Pms2

Just diagnosed with Lynch Syndrome (PMS2 gene) which may explain my endometrial cancer 7 years ago as I had none of the other risk factors. Anyone else here with the same gene mutation? TIA

I was diagnosed with Lynch-PMS2 the beginning of year. My doctor sent me for my first colonoscopy on June 26th. Several precancerous polyps were removed. I am schedule for the total hysterectomy with removal of both ovaries on the 5th of Sept. And from now on I have to get a colonoscopy and endoscopy every year.

Hi CassieAnn00,

I have been posting often hoping to have some "sisters" that have the Lynch MSH6 gene that can offer me support. I know that we are similar; although, if you can have one surgery...be thankful; although not sure of your age. I am 54, had DaVinci hysterectomy in May 2015, removed uterus, cervix...excessive bleeding, 60 plus day periods, anemic, dizzy.....gave me tons progesterone to try to control....was collapsing....now recently my 22 year old daughter had genetic testing, diagnosed with Lynch MSH6....then my test was positive...trying to convince my 25 year old son to be tested but that is a battle. So like you I have to get my ovaries/tubes out...was 51 at prior surgery...probably not yet in menopause, but not sure why at that age they did not recognize my risk with 6 bad colonoscopies and this terrible endometrial bleeding and hyperplasia without atypia/turning bad cells and take it all..I am crying thinking of how hard I worked to get back to some forma of normal....stomach bloat was the worst part for me....I wore maternity clothes and the support belt both a thin one from my pregnancies and the wider one from this site....was so helpful for aching stomach muscles....Now I also have to have a yearly colonoscopy; although, I was going every 2-3 years...all were bad and adding in the first endoscopy which horrifies me...told that will be every 2-5 years....I wish you luck, strength and a good recovery.....keep posting so I know how you are...I have my laparoscopic BSO on Sept, 17th.....

WestieDog

Westiedog, I hope you don't have too much anxiety about the endoscopy. I had a joint colonoscopy/endoscopy and they used monitored sedation (propofol) to knock me out. Can they use that for you? It's also what I had for my D&C for my endometrial biopsy last month because, after a horribly painful unsuccessful attempt due to a stenotic cervix, I refused to have another one unless I was under anesthesia. I remember nothing about either procedure. Coming out of it is a breeze. I have to have another colo/endo done in early September before my hysterectomy happens, because I'm overdue and the surgeon wants it done first. I've never had general anesthesia but that's what they'll use for my hysterectomy.

CassieAnn00, I'm also in the Twin Cities - how did your Lynch diagnosis come about? I've got the MSH6 Lynch mutation, found after my mom had endometrial cancer, and now my endo biopsy found a precancerous condition. I am pretty freaked out about surgical menopause (I'm 49 but still regular periods) so I've got a call in to my regular gynecologist to hopefully go in and talk to her about how this is going to work. The surgeon said that she would give me a prescription for the patch right away, and I am totally fine with hormone replacement, but I am kind of worried after reading some of the stories here about it. Obviously there's no one-size-fits-all, but I am a control freak and so need to know all the options.

Besides the colo/endo, what other screenings are you doing? I've been diagnosed with Lynch for a few years, so I get a regular urinalysis and full-body skin screening as well. Now that I think about it, the surgeon said she was also going to use a cystoscope to look in my bladder while I'm out, since bladder cancer is one of the cancers my grandmother had. I guess there won't be any more reproductive screenings, but I'm feeling like that's kind of a small comfort right now. Hopefully afterwards I'll be glad.

Wishing you guys good health!

. My periods are very severe. Came back that my uterus was enlarged with thick walls. Cysts on both ovaries and fibroids. Also had cancerous cells in my cervix. Then I had a lump in my breast they originally thought was a cyst but after mammogram and ultrasound showing it wasn't they sent me in for a biopsy. It came back benign. My doctor then insisted I have genetic testing to test for some things. (I think it was BRA he wanted me tested for) The genetic counselor actually told me she didn't think I fit for Lynch so there really was no need in testing it since the doctor didn't request it. But she said that my insurance would cover it so it didn't hurt to test it anyways. After results he sent me in for colonoscopy and endoscopy. They removed several polyps that were precancerous. My doctor actually personally called me and told me he was grateful I tested for the Lynch because we dodged a bullet. If I had not then I would have not had colonoscopy until I was in my 50's and the polyps would have been cancer by then.

