Lynch Syndrome

corey50
corey50 Member Posts: 111
in Breast Cancer #1

Hi all,

Has anyone here had genetic testing for Lynch Syndrome? Its basically a test for colon cancer, but it can predispose you to other cancers also, so sometimes the genetic counselors recommend it to other cancer dx as well.  The genetic counselor recommended it when I went for the BRCA test and said that because Lynch Syndrome can also predispose you to female cancers of the uterus, ovaries they usually run it with the BRCA.

I had breast cancer and kidney cancer and so was advised to get this test, but don't know how I feel about it.

Thoughts from anyone who's familiar with it is appreciated.

Thanks and continued good health to all.

Comments

  • button2
    button2 Member Posts: 421
    #2
    Thank you

    I have never heard of this before and I appreciate the info. If I were you, I would get any test I can if it has no side effects! Good luck going forward...

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #3
    I had it done last year.  

    I had it done last year.   Although I am from the uterine board I wanted to reply.  i was diagnosed after a routine hysterectomy with endometrial adenocarcoinoma grade 2 stage 3 at age 45 in September of 2005.  Because of recent problems I was experiencing my new doctor thought I would be a candidate for this testing because I was under the age of 45 for this cancer and my grandfather had coliN cancer.   I then met with the genetics counselor.   The only thing the did was take the family history and then had my original slides from my initial diagnosis yo have the sample tested.   If the testing came back positive I would have also had a blood test.   However it came back negative.   It was strange though cause my sample was over 9 years old.  

     

    If if you test positive for lynch it just puts you at more risk and the doctors will look at your symptoms more if you have any.   They Also woild require more colonoscopIes.    Alsi if it is positive you could then have your family members tested to see if they carry it.   It doesn't mean you will get cancers but it is used as a tool for better diagnosing symptom.

    i hope this helps

    Kathy

  • fauxma
    fauxma Member Posts: 3,577 Member
    #4
    Kaleena said:

    I had it done last year.  

    I had it done last year.   Although I am from the uterine board I wanted to reply.  i was diagnosed after a routine hysterectomy with endometrial adenocarcoinoma grade 2 stage 3 at age 45 in September of 2005.  Because of recent problems I was experiencing my new doctor thought I would be a candidate for this testing because I was under the age of 45 for this cancer and my grandfather had coliN cancer.   I then met with the genetics counselor.   The only thing the did was take the family history and then had my original slides from my initial diagnosis yo have the sample tested.   If the testing came back positive I would have also had a blood test.   However it came back negative.   It was strange though cause my sample was over 9 years old.  

     

    If if you test positive for lynch it just puts you at more risk and the doctors will look at your symptoms more if you have any.   They Also woild require more colonoscopIes.    Alsi if it is positive you could then have your family members tested to see if they carry it.   It doesn't mean you will get cancers but it is used as a tool for better diagnosing symptom.

    i hope this helps

    Kathy

    I was tested for Lynch

    I was tested for Lynch syndrome because I had uterine, skin cancer, bladder cancer and breast cancer.  I also had a skin lesion that is common with Lynch syndrome.  I do have this syndrome with Muir Torre as a subset.  I do yearly colonoscopies (have had pre cancerous polyps the last two years), yearly bladder scopes, see the dermatologist for full body checks, see a gyn onc yearly and a breast cancer oncologists.  The chances are increased for several types of cancer so they are diligent at checking which is a good thing.  My brother was tested and does not carry have it.  My sister chose not to be tested.  She has no children and has had breast cancer.   She had a total hysterectomy for fibroids a long time ago and she knows what to watch for.  My daughter has not been tested yet but now she has health insurance she is considering it.  She has two children (6 and 10) so she wants to find out if she has this not just for her but for them also.  If she does not have it then they cannot have it.  I am hoping that she is clear when she gets tested.  We are not sure which parent carried this but our best guess is my dad's side.  He died of a massive coronary at the age of 48 so he didn't have any of the cancers but his father had stomach and colon cancer.  My mom's side of the family did not have any cancers that we know of.  I think it's good to know that I have this because as I said they really keep a eye on me.  When I have any problems they are right on top of everything.  I have had several types of skin cancers sebaceous, basal and squamous that have been found during skin checks.  And like I said they have removed pre cancerous polyps.  Colon cancer is one of the cancers that it greatly increased with this syndrome (60 to 80 percent) but not everyone who has this will get a cancer.  Just bigger odds.  Kaleena is totally right about it being used as a tool for better diagnosing symptoms and doctors looking at symptoms more closely. 

