Lynch Syndrome?

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

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.

Cheers,
Ying

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

http://www.genetichealth.com/

lisa42 said:

no more migraines
Hi,

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,
Lisa

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

cindybob said:

being tested
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!
Hugs,
Cindy Bob

AHOY!
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

Lynch Syndrome
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.