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Lynch Syndrome?

Posts: 8
Joined: Sep 2006

I'm looking for other cancer patients that have been diagnosed with HNPCC (Lynch Syndrome).

Posts: 1560
Joined: May 2006

Hi Wendy,

See this post http://www.acscsn.org/Forum/Discussion/thread/view?msgid=111944&msgrid=3

Best Wishes, Eleonora

Posts: 8
Joined: Sep 2006

Thanks, Eleonora, for the link. I was dx last year with colon cancer and found out it was due to Lynch Syndrome. Just wondering how other people are dealing with the news. I've been reading through several of the messages on this site and I have to say most people have a very good outlook. I wish I would have visited this site a year ago while I was going through chemo.

KathiM's picture
Posts: 8077
Joined: Aug 2005

Never tested. 2 primary site cancers, 19 months. Rectal and breast. No need to test...
Hugs, Kathi

JADot's picture
Posts: 720
Joined: Jan 2006

Greetings from the Singapore aiport! I have an extremem version of Lynch Syndrome, meaning that I have all the symptoms but they can't prove it w/ genetic testing.

The conventional wisdowm about lynch syndrome is that it gives you better prognosis with the colon cancer, however it predisposes you for ovarian and uterine cancers. There's an article in this Jan's New England Journal of Medicine on this. Please talk to your doc about this and see how to be vigilent on all fronts.


alta29's picture
Posts: 435
Joined: Mar 2005


usakat's picture
Posts: 625
Joined: Jul 2006

Hello Wendy,
Welcome and check out the following web site:


cindybob's picture
Posts: 61
Joined: Aug 2004

I thought that I responded to this back in September (2008)because that was when I dx with lynch syndrome.

I am 42-wow-still can't believe that, but anyway, colon cancer at 36.
I hit that 5 year mark thinking "whoo hoo!" I'm done with cancer, I am no more at risk than the next guy/gal whatever.

My mom died at 43 from breast cancer so, I had the BRAC I & II and that was negative. I was tested for that right after the colon cancer. Then we got this new test. I actually took it 2 years ago, maybe less, but the lab tossed the test because of paperwork problems and communication issues. Then again in July or August 2008 I was tested for HCCNP (I think that's what it is called, I might have missed a letter or two.) And that, of course, was positive. I wasn't worried at first, but then I did some research and found out that that my happy 5 year mark didn't mean much anymore. I was still more likely to get cancer again. And the numbers on some websites are downright scary. So, I had my moment to totally freak out. (There is a lot going on in my life, so this was a good time to fall apart.) After an hour or two of FEAR, I did some more thinking and research.

My oncologist was glad that we had the dx. That way he could remain or become hyper vigilent about detecting cancer.

I have two beautiful kids and my doctor has already told me not to have more children, (The Tamoxifen-that I had to take after my cancer means that I also have to be on Birth Control.) I am finished with the Tamoxifen, and with giving birth to kids anyway, so tomorrow I will have a "total radical hysterectomy."

Most people are very supportive and tell me that I will feel SO MUCH BETTER after the surgery. I suffer from migraines and this may help. I also like not having another period. But of course, I would rather never have another surgery. Of course, I would rather have surgery than cancer!

So, that's my story, how are you? What are you doing if anything about your diagnosis?

lisa42's picture
Posts: 3661
Joined: Jul 2008


I found your posting very interesting and I wish you all the best during your hysterectomy tomorrow. My comment is about migraine headaches. I had sufferered from migraines most of my adult life- they were very debilitating- I'd have 2-3 a month, which would always last 3 days each. The worst one of each month would always be at the same time as my periods.
Interestingly, I had my last period the very first chemo session of Folfox- it was a bad one & it was probably one of the worst migraines I ever had. Well, that was the last period I ever had (it's now been 15 months since then), and guess what? No more migraines either! I always knew they had to be hormone related. So, at the very least, I hope that your migraines will disappear with the hysterectomy!

Best wishes to you,

cindybob's picture
Posts: 61
Joined: Aug 2004

Hi Everyone!
I have had my easiest surgery to date and that is saying something. But I had my "total radical hysterectomy," and while I had a horrible migraine within a week of the surgery, i can already see a difference. I have had two episodes since the surgery which I had right before Thanksgiving. But my migraines have always been as you said, totally debilitating. The worst was as I mentioned first, about a week after surgery. I was devestated but my OB/Gyn surgeon thinks that it was steriod hormones from the stress of surgery. Since then, I take the the hormone therapy and as long as I don't miss a dose or timing of the dose, I am okay. I don't even have that risidual pain or fear that comes with chronic migraines. I did have a second round of migraines but nothing like the marathon pain with no relief that i experienced before. I still need my script for Imitrex, but I am really hopeful that eventually that will go away as well. I have honestly never felt better.