    I would definitely do the test.  Forewarned is forearmed. And if you don't have it then you can breathe a sign of relief.

    Stef

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #5
    I have not but I have an

    I have not but I have an anuual colonscopy (DUE to colitis) who's counting-but so far i have had  25 of them.

     

    I have never heard of the testing you spesak of..

     

    Denise

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #6
    disneyfan2008 said:

    I have not but I have an

    I have not but I have an anuual colonscopy (DUE to colitis) who's counting-but so far i have had  25 of them.

     

    I have never heard of the testing you spesak of..

     

    Denise

    I wasn't tested

    I had both breast and uterine cancers - at the same time.  I think the reason I wasn't tested is because of my lack of family history, and that I wasn't diagnosed until I was age 62.  If I'd been younger and/or had a family history, that might raise a red flag, but I didn't.  The woman who had her hysterectomy immediately before me (she was a.m., I was p.m.) has Lynch syndrome.  Endometrial cancer was her first cancer and they obviously tested her for the syndrome based on something.  She is probably 15-20 years younger than me and I don't know anything about her family history.  I do know they keep a close eye on her.  She has regular colonoscopies and has had a grade 1 cancer removed already.  If you're being tested for BRCA, they're testing for some reason.  I think it might be a good idea to test for Lynch if they recommend it, because if they catch these cancers early, they can be successfully treated.  If you test positive, you will want them to do all the screening necessary and if you test negative, then it won't be necessary and this is a good thing.

    Suzanne

     

  • Maxiecat
    Maxiecat Member Posts: 544 Member
    #7
    I am awaiting my test results

    I am awaiting my test results for Lynch Syndrome as well as several of the other genetic tests.  They did complete the testing on the 5 genes associated with BC....and they were all negative.

     

    I was tested for Lynch Syndrome and other genes because DCIS is my 2nd cancer - I had stage IIIB Signet Ring of the colon/appendix in 2012.  I have been through 2 surgeries and 6 months of Folfox for chemo.  I was just strating to enjoy NED...and was nearing 3 years from diagnosis.  They discovered the DCIS in March - my oncologist had me get the genetic testing - thankfully the tests came back negative for the breast cancer genes.... we are still waiting to get results back on everything else.  I have seen 1 surgeon already, but my next appointment is tomorrow w/a breast surgeon.

     

    Alex

  • corey50
    corey50 Member Posts: 111
    #8
    Maxiecat said:

    I am awaiting my test results

    I am awaiting my test results for Lynch Syndrome as well as several of the other genetic tests.  They did complete the testing on the 5 genes associated with BC....and they were all negative.

     

    I was tested for Lynch Syndrome and other genes because DCIS is my 2nd cancer - I had stage IIIB Signet Ring of the colon/appendix in 2012.  I have been through 2 surgeries and 6 months of Folfox for chemo.  I was just strating to enjoy NED...and was nearing 3 years from diagnosis.  They discovered the DCIS in March - my oncologist had me get the genetic testing - thankfully the tests came back negative for the breast cancer genes.... we are still waiting to get results back on everything else.  I have seen 1 surgeon already, but my next appointment is tomorrow w/a breast surgeon.

     

    Alex

    Thanks for replying

    And good luck with your additional testing. Keep us posted. 

  • corey50
    corey50 Member Posts: 111
    #9
    Kaleena said:

    I had it done last year.  

    I had it done last year.   Although I am from the uterine board I wanted to reply.  i was diagnosed after a routine hysterectomy with endometrial adenocarcoinoma grade 2 stage 3 at age 45 in September of 2005.  Because of recent problems I was experiencing my new doctor thought I would be a candidate for this testing because I was under the age of 45 for this cancer and my grandfather had coliN cancer.   I then met with the genetics counselor.   The only thing the did was take the family history and then had my original slides from my initial diagnosis yo have the sample tested.   If the testing came back positive I would have also had a blood test.   However it came back negative.   It was strange though cause my sample was over 9 years old.  

     

    If if you test positive for lynch it just puts you at more risk and the doctors will look at your symptoms more if you have any.   They Also woild require more colonoscopIes.    Alsi if it is positive you could then have your family members tested to see if they carry it.   It doesn't mean you will get cancers but it is used as a tool for better diagnosing symptom.

    i hope this helps

    Kathy

    Thanks for replying

    and coming over from another board to do so. 

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #10
    corey50 said:

    Thanks for replying

    And good luck with your additional testing. Keep us posted. 

    Such a interesting 'subject' ...

    checking into this for myself ...  thyroid cancer, then breast cancer  (cervical cancer in between)

     

    Vicki Sam

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