Lynch Syndrome and Preemptive Hysterectomy

JADot · March 2006

I have Lynch Syndrome, a big name for some genetic mutations which cause colon cancer in people under or around 40s, with multiple, large right-side tumors - which I fit the bill entirely. A little more research turned up that Lynch Syndrome patients are also prone to ovarian and uterus cancers, not metastasis but different primes.

My gyn-oncologist just showed me an article in the New England Journal of Medicine (Jan 2006 issue) which cites 60% chance for cancer in the uterus, 12% in ovaries for women with Lynch Syndrome. Because of the non-trivial odds, they are recommending preemptive hysterectomy. Ouch was my first reaction. I am having my CA125 tested now. Sweting it out while waiting for the results. And will be extensively scanned next week. The anxiety is killing me, a hell of a lot more than FOLFOX.

I would be very grateful to hear from anyone who may have some data and/or experience with this.

Thanks Ahead.

JADot

terril · March 2006

Hello JADot!
I had a hysto two years ago. This is how they found the cancer. As far as the surgery, it was not bad. A little sore, but within three weeks, I was able to drive and do lots of things. Really, after a week, I was feeling great. My incision is a bikini-type. Yeah, like I am going to wear a bikini anytime soon!!!!
I hope the tests are alll negative!! Because of this syndrome, they must look at the ramifications. I think you docs are up on things!!! Good luck and keep up posted. Again, positive vibes and thoughts are headed your way!!! Terri

jerseysue · March 2006

I was tested for Lynch because I have lots of kids and I wanted to make sure if I had it that I drilled into them the importance of getting checked by 20 years old. I have a 18 year old and then 4 younger kids. I do know that there is a 50/50 chance of you passing the "mutated" gene onto your kids. Also if you have siblings they should also be tested to make sure they don't have it. There isn't much more I know about it but I did a lot of reading on the internet about it. I also had a hysterectomy that is how they found my colon cancer as well. I was getting a few hot flashes for a while but when I started eating right and trying to stay alkinline I really hadn't had any. I don't use any hormone replacement of any kind but my ob did me some cream to use about twice a week. Stay strong it's just another "thing" to overcome! Thoughts are with you. Sue

foxy · March 2006

Hi, am I dreaming or was there a funny response to your post? When I saw your post all i could think of was my right sided colon cancer, right ovary removal right partial mastectomy, removal of growth right side of cervix, and I thought far out I have a 34 year old daughter due to have our first grandchild later this month, what have I passed onto her? Did you have genetic testing to come to the Lynch syndrome dx? Please let me know, I know my colon cancer was not due to polops, thanks Virginia.

JADot · March 2006

foxy said:
Hi, am I dreaming or was there a funny response to your post? When I saw your post all i could think of was my right sided colon cancer, right ovary removal right partial mastectomy, removal of growth right side of cervix, and I thought far out I have a 34 year old daughter due to have our first grandchild later this month, what have I passed onto her? Did you have genetic testing to come to the Lynch syndrome dx? Please let me know, I know my colon cancer was not due to polops, thanks Virginia.

Hi Terri, Sue and Virginia:

Thanks for your posts. It's good to know that you've all been there, done that and here to prove that it's just another "thing".

To answer your question Virginia - they tested me for Lynch Syndrome because I was deemed too young to have colon cancer at 39. They tested my tumor tissue and it showed that I was missing the mLH1 enzyme - one of the telltale signs of Lynch Syndrome. Further discussion with the genetics people at Stanford convinced me that I needed to get my blood tested to see whether the tumore was a one-off or I really am genetically special. This will be done in about a week.

I have no siblings and no kids so I am testing purely to find out what other surprises I might have in store for myself.

Virginia - I think you're passing along your "right" sided fighting spirit on to your children and grandchildren. All they need to do is to stay vigilant and get tested often. If you want to get a conclusive test, then ask for a blood test and ask to be screen for Lynch Syndrome. From there, the genetics people can advise you on who else in your family should be tested. Funny you mentioned that your tumor was "not due to polops". Well, you see the other name for Lynch Syndrome is HNPCC, or hereditary nonpolyposis colon cancer - no polyps. I'll keep you posted on what else I learn.