As for the Lynch Syndrome dx. I feel better knowing. I was really worried about ovarian cancer since it is so hard to dx. So, no more ovaries is one less worry. And, with the lynch syndrome label, I know that no one is going to let me slip through the cracks. My "hypochondria," is legitimized. Once the Beast is a part of your life it is so hard to not worry any time something doesn't feel right. Now, I put that worry on my doctors. They want to see me more often, screen for things, etc. And I no longer worry about them missing something. I am confident that now things will not get far before it is caught. And maybe I will never ever have anything to worry about again. (well, except the kids will eventually get tested, but that is still at least a few years from now.)

Just wanted to say, if any of you are considering the test, my personal experience has been mostly positive. I feel better than ever. I am SO HAPPY with the hysterectomy. So ladies, I recommend it. It has not had a chance to sink in that I won't have any more periods. My teenage daughter has enough for the both of us anyway!

Anyway, love, hugs and kisses to all.
Cindy Bob

VickiCO's picture
Posts: 934
Joined: Oct 2008

The blood was drawn and the geneticist is researching. There is a LOT of uterine cancer in my family (I, myself, had stage 1 uterine cancer AND cervical cancer when I was 43) as well as some colon cancer. I am not being tested for me - I already know I have had several cancers, although the colon is the most aggressive. What we are looking for is a marker for my daughter and grandchildren. It's all so new and surreal to me. Wish we could have a crystal ball!


cindybob's picture
Posts: 61
Joined: Aug 2004

Hi Vicki!
Do you have your results yet? How are your cancers at this point? Are you still in treatment? The test is the closest to a crystal ball that we get at this point, I guess. You seem to have all of the criteria for Lynch Syndrome. I am so sorry for so many battles. My most positive thought is that if they have identified the exact problem, a cure really has to be the next step.

I know how scary it is to think that we need this done for our children, but once the genetic mutation is absent, it dies, it does not skip a generation.

My goal right now is to get my sister tested. She doesn't have to do the full scope, we know exactly what to look for with her, which is much cheaper than my test. But I am most glad to know about me in order to have more ammunition to get her tested. She is still in denial although we have lost several family members to this already.

Let us know how it goes Vicki!
Cindy Bob

spongebob's picture
Posts: 2599
Joined: Apr 2003

Hi, Cindy Bob & everyone else -

The Lynch Syndrome string always gets my attention! My wife (USAKat) and I are both HNPCC positive. I tease her that we're very distant cousins.

We were both tested; she privately and I through the National Institutes of Health/National Cancer Institute. in fact, my entire family - mom and all of her siblings, my sister, all of the children of my aunts & uncles who came up positive.

That was in 2001. Since that time I have had an opportunity to do a lot of research and a lot of thinking. When people ask me about genetic testing, I always recommend against it. Here's why:

1. Biggest concern is for the discovery of a "pre-existing medical condition" that may impact insurability

2. The distinct possibility of a false negative - unless you do the expensive genetic test for all of the various mutations that cause HNPCC.

3. The probability that colon cancer may develop even if you don't have Lynch Syndrome

4. The impact that a positive result has on the person and the family (guilt, over-reaction [my 30-year old cousin who came up positive wanted to have a complete hystorectomy. We talked her down from that and she has subsequently had two beautiful kids], depression, etc.)

5. And lastly, the fact that just because you have the gene doesn't mean that it will ever "turn-on". My wife's uncle is in his mid-70s, has the gene, but has never had colon cancer.

Just my two-cents-worth and some input from the devil's advocate.

Be well & Happy New Year!

- SpongeBob

VickiCO's picture
Posts: 934
Joined: Oct 2008

Cindy Bob

I did get my results and I am negative for Lynch Syndrome. Huge relief for my family. You are right, it cannot skip over me to the next generation.

I finished chemo/radiation last Monday and am suffering a lot this week with burns, internal and external. I am so debilitated that I can hardly get out of bed, but I think it will start to turn around now. I see my surgeon on the 12th and we go from there. I am more worried about the next round of chemo that the surgery! It really knocked me on my butt this time, and it was only 5FU...

Thanks, Vicki

wercancerfree's picture
Posts: 7
Joined: Oct 2010

My husband has had many surgeries because of Lynch syndrome. He has had 2 colon surgeries, 1 small intestine surgery, 1 urinary surgery to remove a tumor, skin cancer, thyroid issues, you name it he has had it. His family health history is being studied by Creighton University because of the mutated gene his family carrys. He has 6 children and half of them also carry this gene. Today he is cancer free.

Posts: 2
Joined: Feb 2017

I am 57 and just completed 5/6 rounds of chemo after having a hysterectomy with 2 independent clear cell cancers (1 uterine, 1 ovarian) and I had a bad reaction on the 5th chemo treatment. Then right before chemo #4 I was told that the uterine tumor suggested Lynch Syndrom. I did the genetic testing and of course I found out I have a problem with the MHL1 which places me at a high risk for colon cancer. I am super angry as I had no idea this was even in our family.

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