH2(+), MLH1(++), ERCC1 (-)
NED Supplements: Aspirin,Vit D,Calcium, Genoderma Lucidium
Baby born June 2015 :D :D :)

mymaria
Posts: 132
Joined: Wed Jan 20, 2010 2:17 pm

Re: looking for research on lynch recurrence

Postby mymaria » Wed Sep 25, 2013 1:54 pm

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.
Endometrial cancer stage 1B grade 3, July '09 age 43
34 negative l.n.
Radiation Aug. and Sept., '09
Colon cancer T3N0M0, grade 3, Dec. '09
54 negative l.n.
Modified Folfox 6 regime started Jan. 12, '10
Stopped after 3 rounds Feb. 9, '10
Lynch Syndrome


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