Speaking of funny - I am the only person in my family with a hereditary disease! You know, sometimes you just don't want to be that special

cindybob · September 2008

Lynch Syndrome-and just some venting-nerves and all
Hi.
I did not know that there was a name for this. (Lynch Syndrome or the NPCC??? whatever the acronym was) I had my first (hopefully my only) bout with colon cancer when I was 36. I am finally 5 years out. I still have a problem with anemia, but other than that, blood tests and colonoscopies have come back NORMAL. That was until I did the mutated gene test in June. I am positive and I am going in TODAY to discuss what to do next. I have three kids and my main fear is that I have passed this to them. I also have a sister that has never had a colonoscopy and she is a year older than I am. SHE still won't go and she's knows that I am positive. But if I have passed this to my kids, ugh! I just hope that I haven't. Anyway, problem compounds itself because my mom passed away when she was 43 from breast cancer. I will be 42 in November so that hangs in my head. I am negative for the BRAC I & II, but I still think that a hysterectomy is in my near future. I am happy in a way because I have been suffering through dibilatating migraines since childhood and NOTHING works to cure them. I am told that a hysterectomy might be the answer for those as well. I go to a pain doc and neurologist for the migraines and it's just chemical after chemical being dumped into me to prevent these monsters and since I was a child there have been no cures. I am still in bed for a few days a month with migraine pain. So, this hysterectomy might be my blessing. I can't help but be terribly nervous though. I am very anxiety ridden about the whole thing. I was feeling so relieved at being 5 years (almost NED) The bad blood thing kinda prevents a complete NED. Have any of you ladies regretted the hysto? any other words of advice? Any other warnings that I should remember?

And just to put it out there, I KNOW that many of you that have been able to completely change your lifestyles to fit for better nutrition and NO MORE poisons. I hear you, I KNOW that I need to do it, but I am a single mom of 3 and I work as a high school teacher so I have hundreds of kids that I am "mom" to, I do not have the MONEY or the time to do things right. Please do not remind me that I am my own worst enemy. I suffer enough guilt over eating processed food as it is. But truley unless you teach you do not understand the time committment. I am at school for 12 hours a day normally, sometimes more, sometimes less. I have my own kids to spend time with, help with homework, take to activities, I have a house-that's falling apart, two pets, a 1995 ford taurus that's dying a slow painful death and I can't afford "good-for-us food," I buy what I can. I have lots of helpful friends, but I just don't want to be told AGAIN that this is my fault and that I am killing myself eating breads and sugars, etc. I'm sorry, I really do BELEIVE that nutrition is a cure, but I support my family on a public school teacher salary and to put that number out there. That's only a little over 40K a year. There is no way to eat "right" with no money and no time. We eat a lot of noodles and sandwiches in this house. And processed FAST food like hot pockets. Thank you for letting me vent. I get told so much what I am doing wrong, I just need a little encouragement instead of a lecture. And I know, from being on here, that SUPPORT is what all of you do. It's at work that I get the food preaching. I hear things like "I do it, I grow my own vegetables and that's all we eat." I do well to mow the yard once in a while. A garden is a lovely idea but impossible for me. Thank you all again for listening it helps just to punch the letters on my keyboard.
I really appreciate all of you on these message boards, it was wonderful to do a search and find that many of you have done the whole "colon cancer as a female cancer for under 40-50-60 females with the disease. I don't know, maybe it's always a "female cancer" for women. I feel like I keep writing the wrong thing, so I am shutting up. Thank you again, everyone.

usakat · September 2008

cindybob said:
Lynch Syndrome-and just some venting-nerves and all
Hi.
I did not know that there was a name for this. (Lynch Syndrome or the NPCC??? whatever the acronym was) I had my first (hopefully my only) bout with colon cancer when I was 36. I am finally 5 years out. I still have a problem with anemia, but other than that, blood tests and colonoscopies have come back NORMAL. That was until I did the mutated gene test in June. I am positive and I am going in TODAY to discuss what to do next. I have three kids and my main fear is that I have passed this to them. I also have a sister that has never had a colonoscopy and she is a year older than I am. SHE still won't go and she's knows that I am positive. But if I have passed this to my kids, ugh! I just hope that I haven't. Anyway, problem compounds itself because my mom passed away when she was 43 from breast cancer. I will be 42 in November so that hangs in my head. I am negative for the BRAC I & II, but I still think that a hysterectomy is in my near future. I am happy in a way because I have been suffering through dibilatating migraines since childhood and NOTHING works to cure them. I am told that a hysterectomy might be the answer for those as well. I go to a pain doc and neurologist for the migraines and it's just chemical after chemical being dumped into me to prevent these monsters and since I was a child there have been no cures. I am still in bed for a few days a month with migraine pain. So, this hysterectomy might be my blessing. I can't help but be terribly nervous though. I am very anxiety ridden about the whole thing. I was feeling so relieved at being 5 years (almost NED) The bad blood thing kinda prevents a complete NED. Have any of you ladies regretted the hysto? any other words of advice? Any other warnings that I should remember?

