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Lynch Syndrome Lynch Syndrome

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Unread 08-01-2012, 09:08 AM
Lynch Syndrome

Hi everyone,

My name is Sara and I'm brand new here. I just found out that I tested positive for a MSH6 gene mutation at the beginning of June. I was really surprised, though I shouldn't have been. My maternal grandfather died from colon cancer at 45, my mother was diagnosed with endometrial cancer only 4 months shy of her 50th birthday. She was tested and they found the mutation so naturally I needed to be tested too. I dragged my feet on testing..I'm not sure why. I was convinced that I couldn't possibly have the same defect since I'm young (nearly 32), healthy, and look more like my dad (stupid excuse, I know). I guess I was just in denial. Anyways, I tested positive and in a whirl I was set up with a genetic counselor in Boston and a GI dr (1st colonoscopy/endoscopy last week - all normal!! Yay!! . I was scheduled to have an ablation 8/6 but have since changed it to a TAH. My genetic counselor said that even though my risk of ovarian cancer is also higher it would be a benefit to keep them for a bit longer and just have them removed closer to menopause. So here we are. I'm 5 days out and a nervous wreck. I was already having some issues, prolonged periods, very painful (including my last period of my life that *just* ended, I swear it was the MOST painful ever) hence the original ablation. My dr seems to think I have some adhesions going on due to my having 3 c-sections so that's why I'm going the abdominal route. I know this could potentially save my life so I'm (mostly) confident that I'm making the right decision. I have this irrational fear that they are going to open me up and find the worst. I guess it's worth mentioning that I had a biopsy of my lining done a few months ago and it was fine, I also have a history of ovarian cysts, a few of which have ruptured and at the moment I have a large complex cyst on my right ovary). I don't even know where I'm going with this exactly, my mind is all over the place. : / I guess I just wanted to throw my story and fears out to the universe and see if I could connect with anyone else that has been in a similar situation.
Thanks so much for reading!
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Unread 08-01-2012, 09:01 PM
Re: Lynch Syndrome

Hi Sara,

There are a number of women on this site who have had lynch syndrome, and I hope they will come and share some of their stories with you soon. You can also put lynch syndrome in the search box on this site and should come up with lots of information. I haven't seen her on this site lately, but there is a 'sister' called Will2Win. You might want to try and contact her via a private message ( put her name in the search line as well) and you can find her posts and responses to others. She is extremely knowledgable.

I also knew someone who had lynch syndrome, and ended up with a few related cancers, but is still going strong 20 or so years later. She is watched closely.

Thank goodness you were tested. But, I am sure it was upsetting for you to find out. Make sure you learn as much as you can about lynch syndrome.

Unread 08-15-2012, 05:30 PM
Re: Lynch Syndrome

Thank you very much Diane!

I didn't even notice the search feature..I did use it and found out more information, which was great! Hearing personal stories and point of views from others helps even more than the information that you can acquire from a genetic counselor.

Thank you again!
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Unread 08-15-2012, 10:34 PM
Re: Lynch Syndrome

I had the same fear you did. I did have a cancer dx prior to surgery. I dreamed one night that when I woke up doc said they didn't do the surgery jist closed me back up. It was so bad he didn't see any point in wasting OR time. Lol. The mind can do some crazy things. Well what really happened is right before they out me under I asked gyn/onc to take pictures. I told him I just didn't think it was fair he got to see parts of me that I didn't. He laughed but he took my pics. I was so convinced it was gonna be some rotted black and reeking alien in my body. Lol. My pics show a uterus a little bigger than should be it along with all the other parts are just as pinlk and they can be. Hang in there.
Unread 08-28-2012, 12:38 AM
Re: Lynch Syndrome

I'm 32 and was diagnosed with uterine cancer/lynch syndrome in June. My husband and I were trying to have a baby and I mentioned it to my gyn (who also happens to be a fertility specialist). He scheduled a fertility workup in which he discovered a small 2 cm fibroid. We scheduled a robotic myomectomy and he had to cut my uterus in half to get it out. But he said the good news was that I could start trying to get pregnant in about 3 months. Well a week later, the pathology came back - endometrial adenocarsinoma. They also did genetic testing and discovered the lynch syndrome connection. 3 days later I was in for body scans to check for spreading, and two and half weeks after my first surgery I was back in the hospital having a hysterectomy. I opted to keep my ovaries because my husband and I have been offered the surrogate route (I have amazing friends and family). During surgery my oncologist did find spreading that didn't show up on the scans. My right ovary was removed as well as some of the outer lining of my intestine. I am halfway through chemo right now and will do an egg retrieval once it is over. After that I will have 3 rounds of radiation and have the remaining ovary removed. I think the scariest parts for me are that lynch syndrome leads to higher risk for several cancers and I don't want to go through this again; the genetic factor - I have 2 sisters in the process of being tested; and not being a mother. Good luck with your surgery and I think you are very brave to be proactive about your diagnosis.
Unread 08-28-2012, 03:35 AM
Re: Lynch Syndrome

Hi ,

I too have been tested as having Lynch Syndrome and as a result had a TAH on July 25th 2012 and am now 5 weeks post -op.

