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All TopicsForum: High Risk for Breast Cancer → Topic: Lynch Syndrome

Topic: Lynch Syndrome

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Jun 15, 2008 02:02PM

flash wrote:

Anyone else out there with the genetic "Lynch Syndrome?"

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Jun 15, 2008 03:00PM pabbie wrote:

I'de like to learn more about it. I was tested for brac1&2 which were negative.

I think they are testing me further for Lynch Syndrome. I have not googled it yet but if you could shed some light, that would be great. Thanks & Take care.

Dx 2/6/2008, IDC, 2cm, Stage II, Grade 2, 2/19 nodes, ER+/PR+, HER2-Dx 1/23/2014, IDC, Stage I, Grade 1, 0/0 nodes, ER+/PR+, HER2-Surgery 01/23/2014 Mastectomy (Right)Hormonal Therapy 02/05/2014 Femara
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Jun 15, 2008 03:15PM leaf wrote:

Here's what the Mayo Clinic has to say about it.
http://www.mayoclinic.com/health/lynch-syndrome/DS00669

If you're going through hell, keep going-Winston Churchill

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen
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Jun 15, 2008 04:03PM mradf wrote:

Thanks for the link, leaf.  I will check it out.  I tested negative for the BRCA gene mutations, but the genetic counselor talked to me about Lynch Syndrome based on the family history.  This is the first conversation that I'm seeing about it.

Maria

ALL WILL BE WELL. - Julian of Norwich

Dx 11/19/2007, DCIS, 4cm, Stage 0, Grade 3, 0/7 nodes, ER+/PR+
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Jun 16, 2008 11:04AM tam1953 wrote:

I do not have Lynch Syndrome, but Dr. Henry lyncy (who the gene was name after) tested me for brca. He's a very nice man.

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Jun 18, 2008 08:45PM murph11 wrote:

Is lynch syndrome along the lines of LiFraumini Syndrome?  What classifies it as lynch.

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Jun 18, 2008 09:39PM leaf wrote:

No, Lynch is different from Li Fraumeni. Li Fraumeni is a mutation at a different gene than Lynch.

www.emedicine.com/ped/byname/l...
www.emedicine.com/ped/TOPIC130...
Li Fraumeni *is* associated with breast cancer.


According to wikipedia (I know dangerous) en.wikipedia.org/wiki/Heredita...
I don't know if Lynch is associated with breast cancer. I don't think so.

If you're going through hell, keep going-Winston Churchill

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen
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Jun 29, 2008 12:06AM, edited Jun 29, 2008 12:07AM by csp

Flash I just had genetic study done and along with testing for BRAC they want to test me

for Lynch Syndrome too.

Carrie

Surgery Lumpectomy (Right)Radiation Therapy 10/01/2010 External
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Jun 29, 2008 04:44AM kagaines wrote:

I hadn't heard about this one, but my BCRA test was negative and they now want to test me for the PTEN gene aka Cowdens Disease.

I don't know if I'm in the minority on this, but I was actually upset the BCRA test was negative.  I guess for me it would have been easier to deal with all this if there was some sort of reason behind it, and not just my dumb luck.

Off to read about lynch!

"The greatest glory is not in never failing, but in rising up every time we fall." - Confucius

Dx 7/8/2008, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2-
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Jul 14, 2008 09:10AM isurvivedcc wrote:

I tested positive for Lynch Sydrome in June of 2006.  My sister just passed away in May from colon cancer.  I am so glad my family was tested so that we now know our risks and can take a proactive stand against this horrible condition.  My son is 21 and has already started screenings for colon cancer.  Since we know that he has this gene mutation he should never have to go through the cancer treatments that my sister and I have.

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Jul 27, 2008 01:32AM Methusala wrote:

What is this?

BRCA 1 + and the BIG 3, triple negative.. Life is short. Pray hard with your kids.