Yes, a great thing for sure that they tested for Lynch.

It is quite a conundrum - even now, if they hadn't sent my mother's tumor for testing when she had endo cancer, I still would not meet the guidelines for genetic screening for Lynch. My mom didn't have her cancer until her late 60s, and, although her mom had both bladder and colon cancers, it was also at a later point in life. Easily mistaken for just luck of the draw for older adults.

The guidelines don't seem to account for a lot of the unknowns in people's medical histories. Like - my grandma had a hysterectomy at a relatively young age, so who knows if she might have developed endometrial or ovarian cancer before her other cancers? My mom's two brothers died young without ever developing cancer - one in his 40s, the other in his 50s - so we have no idea if they had Lynch. I think there is a push to move toward universal testing of colon and endometrial tumors, and I have to think that would pick up a lot of Lynch that would otherwise go undetected.

CassieAnn00,
Dodging the bullet is the key....no one in their right mine should wait until 50, honestly. At 40, I had bleeding from the rectum....sent to emergency room. Doctors examined me and said had I had children...I said yes...they said I had hemorrhoids. I then decided to go have an examination with a gastroenterologist. He suggested that the true defining exam would be to have a colonoscopy and I was terrified. I did just what he said and he removed precancerous polyps....I was then given the three year schedule and each time more was removed. Then one time I had a larger growth an adenoma at the rectum...along with the many precancerous polyps....and so the growths were removed...then it was suggested I have another exam right after my DaVinci hysterectomy removing my uterus and cervix and that time wow, just one polyp so my doc said go five years and I said....no! It just was pretty clear because that was not time enough for things to grow and he realized if you time it from the last very bad one...I should go ahead and have another procedure....spaced out by probably 3 years from the very bad and two/maybe 1 1/2 from the very bad procedure....and then I had yet another colonoscopy and more polyps and during the course of all this low and behold my father at 87 became ill with colon cancer...his doctor left a small polyp, said it was too small to remove and it became cancer and in a year he was gone. I pressed my doctor to keep going with more colonoscopies...I am glad I was aggressive and a worrier because now the puzzle is together and I have Lynch/MSH6 along with my daughter, 22 and again no clue on my son, 25.
Also glad when my mom said in menopause you bleed heavy, I did not listen.....Hemorrhaging all over your bathroom/as I am told/like a crime scene is not normal and again I pushed for attention....again my puzzle is complete and in terms of health I will never stop being proactive to get the care I need and the knowledge as well. I am glad you have your puzzle together and wish you all the luck and strength to get past your obstacles as well....

Warm hugs...Westiedog

CassieAnn00---so think I confused my story, but point being the colonoscopy with one small polyp was like a year past the bad one and too soon...the next that I forced about a year and a half later was riddled with polyps.....I have had the six, going on my seventh with my first endoscopy.....

As I have mentioned I also have scans of my abdomen....had some pain at one time and discovered eleven benign tumors/hemangiomas on my liver....run a sono yearly which shows if they have gotten larger...hoping that this covers my risk to my liver from Lynch......not sure of the many other ways to monitor Lynch yet, but I am on the East Coast near DC and have reached out to neighbors that are in Gynecological research as well as some working at NIH, National Institute of Health...if I find valuable information I will share this with all....including Jloc20!!!!

Westiedog

Ahhh ladies, I'm super glad my dr referred me to this site. I am a 31 year old with Lynch, PCOS and fibroids. They want to do my hysterectomy In January 2019.They have advised me that surgical menopause at my age will be extreme and are unsure of whether I should be using HRT because of the gene and family history. Anybody have this experience?

Wow- 31 is young. So sorry you have to go through this at your age.

I'm 49 but not in menopause yet. I've got an appointment next week to talk to my gynecologist about hormone options, and I will post anything of interest that she tells me. Reading some of the experiences on the forums here have been a little concerning, but then when I google "good hysterectomy experiences", I read about women that have had no major issues. A good friend of mine had a preventive hysterectomy/BSO after having breast cancer, and she said menopause wasn't fun, but she would categorize it more as an inconvenience than traumatic. She was in her early 40s at the time, so still older than you, but far from menopausal at that time. So hopefully that will be the case for us!