And just to put it out there, I KNOW that many of you that have been able to completely change your lifestyles to fit for better nutrition and NO MORE poisons. I hear you, I KNOW that I need to do it, but I am a single mom of 3 and I work as a high school teacher so I have hundreds of kids that I am "mom" to, I do not have the MONEY or the time to do things right. Please do not remind me that I am my own worst enemy. I suffer enough guilt over eating processed food as it is. But truley unless you teach you do not understand the time committment. I am at school for 12 hours a day normally, sometimes more, sometimes less. I have my own kids to spend time with, help with homework, take to activities, I have a house-that's falling apart, two pets, a 1995 ford taurus that's dying a slow painful death and I can't afford "good-for-us food," I buy what I can. I have lots of helpful friends, but I just don't want to be told AGAIN that this is my fault and that I am killing myself eating breads and sugars, etc. I'm sorry, I really do BELEIVE that nutrition is a cure, but I support my family on a public school teacher salary and to put that number out there. That's only a little over 40K a year. There is no way to eat "right" with no money and no time. We eat a lot of noodles and sandwiches in this house. And processed FAST food like hot pockets. Thank you for letting me vent. I get told so much what I am doing wrong, I just need a little encouragement instead of a lecture. And I know, from being on here, that SUPPORT is what all of you do. It's at work that I get the food preaching. I hear things like "I do it, I grow my own vegetables and that's all we eat." I do well to mow the yard once in a while. A garden is a lovely idea but impossible for me. Thank you all again for listening it helps just to punch the letters on my keyboard.
I really appreciate all of you on these message boards, it was wonderful to do a search and find that many of you have done the whole "colon cancer as a female cancer for under 40-50-60 females with the disease. I don't know, maybe it's always a "female cancer" for women. I feel like I keep writing the wrong thing, so I am shutting up. Thank you again, everyone.

No Lecture From Me....
Hello Cindy,

I understand your stress - I have many family members who are public school teachers - brother, sister, SIL, mom (who was a single mother). I also understand your concern about your health and your desire to just live your life without judgment from others, especially those who have never had cancer. No one else walks in your shoes, even those with similar circumstances...do your best to ignore the holier-than-thou folks. Ignore them, or give them your electric bill and then give them the right to comment...

Anyway, perhaps you should speak with your doctors about your concern about the possibility of your cancer being genetic - HNPCC (Hereditary Non-Polyposis Colon Cancer) AKA Lynch Syndrome. Check out the following for more information:
http://en.wikipedia.org/wiki/Hereditary_nonpolyposis_colorectal_cancer

A good source of information is a Journal of American Medical Association article that you can share with your doctors. It provides information about HNPCC, and most importantly, the screening and treatment guidelines for HNPCC positive patients. See the attached (click on "Begin Manual Download":
http://jama.ama-assn.org/cgi/reprint/296/12/1507

Share the article with your sister and encourage her to speak with her doctor about a colonoscopy. Let her know that a colonoscopy is no big deal, is pain free, and now with the pill prep that is available, it's easy. A colonoscopy is far better than colon cancer!

As for me, I had genetic testing when I was diagnosed with Stage III colon cancer in 2006 at age 42, and tested positive for HNPCC.

Last month I was misdiagnosed with stomach cancer, and am now being monitored every three months with EGD and PET/CT for abnormal cells in my stomach (Pseudo-signet ring cells) to make sure I'm not developing pre-cancer or cancer of the stomach and/or small intestine.

When I was diagnosed in 2006 with the colon cancer my doctors found three "large cystic structures" in my uterus and cysts on my right ovary that have since not resolved themselves. Endometriosis was also found during surgery and has worsened the past two years. I recently requested an endometrial biopsy to confirm I am cancer free in the uterus. After reviewing my records and my recent PET/CT my gyno onc suggested to forgo the biopsy and have a complete hysterectomy (ovaries included). The tissue will be tested for cancer after surgery.

I'm not going to have children and with the increased risk that Ying (JaDot) noted for HNPCC patients, I decided to have it done. I'm scheduled for surgery on October 16.

I will have what is called a da Vinci hysterectomy. It's very cool and very leading edge minimally invasive robotic surgery. Check it out at: http://davincisurgery.com/procedures/gynecologic/uterine/davinci_hysterectomy.aspx

After speaking with several doctors and careful study of HNPCC, and considering my extensive family history of HNPCC syndrome cancers, including endometrial cancer, I am very confident I am making the right choice. I'm glad and very blessed that my husband, a fellow HNPCC patient, is very supportive.