Dx 6/2007, IDC, 3cm, Stage IIb, Grade 2, 1/38 nodes, ER-/PR-, HER2-
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Feb 27, 2009 05:09PM mommaxine wrote:

My sisters,brother, and myself were all diagnosed with Lynch Syndrome.  We had genetic testing and had the mutated gene MSH6.  My sister developed breast cancer in 2005 and had a lumpectomy and chemo.  Another form of breast cancer came back in March 2008 and she had a double mastectomy and chemo.  She tested negative for the BRCA genes.  Our brother had colon cancer and our other sister had uterine cancer.

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Feb 27, 2009 07:04PM CarynRose wrote:

I know someone who is BRCA+, also has Lynch syndrome.  She's had just about every risk reducing surgery you can imagine including having her colon removed several months ago.  If you'd like to communicate with her, feel free to email me and I can make the introduction.  carynrose at aol dot com

Caryn

Dx 6/28/2007, IDC, 2cm, Stage IV, Grade 3, 0/3 nodes, mets, ER-/PR-, HER2-
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Apr 12, 2009 11:58PM whoopsiedoodles wrote:

BUMPAROO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  

This is the genetic mutation they speculate I have.  I had Stage 0 Ovarian, Stage IIa/IIb IDC, and Stage I Colon (just diagnosed on April 6th). 

More info?  Tender?   Any of our other medical go-to ladies?  I'm itching to know more. 

"And if it turns out it's over too fast, I'll make every last moment last"

Dx 9/29/2005, IDC, 6cm+, Stage II, Grade 3, 0/7 nodes, ER-/PR-, HER2-
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Apr 13, 2009 02:01PM flash wrote:

haven't gotten a lot of info on it yet whoopsie.  still trying to get more info. sorry to hear you added the colon to the mix.

multifocal multicentric IDC, DCIS, pagets et al. - er+,pr+ her2+++, mast,chemo, ooph, hyst

Dx 10/10/2007, Paget's, Grade 3, ER+/PR+, HER2+
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Apr 13, 2009 09:51PM spikedscrubs wrote:

My father was just diagnosed with Lynch Syndrome today after many months of speculation and family discussions.  I am 24 years old and will be tested within the next month so I can know if I need to begin all of the preventative screenings as well.  I would LOVE a support system regardless of my results and am so pleased to have found other people who even know what this syndrome is.  I will answer any questions with what I already know and would love if any of my concerns could also be acknowledged.

 Thank you!

Be generous: with your time, with your money, with your heart.

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Apr 14, 2009 01:02PM susan_CNY wrote:

http://www.dana-farber.org/pat/cancer/gastrointestinal/crc-calculator/default.asp

dx 4/1984 cervical /hyst 10/2002 stage 2 colon /hemi-colectomy/5FU and Leukovorin chemo 11/2003 stage 1 bc tumor 1.6 grade 3 no nodes, possible vascular invasion / lumpectomy and rads 7/2009 lumpectomy found to be benign

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Aug 20, 2009 09:39AM victoriasecret wrote:

Hi i am a fellow lynch sister ..I was diagnosed with adenocarcinoma uterine in Feb 08.My sister had stage 1 Breast ca 48, and papilary serous uterine 49,1 year apart starting with her breast dg.Mother ovarian age 42,bowel45,bowel 76ish, and finally uereter at 78.

We are all Lynch positive...

I have just been diagnosed with stage 3 lobular breast ca..was always told no link even when sis was diagnosed...had dense lumpy breasts and many scares..soo is there a link ?

This is not about me now but my daughter & nieces...my surgeon said to my daughter YOU are now high risk ...ya think ...just still plowing through mentally what I could have done to see this earlier ..mammos & ultra sounds yearly...I am 49.

I have a 2nd cousin in Mtl. and she said it was linked...but do not know where she got her info I have emailed her and waiting on her info..

love

Cheryl

Dx 6/15/2009, ILC, 6cm+, Stage IIIc, Grade 2, 11/25 nodes, ER+/PR-, HER2-Surgery 07/31/2009 Mastectomy (Both); Lymph Node Removal (Left); Prophylactic Mastectomy (Right)Chemotherapy 08/31/2009 Adriamycin, Cytoxan, TaxolRadiation Therapy 01/01/2010 External
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Feb 17, 2010 10:35PM weety wrote:

Is Lynch syndrome the same as HNPCC syndrome? 

