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Lynch Syndrome anyone?

elainegint
Posts: 11
Joined: Jul 2019

This is my two week surgery-versary. I had a complete laporascopic hysterectomy.  I'm doing okay now, but had TERRIBLE, EXCRUTIATING pain the first few days.  And the anesthesia made me so dizzy that I couldn't stand or walk for about 18 hours so stayed overnight in the hospital. When I got home, I saw that the hospital doctors prescribed pain killers that were contraindicated with my blood pressure medications and sleep apnea, so I had only Tylenol, which wasn't nearly enough.

But I made it through and am doing okay now. Seeing surgeon for follow-up next week, but the good news is that he said that I shouldn't need any chemo or radiation treatments because it was 50% penetration and totally confined to the uterus. 

The surprising bad news, however, is that I have a genetic mutation called Lynch Syndrome that makes me much more likely to get certain cancers. I will need to see a geneticist and will know more about what this means re: monitoring and testing after I see the surgeon. 

But I was wondering if anyone else knows anything about Lynch Syndrome. After looking it up online, my family history does not seem to match the profile.

 

 

 

cmb's picture
cmb
Posts: 552
Joined: Jan 2018

I'm glad to hear that you're recovering from the surgery and that you shouldn't need any additional treatment.

My family history did not match the typical profile for Lynch Syndrome, but the pathology on my tumor after surgery strongly indicated this.

I then had genetic testing to confirm that I do have Lynch Syndrome. After this was confirmed, my siblings also had genetic testing. My two sisters are clear but my brother also has Lynch Syndrome.

While my parents both had cancer, neither was typical for Lynch Syndrome. My mother had cervical cancer – not considered a hereditary cancer. My father had colon cancer, but wasn't diagnosed until he was in his 80s – long after colon cancer influenced by Lynch Syndrome usually shows up. I don't know of any other cancer in my near relatives.

My insurer did balk at paying for the genetic testing since I didn't fit the usual profile for Lynch Syndrome, but I appealed and they finally paid.

I now go for colonoscopies/endoscopies every two years.

elainegint
Posts: 11
Joined: Jul 2019

Sounds very similar to my situation except that although my mother died of lung cancer, my father did not have any cancer. Lumg cancer runs in my family --- grandparents, uncles--- but not the cancers considered part of Lynch SYndrome.

Thank you for your very helpful information, especially about the genetic testing.  I am on Medicare so I don't know if that will be a problem or not. 

The idea of having colonoscopies and especially endoscopies every two years is not a pleasant one, but I guess it is better than the alternative.

I'll know more after I meet with the oncologist and geneticist.

Forherself's picture
Forherself
Posts: 438
Joined: Jan 2019

My jobs was making sure the patients in our Family Care office were up to date on colonoscopies.   The new scopes, and the anesthesia or medication to make you unaware of the procedure is so good now.  Even drinking the prep has improved.   I was worried I would starve if i didnt eat for a day, but for some reason i was not hungry.  I had popsicles and jello. One of the things I tried to emphasize too is that colonoscopies PREVENT colon cancer.  They are not just a screening tool.   There are two kinds of polyps.  One of them can progress to cancer, one type doesn't.   The gastroenterologist removes the polyps.   A biopsy will tell you what kind they are.  But by removing the polyps they prevent the progression to bowel cancer with all the treatments and prognosis.   The only people in our office who developed bowel cancer were the ones who decided not to have a colonoscopy.  I had one patient come back to me and say "Sue thank you for saving my life". He had about 40 precancer polyps.   He was told he was. lucky he had his colonoscopy when he did.  I had been talking to him for 2 years about it, and he said "I'll have one so you quit bugging me".   Please have colonoscopies.   The procedure is really quite easy to tolerate.   

Forherself's picture
Forherself
Posts: 438
Joined: Jan 2019

I am so happy for you no treatment is recommended.   After I was diagnosed with cancer, I asked my cousins about cancer in our family.  I had two boy cousins that died of cancer but I'm ashamed to say I did not pay attention to what kind.  After asking my girl cousin, who has had breast cancer,  I told her I had uterine cancer, she said "Oh Mom had that".  I never knew!  I changed my family history with my surgical oncologist.   Sometimes people don't talk about a cancer diagnosis.  And now I think we are all getting colonoscopies so don't get bowel cancer.   We need to talk about adenomatous polyps instead of bowel cancer.   I have not been tested for Lynch.   My mother had a hysterectomy at age 42 so who knows if she would have deveolped uterine cancer.  I am the only one in my immediate family with a cancer diagnosis.

 

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