Again, don't let the know-it-alls get you down...ignore them and live your life. For medical advice talk to your doctor and do your own research. If you have any questions or would like to chat, drop me a note here at CSN. I'm happy to help.

Many blessings for peace and good health!
Katie
http://katiescancer.blogspot.com/

jsabol · September 2008

Sorry you have to deal with this
but good to hear from you; I hope you continue to get the info you need to make the best decisions for you. DON'T let the anxiety do you in; you've come too far to let this bump take that away. Hope you and hubby weather this; keep us posted. Regards from Boston, Judy

kmygil · September 2008

Preemptive hysterectomy
Hi.

My family has HNPCC. Mother, sister, cousins, aunt all had endometrial cancer. These same people plus some more also had colon cancer. One year after my colon dx, I got endometrial cancer. The upshot? My sisters have had preemptive hysterectomies which their oncological gynecologists told them was the absolute right thing to do. The odds are so high that you will get the endometrial cancer if you have this gene, that as soon as you are done having children, you should get one. Personally, I have directed my family to stop breeding. No more bad genes!!!! They call me a nazi. I call it common sense, but it's a very debatable issue that has no right answers.

Other cancers to watch out for with HNPCC are stomach, bladder, kidney, liver and some brain cancers. There are a couple of others, but one at a time is enough for me:) It's a highly personal and sometimes very emotional choice, but I think it's a sensible one.

My older sister is the only one of us siblings to have a child. I am grateful I did not, but my niece is such a joy that I can't imagine her NOT being here, genetics and all. So I guess I'm a hypocrite, huh?

The right answer for you will come to you. Your answer is not necessarily someone else's answer, but it will be the one for you.

Hugs,
Kirsten

cindybob · November 2008

kmygil said:
Preemptive hysterectomy
Hi.

My family has HNPCC. Mother, sister, cousins, aunt all had endometrial cancer. These same people plus some more also had colon cancer. One year after my colon dx, I got endometrial cancer. The upshot? My sisters have had preemptive hysterectomies which their oncological gynecologists told them was the absolute right thing to do. The odds are so high that you will get the endometrial cancer if you have this gene, that as soon as you are done having children, you should get one. Personally, I have directed my family to stop breeding. No more bad genes!!!! They call me a nazi. I call it common sense, but it's a very debatable issue that has no right answers.

Other cancers to watch out for with HNPCC are stomach, bladder, kidney, liver and some brain cancers. There are a couple of others, but one at a time is enough for me:) It's a highly personal and sometimes very emotional choice, but I think it's a sensible one.

My older sister is the only one of us siblings to have a child. I am grateful I did not, but my niece is such a joy that I can't imagine her NOT being here, genetics and all. So I guess I'm a hypocrite, huh?

The right answer for you will come to you. Your answer is not necessarily someone else's answer, but it will be the one for you.

Hugs,
Kirsten

surgery tomorrow!
Hi.
Thank you so much everyone for your support and putting up with my ranting a few months ago. I am having my preemptive "total radical" hysterectomy tomorrow morning. So, if anyone is the praying sort, think of me in the morning.

I am really happy with my decision. So, I just want to make sure I get all the "good drugs" for recovery and not CHEMO!!!

Love to all,
Cindy Bob

VickiCO · November 2008

cindybob said:
surgery tomorrow!
Hi.
Thank you so much everyone for your support and putting up with my ranting a few months ago. I am having my preemptive "total radical" hysterectomy tomorrow morning. So, if anyone is the praying sort, think of me in the morning.

I am really happy with my decision. So, I just want to make sure I get all the "good drugs" for recovery and not CHEMO!!!

Love to all,
Cindy Bob

Prayers your way
Cindy Bob . we are thinking of you. major cyber hugs as well...