Dx 7/17/2009, IDC, <1cm, Stage Ib, Grade 3, 0/1 nodes, ER+/PR-, HER2+Targeted Therapy HerceptinHormonal Therapy FemaraSurgery Mastectomy (Left)Radiation Therapy ExternalChemotherapy carboplatin, TaxotereSurgery 04/19/2010 Prophylactic Ovary Removal (Both)Surgery 04/10/2013 Prophylactic Mastectomy (Right)
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Feb 18, 2010 12:40PM victoriasecret wrote:

weety ...yes

ml C

Dx 6/15/2009, ILC, 6cm+, Stage IIIc, Grade 2, 11/25 nodes, ER+/PR-, HER2-Surgery 07/31/2009 Mastectomy (Both); Lymph Node Removal (Left); Prophylactic Mastectomy (Right)Chemotherapy 08/31/2009 Adriamycin, Cytoxan, TaxolRadiation Therapy 01/01/2010 External
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Feb 18, 2010 12:54PM lbrewer wrote:

i also test positive for lynch (hnpcc)  My mother's father died of colon, my two brothers died of colon cancer and my mom had it but is still alive.  I have a colonoscopy every two yeARS.  Since it causes endometrial (60% chance) and ovarian (10%) I had a complete hysterecomy at the time of my reconstruction.  I am 55 and done with babies!   There is a link on clinicaltrials.gov for a researcher at MD ANderson who is looking for women with hnpcc.

I had a robotic hysterectomy which I would HIGHLY reccommend to women looking for that option.  I have 2 scars that look like bug biltes and would never know I had it all removed.

Anyone interested in either the trials or the surgery, feel free to pm me.  YOu might check out hystersisters.

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Mar 2, 2010 10:58AM melly wrote:

I was diagnosed with IDC in 2007.  We have a strong family history of colon cancer...I even had a second cousin who was diagnosed with breast cancer and her daughter now has colon cancer...I am now seeing a genetic consultant to determine if this could be be lynch syndrome...

Dx 2/28/2008, IDC, 3cm, Stage IIa, Grade 3, 0/3 nodes, ER-/PR+, HER2-
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Jul 22, 2010 09:12AM springchicken wrote:

My Mother was diagnosed with colon cancer at 52, Dad died of Prostate at 88. I have read about Lynch Syndorme online and still cannot get most of my doctors and the Insurance Company to see that I should be tested for both Lynch and BRACA 1 and 2. They keep saying I am not high risk since I cannot list anyone in my family that died of Breast Cancer or Ovarian Cancer. We have several relatives on both sides of my family that have had colon cancer, colitis, or other problemes with their colon. Is anyone having difficulty with insurance coverage and the medical community recognizing Lynch Syndrome? I guess I can print off information I have read but fear I will be labeled the "Problem" patient that reads too much online. They hate it when patients read things online!!! I feel like they put a mark on your chart like that episode in Seinfeld when Elaine got a note in her medical chart for being a "problem" patient!

Dx 11/6/2009, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Jul 22, 2010 11:05AM flash wrote:

spring chick- i would work with a geneticist to see if you need to be tested.  They are the ones who can do the best at determining if the testing is appropriate.  Lynch isn't just colon, it's abdominal so it has a diff pattern than some others.  good luck.

multifocal multicentric IDC, DCIS, pagets et al. - er+,pr+ her2+++, mast,chemo, ooph, hyst

Dx 10/10/2007, Paget's, Grade 3, ER+/PR+, HER2+
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Dec 3, 2010 12:42AM Carolyn18 wrote:

In 2009 because lots my relatives have been getting bowel cancer-I was tested to see if I had a faulty gene. Many of my relatives have now been tested and over half of us have Lynch Syndrome.   I am 64 - so in 2009 I  had risk reduction surgery in the form of a full hysterectomy. I have Gastroscopys and Colonoscopys every year. I  am waiting at the moment to find out if I have passed this faulty gene onto my children.   I have not been tested for the Breast cancer gene.

