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PMS2 Lynch Mutation PMS2 Lynch Mutation

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  #1  
Unread 08-22-2015, 05:42 PM
PMS2 Lynch Mutation

Hi


I'm pms2 +, having hysterectomy on October 1st. Keeping ovaries for hopefully 10 more yrs ( but we will have to wait & see as they are extremely polycystic)

I'm just wondering if anyone knows anything more about pms2.... It seems to be the "best" lynch mutation! & yet I've read about people getting cancers early.

Would appreciate any info
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  #2  
Unread 08-22-2015, 06:42 PM
Re: PMS2 Lynch Mutation

Hi Octobersurgery,

I don't know if any of our members also has posted about the PMS2 mutation, but you are right, statistically, that mutation leads to a lower incidence of cancer than some of the other mutations. Here is an Article from the Journal of Clinical Oncology about PMS-2. Hopefully it can give you some more information. Is your doctor an gynecological oncologist? If not, I suggest you speak to one. I also suggest you talk to a Genetic Counselorbefore you have your surgery if you haven't already done so. They are great at helping you evaluate your cancer risks and various options. Here is a link to our Gyn Genetics articles. Several of them address Lynch mutations. I congratulate you on being brave enough to to do your research and being proactive in your healthcare decisions.
  #3  
Unread 01-18-2016, 02:53 AM
Re: PMS2 Lynch Mutation

I also have PMS2 lynch mutation and i'm scheduled for total hysterectomy next week. I have had various tests which have all been normal and now wonder at age 47 if it is necessary to remove everything? Feeling very anxious. Would appreciate any info and wonder how the Octobersurgery lady got on?
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  #4  
Unread 01-18-2016, 03:07 AM
PMS2 Lynch Mutation

Hi!
I kept ovaries as I'm only 31, will have them removed between 40-45. Surgery was very tough, don't under estimate the recovery time like I did! I had keyhole & thought I would be recovered after 6 wks. Maybe I was just unlucky but got a few different infections which prob set me back. Had to have surgery last wk to remove a small umbilical hernia caused by the surgery, starting to feel better now. Just make sure to have plenty of help, I've 2 & 3 yr old kids & was very lucky to have family support. If I could change one thing... I would've definitely gotten a cleaner once or twice a wk. It's very frustrating not being able to do anything! And if anyone offers help ask them to drop you in dinner! I still find cooking / light cleaning quite painful nearly 4 months in! Best of luck with it. I'm sure it'll go more smoothly than mine. My aunt had the surgery a month before me & was flying around after 3-4 wks! So hopefully you'll be like her!
  #5  
Unread 01-18-2016, 03:40 AM
PMS2 Lynch Mutation

  Quote:
Originally Posted by Octobersurgery View Post
Hi!
I kept ovaries as I'm only 31, will have them removed between 40-45. Surgery was very tough, don't under estimate the recovery time like I did! I had keyhole & thought I would be recovered after 6 wks. Maybe I was just unlucky but got a few different infections which prob set me back. Had to have surgery last wk to remove a small umbilical hernia caused by the surgery, starting to feel better now. Just make sure to have plenty of help, I've 2 & 3 yr old kids & was very lucky to have family support. If I could change one thing... I would've definitely gotten a cleaner once or twice a wk. It's very frustrating not being able to do anything! And if anyone offers help ask them to drop you in dinner! I still find cooking / light cleaning quite painful nearly 4 months in! Best of luck with it. I'm sure it'll go more smoothly than mine. My aunt had the surgery a month before me & was flying around after 3-4 wks! So hopefully you'll be like her!
I'm really sorry to hear that.. I have 4 children and really not looking forward to the surgery or having a surgical menopause.. in fact I'm thinking of cancelling. I know there is a big endometrial risk but not ovarian or cervical but my surgeon wants to take everything.. I hope you feel better soon
  #6  
Unread 01-18-2016, 04:21 PM
PMS2 Lynch Mutation

  Quote:
Originally Posted by Clare S View Post
I'm really sorry to hear that.. I have 4 children and really not looking forward to the surgery or having a surgical menopause.. in fact I'm thinking of cancelling. I know there is a big endometrial risk but not ovarian or cervical but my surgeon wants to take everything.. I hope you feel better soon
Defo don't cancel!!!!
Even with all the set backs I'm still so glad that I did it!
I just prob went into it expecting similar recovery to c section, it's not! It's tough. But can't be tougher than cancer treatment. Has to be done unfortunately for us, but we're lucky to be able to take preventive measures
  #7  
Unread 01-18-2016, 06:21 PM
PMS2 Lynch Mutation

  Quote:
Originally Posted by Clare S View Post
I'm really sorry to hear that.. I have 4 children and really not looking forward to the surgery or having a surgical menopause.. in fact I'm thinking of cancelling. I know there is a big endometrial risk but not ovarian or cervical but my surgeon wants to take everything.. I hope you feel better soon
If you are having second thoughts, my strong recommendation is to get a second opinion from another gyn/ onc and a genetic counselor.
  #8  
Unread 07-30-2018, 09:21 AM
Re: PMS2 Lynch Mutation

I am only 36. I also have Lynch with PMS2 mutation. I have talked to several doctors. And also genetic counseling. I had a colonoscopy and endoscopy June 26th. Several precancerous polyps were removed.
My doctors and my self all feel have total hysterectomy with removal of both ovaries is best for me.
I do not want several years from now and have them removed and I do not want to risk the chance of ovarian cancer.
  #9  
Unread 07-30-2018, 11:54 PM
Re: PMS2 Lynch Mutation

I am 54, posted all over the site searching for anyone with the Lynch MSH6 mutation. I had the Da Vinci hysterectomy at 51 in 5/2017. My 22 year old daughter was tested, diagnosed with this mutation. Then I tested positive. Still trying to have my 25 year old son tested. I was the perfect candidate for Lynch, 6 colonoscopies, all with polyps, endometrial hyperplasia w/out atypia....assume not great cells....excessive bleeding, 60 day periods or more, anemic and my surgeon left my ovaries/tubes...now they are adamant that it must come out. I am having the laparoscopic BSO on 9/17/2018. I would suggest anyone speak in detail with their surgeon....about what to remove. Understand that most are younger than I am so perhaps good to keep ovaries/tubes....at my age I am so upset that I have to relive this surgery. No it is not really outpatient. I stayed in the hospital...Anesthesia did not work well for me. I could not wake up....felt nauseous.....recovery was not bad, but an ongoing process.....Good luck....MSH6 is frightening. If anyone has this please reply to me.....Westiedog
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