Vicki

CherylHutch · November 2008

cindybob said:
Lynch Syndrome-and just some venting-nerves and all
Hi.
I did not know that there was a name for this. (Lynch Syndrome or the NPCC??? whatever the acronym was) I had my first (hopefully my only) bout with colon cancer when I was 36. I am finally 5 years out. I still have a problem with anemia, but other than that, blood tests and colonoscopies have come back NORMAL. That was until I did the mutated gene test in June. I am positive and I am going in TODAY to discuss what to do next. I have three kids and my main fear is that I have passed this to them. I also have a sister that has never had a colonoscopy and she is a year older than I am. SHE still won't go and she's knows that I am positive. But if I have passed this to my kids, ugh! I just hope that I haven't. Anyway, problem compounds itself because my mom passed away when she was 43 from breast cancer. I will be 42 in November so that hangs in my head. I am negative for the BRAC I & II, but I still think that a hysterectomy is in my near future. I am happy in a way because I have been suffering through dibilatating migraines since childhood and NOTHING works to cure them. I am told that a hysterectomy might be the answer for those as well. I go to a pain doc and neurologist for the migraines and it's just chemical after chemical being dumped into me to prevent these monsters and since I was a child there have been no cures. I am still in bed for a few days a month with migraine pain. So, this hysterectomy might be my blessing. I can't help but be terribly nervous though. I am very anxiety ridden about the whole thing. I was feeling so relieved at being 5 years (almost NED) The bad blood thing kinda prevents a complete NED. Have any of you ladies regretted the hysto? any other words of advice? Any other warnings that I should remember?

And just to put it out there, I KNOW that many of you that have been able to completely change your lifestyles to fit for better nutrition and NO MORE poisons. I hear you, I KNOW that I need to do it, but I am a single mom of 3 and I work as a high school teacher so I have hundreds of kids that I am "mom" to, I do not have the MONEY or the time to do things right. Please do not remind me that I am my own worst enemy. I suffer enough guilt over eating processed food as it is. But truley unless you teach you do not understand the time committment. I am at school for 12 hours a day normally, sometimes more, sometimes less. I have my own kids to spend time with, help with homework, take to activities, I have a house-that's falling apart, two pets, a 1995 ford taurus that's dying a slow painful death and I can't afford "good-for-us food," I buy what I can. I have lots of helpful friends, but I just don't want to be told AGAIN that this is my fault and that I am killing myself eating breads and sugars, etc. I'm sorry, I really do BELEIVE that nutrition is a cure, but I support my family on a public school teacher salary and to put that number out there. That's only a little over 40K a year. There is no way to eat "right" with no money and no time. We eat a lot of noodles and sandwiches in this house. And processed FAST food like hot pockets. Thank you for letting me vent. I get told so much what I am doing wrong, I just need a little encouragement instead of a lecture. And I know, from being on here, that SUPPORT is what all of you do. It's at work that I get the food preaching. I hear things like "I do it, I grow my own vegetables and that's all we eat." I do well to mow the yard once in a while. A garden is a lovely idea but impossible for me. Thank you all again for listening it helps just to punch the letters on my keyboard.
I really appreciate all of you on these message boards, it was wonderful to do a search and find that many of you have done the whole "colon cancer as a female cancer for under 40-50-60 females with the disease. I don't know, maybe it's always a "female cancer" for women. I feel like I keep writing the wrong thing, so I am shutting up. Thank you again, everyone.

No lecture here!
Hey Cindy,

No lectures here!! We all know eating healthy, well-balanced meals with lots of leafy green veggies and colourful veggies is the way to go, but the magic key of having a diet like that is also being able to maintain it... for the rest of one's life and I am sorry, I just don't see that happening with the majority of people, whether they have cancer or not. It's like saying a 5'6" woman should maintain the ideal weight of 125-130 lbs. Sure... it is totally ideal... but how many 5'6" women do you know that actually do and can maintain that weight? It's all numbers.

No one is arguing that eating healthy isn't the way to go... but there are a lot of other factors that come into play to maintain a lifestyle like that. Finances are one thing, work, free hours, "me" time, "children" time, blah, blah, blah.

What you have to do is do what works for you... and if you can occasionally make a fresh veggie/fruit choice, then more power to you. Hahaha... I would LOVE to grow my own garden of fresh veggies... but I live in the heart of the city which is all apartment buildings, and no I don't even have a balcony

Anywho... shed yourself of the guilt. Actually, if anything the stress of blaming yourself for everything and the guilt you carry around with you is probably doing more harm than what you are or aren't eating. Kind of hard to shed stress when your life is all about working and supporting your kids on your own. But if you can shed some of that stress, then more power to you!!

I had a hysterectomy 7 years ago when they thought I had endometrial cancer... turns out the lab was totally wrong and I ended up having the hysterectomy and didn't need it. Oh well, at least I don't have to worry about getting those female cancers now

I had the traditional abdominal hysterectomy and I was back on my feet in no time... so I don't recall it being particularly bad or painful or any of that. It's not that big of a deal in that sense, although you do have to take care post surgery and make sure you take care of yourself and don't lift anything heavy for a good 6 weeks after surgery.

Good luck!!

Huggggggs,

Cheryl

Lynch Syndrome and Preemptive Hysterectomy

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