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Dec 3, 2010 02:35PM weety wrote:

I have no family history of breast/ovarian cancer, but since I was young (38) at diagnosis, my genetic counselor did agree (and the insurance as well) to test for BRCA 1 and 2 (negative for both) but I couldn't talk them into testing for Lynch.  I still think this is the more likely culprit, in my case, since there is a lot of colon cancer on mom's side of the family, but they just won't do it.  Both the counselor and geneticist said breast cancer is not one of the cancers seen in lynch syndrome.  Most of my reading and research seems to state otherwise, though. . .   So, I'm in the same boat as you. For now, I'm letting it go, but I might start insisting on the testing again in a few years.  Maybe they will change their minds, or maybe there will be a different counselor/geneticist with different views.  I DID make sure I got my colonoscopy at 40, though.

Dx 7/17/2009, IDC, <1cm, Stage Ib, Grade 3, 0/1 nodes, ER+/PR-, HER2+Targeted Therapy HerceptinHormonal Therapy FemaraSurgery Mastectomy (Left)Radiation Therapy ExternalChemotherapy carboplatin, TaxotereSurgery 04/19/2010 Prophylactic Ovary Removal (Both)Surgery 04/10/2013 Prophylactic Mastectomy (Right)
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Dec 3, 2010 05:46PM, edited Aug 20, 2013 06:19AM by eileen1955

I'm glad this topic came up b/c one breast surgeon mentioned it to me; but the genetic counselor did not agree that I fit the criteria.    My father had colon cancer twice in his life; at 40 and then again at 62 which led to his death.    

I was told it is usually found among Western Europeans and I am 100% Irish tho I live in the US with all the environmental factors of living near big cities.    So who's to say if it's genetics or environment? I don't know.    

No one else in my family has had breast or colon cancer.   But then I think of the ones who died early due to other causes.  Might they have developed colon or breast or ovarian/uterine cancer?

This thread will prompt me to make an appt with a new top-notch oncologist who helped me make the decision to have preventative bilateral mastectomy.  She scoffed at the Lynch Syndrome connection b/c she said breast and colon are not part of the Lynch syndrome complex.  

Dx 10/28/2003, IDC, <1cm, Stage Ia, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Mar 23, 2011 10:37AM MaxsMeme wrote:

My grandfather and mother died of colon cancer in their 30's.  I tested positive for Lynch - MLH1 gene mutation.  I was diagnosed with colon cancer at 30 and I have now been diagnosed with Invasive ductal carcinoma age 55.  My gastroentorlogist requested tests on the tumor and the path report came back positive for Lynch.  My son also tested positive for Lynch but my daughter is negative.  My oncologist isn't sure if my daughter is at an increased risk for breast cancer since he is negative for Lynch.  Any thoughts?

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Apr 15, 2011 09:30AM OHnewsroom wrote:

Hello,
I would like to add few comments here regarding the Lynch syndrome. It strongly predisposes people who have this inherited defect to develop colorectal cancer as well as several other types of cancer such as stomach, ovary and kidney.

Thanks
OHne wsroom
http://www.temperature-indicators.co.uk/

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Jan 3, 2012 02:02AM bulldogjudi wrote:

I have Lynch Syndrome.  Everyone who has been tested in my family has tested positive -- My Aunt just learned that her breast cancer is a Lynch type tumor.

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Jan 4, 2012 09:26AM cynsaw84 wrote:

My older sister was supposed to be tested for lynch syndrom after they removed a large polyp at 28 following a gi bleed, we have a large family history on both sides of cancer with most of our paternal grandmothers siblings passing from cancer, she has not completed testing yet due to cost. Should I push for it at my appointment thursday when they check my breast lump?

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