My Mum died of Ovarian cancer aged 56 and cancer of the reproductive system has been rampant (but caught) throughout my mother's family. All her sisters have also had a TAH and many of my 1st cousins too.

My drs advised me to wait until I was over 40 to have my TAH and that is what I did. The need to have it done was hastened by my having abnormal smear tests in the last year and the identification of pitting in my cervix that may lead to problems long term. I took a second opinion about the TAH and took a deep breath and decided to go ahead.

I should emphaise that at no time have I had any problems with any part of my reproductive system and the drs told me after surgery that all the tissues were completely healthy (thankfully) but that does not mean they would stay that way long term.

I am glad I did it but am also older than you and my family is complete. It still was not an easy decision and I don't think it has fully sunk in but I really felt I had no choice. I also have 3 daughters and they will need to be screened too.

Good luck with your treatment and feel free to PM me if you have any questions or want to vent

Unread 08-28-2012, 12:01 PM
Re: Lynch Syndrome

Paxton, isn't it crazy what we can imagine, which is usually 1,000x worse than reality?! Anxiety is great huh? lol

Murmouse, I wish I could give you a
huge hug!! You mentioned that I am brave but you are incredibly brave!! I am so, so sorry that you are going through this. I can understand being afraid since there are so many cancers connected with Lynch, it is scary. I guess the flip side is that we can be screened more often to catch things before they get out of hand. I just want you to know that you are in my prayers. Huge hugs!!

Aprilknit, thank you for your encouragement! I am 3 weeks post op right now. Had a scary bout where I was readmitted because I had blood loss (half of what I went in with!) and needed a few transfusions. The drs still don't know what happened since I had minimal bleeding during surgery and no internal bleeding. Of course having Lynch I think the worst. But all of my blood work this far has come back fine and I just had a clean colonoscopy. What a long recovery! Even with all of that I still feel like I made the right decision (my family is complete as well). It's just still the fear of the unknown but it's great to connect with others in the same situation. Hugs!
Unread 08-31-2012, 12:36 PM
Re: Lynch Syndrome

Hi Sara-
Welcome! I, too, have Lynch Syndrome. I was officially diagnosed in early 2010 following uterine cancer and colon cancer, both at the age of 43. They were not spreads from one another-they were two separate, distinct tumors. My grandmother and my father both died of colon cancer so I knew I had a greater risk.

After several months of heavy bleeding I saw a gyno in early 2009, who did a uterine biopsy. It came back negative but I wanted an ablation, so he did that a month later, along with a D&C. That's when the cancer was found. I was staged 1B, grade 3 and had 25 external and two internal radition treatments.

After I healed, my sister insisted I get a colonoscopy. The only symptom of colon cancer I had was low-grade anemia, which could have been remaining from the heavy menstral bleeding. Doctor found a tumor-had half my colon removed, 54 negative lymph nodes and three rounds of chemo.

My daughter (an only child) was tested when she turned 18 and she's positive for HNPCC too.

You are so far ahead just knowing you have Lynch. I believe with all my heart it's better to know and work to prevent the cancer. My daughter will have a hysterectomy once she's done having children and will start having colonoscopies in her mid-20's. It can be scary but I refuse to let fear rule my life.

So glad you're here and posted this. There are others in the same situation who care and know exactly how you feel!
Unread 09-03-2012, 05:22 AM
Re: Lynch Syndrome

Hi Janet 1234,

I wanted to agree whole heartedly with your statement "I refuse to let fear rule my life"

Unread 09-04-2012, 07:51 AM
Re: Lynch Syndrome

Hi All

Sara - I too have the MSH6 Lynch Mutation - really surprising as I have no family history of bowel or gynaecological cancers but at the age of 41 I was diagnosed with Rectal Cancer which fortunately hadn't spread (but involved some pretty horrendous surgery and a 3 month colostomy bag). I am booked in for hysterectomy and ovaries removal in Jan 2013. Like AprilKnit, it hasn't been an easy decision but I would never forgive myself it I got endometrial or ovarian cancer and could have done something about it. At the end of the day, I guess I owe it to my two young boys to try and stay around as long as I can for them.

Like Janet, I am also glad you posted this Sara - sometimes it feels like a lonely road we are travelling but with websites like these, it is great to share experiences.

All the best

Eurekagal (from Byron Bay Australia)

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