Lynch syndrome/ stage 3 colon cancer

Hi Dave,
Sorry to hear about
Hi Dave,

Sorry to hear about your condition. I am a caregiver to my mom, stage 3c colon cancer, now with distant (rib) and local recurrence. Technically, she is stage 4 now.

I lurk a lot on the colon boards. Cancer has a way of taking ooverf your entire life and I can be obsessive! Anyways, I have found that the colon club has a number of Lynch survivors, so they might be able to help you over there. Good luck.

HNPCC/Lynch
Hi, Dave -

My first post back on the board in a couple years...

First, introduction: I was Dx with Lynch/CRC back in 2001. I had a right hemicolectomy and 6 months of 5FU & Lukovorin. I have been NED since. My wife also has Lynch and Dx with CRC back in 2006. She has been NED - save one serious scare - since.

There are, in my opinion, a couple of very important things to know about HNPCC:

1. Yeah, it is known to recur. It often recurs in digestive or reproductive organs (my mom who also has Lynch has fought the dragon 4 times. My mother-in-law who has Lynch has fought the dragon 5 times). The fact that it MAY come back isn't a reason to crawl into a shell - rather, it's a reason to subscribe to a robust surveillance regime. The AMA recommends a colonoscopy and endoscopy every one to two years. The Journal of the American Medical Association published an excellent article on it a few years back and I will be happy to e-mail you a .pdf of the file if you e-mail me at: Robert.T.Hendrickson@uscg.mil

2. I will tell you it has been my experience and that of my wife, Katie, that doctors - even oncologists - seem to be fairly ignorant of Lynch/HNPCC. One of the reasons I have that JAMA article is to provide it to my primary caregiver whenever I move.

3. Yes... whenever I move. And yes, my e-mail is a US Coast Guard e-mail address. Lynch/HNPCC doesn't mean you have to stop living. It means you need to be out there enjoying life and doing whatever you are passionate about. You are not limited at all.

4. Having been part of the National Institute of Health/National Cancer Institute genetic study of Lynch, and having had 10 years to think about it, I strongly recommend against genetic testing. Have your children - and their children, if they've tested positive for the gene - simply follow the same robust surveillance program I mentioned above. No need to do genetic testing to find results out that will depress you and that won't change anything in your life. I can tell you horror stories about members of my family who had the genetic testing, tried to take drastic preventive steps (we talked my 20-something cousin out of having a prophylactic hysterectomy. She has subsequently had three beautiful kids and has not tested positive for any cancer yet. My wife's uncle has the gene and is a healthy 76 years old who has never had cancer.)

Anyway, drop a line if you want more info. Katie ("USAKat" on CSN) and I have a wealth of info that we'd be happy to share.

Be well.

- SpongeBob

spongebob said:

HNPCC/Lynch
Hi, Dave -

My first post back on the board in a couple years...

First, introduction: I was Dx with Lynch/CRC back in 2001. I had a right hemicolectomy and 6 months of 5FU & Lukovorin. I have been NED since. My wife also has Lynch and Dx with CRC back in 2006. She has been NED - save one serious scare - since.

There are, in my opinion, a couple of very important things to know about HNPCC:

1. Yeah, it is known to recur. It often recurs in digestive or reproductive organs (my mom who also has Lynch has fought the dragon 4 times. My mother-in-law who has Lynch has fought the dragon 5 times). The fact that it MAY come back isn't a reason to crawl into a shell - rather, it's a reason to subscribe to a robust surveillance regime. The AMA recommends a colonoscopy and endoscopy every one to two years. The Journal of the American Medical Association published an excellent article on it a few years back and I will be happy to e-mail you a .pdf of the file if you e-mail me at: Robert.T.Hendrickson@uscg.mil

2. I will tell you it has been my experience and that of my wife, Katie, that doctors - even oncologists - seem to be fairly ignorant of Lynch/HNPCC. One of the reasons I have that JAMA article is to provide it to my primary caregiver whenever I move.

3. Yes... whenever I move. And yes, my e-mail is a US Coast Guard e-mail address. Lynch/HNPCC doesn't mean you have to stop living. It means you need to be out there enjoying life and doing whatever you are passionate about. You are not limited at all.

4. Having been part of the National Institute of Health/National Cancer Institute genetic study of Lynch, and having had 10 years to think about it, I strongly recommend against genetic testing. Have your children - and their children, if they've tested positive for the gene - simply follow the same robust surveillance program I mentioned above. No need to do genetic testing to find results out that will depress you and that won't change anything in your life. I can tell you horror stories about members of my family who had the genetic testing, tried to take drastic preventive steps (we talked my 20-something cousin out of having a prophylactic hysterectomy. She has subsequently had three beautiful kids and has not tested positive for any cancer yet. My wife's uncle has the gene and is a healthy 76 years old who has never had cancer.)

Anyway, drop a line if you want more info. Katie ("USAKat" on CSN) and I have a wealth of info that we'd be happy to share.

Be well.

- SpongeBob

Get Genetically Tested! It Saves Lives!
I have Lynch syndrome and was diagnosed with colorectal cancer, Stage 3 (c) in 2007. It is metastasized into my lymph nodes.

My family history was classic. My father sustained a myriad of Lynch cancer before dying in 1997. His only sibling had colorectal cancers. My granfather and four of his six siblings died of cancers.

I have one brother and sister. Both have been diagnosed with Lynch syndrome and both have had cancers. My brother has had colorectal cancer. It was discovered at Stage 1 and he did not receive a colectomy. Every year, during his colonoscopies, polyps are removed and cancers thwarted.

My sister initially chose not to receive genetic testing. Four months ago, she was diagnosed with colorectal cancer and a tumor the size of a baseball. Additionally, she was diagnosed with endometrial cancer AND breast cancer. You can bet she got genetic testing and the test was positive, as well. In fact, the breast tumors were tested and IHC results indicated they had the characteristics for Lynch syndrome. Now, we will also be monitored annually for breast cancers, so they can be detected early and we can live.

We STRONGLY endorse genetic testing. If two parents have Lynch syndrome, the result can be a biallelic mutation for the children, who are sometimes born with brain tumors and with other serious conditions. Many don't live to birth and are lucky to ever reach adulthood, contracting devastating cancers.

Since my diagnosis, I have undergone annual testing and a tumor was found in my gallbladder. It was removed. My brothers colon tumors are removed every year...we know our risk and changed our diet and level of activity. We have bene public about our diagnosis and nobody in our family has been discriminated against.

In fact, we have MORE opportunities because of our Lynch syndrome diagnosis than most individuals with sporadic cancers. Our cancers are found early and we have a much better opportunity to live.

The standard protocol for tests is more than an annual colonoscopy and endoscopy. Some insurances will not pay for these unless there is a diagnosis of Lynch syndrome. Women need to have testing for women's cancers annually. There needs to be an endometrial sampling, a CA-125 and a pelvic ultrasound. Guidelines also include surveillance for bladder cancer. Dependent upon whether a risk involves Muir Torre (a subset of Lynch syndrome which incurs skin cancers) a dermatological scan may be necessary. And there may be a need for surveillance testing for brain cancers. (Turcot Syndrome, a subset of Lynch syndrome.) As well, prostate examinations need to be completed and for those who may be at high risk for breast cancer, personalized monitoring programs.

Lynch syndrome is evolving and new technology and findings are found every day. So, get diagnosed if at risk, get those annual screenings and protect your families and yourselves. For more information, visit www.lynchcancers.com

For more information, visit www.lynchcancers.com, www.lynchcancers.org

Live well and stay well! Warm regards, Linda