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Anyone go for genetic testing? Anyone go for genetic testing?

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Unread 12-14-2007, 07:41 AM
Anyone go for genetic testing?

Hi Ladies,

I went in for my hysterectomy on October 5 due to fibroids, heavy bleeding etc and they found out with Stage 2b grade 3 endometrial cancer. I just started RT 25 externals and 3 internals. My mother had uterine cnacer and colon cancer both past age 60, my paternal grandmother had colon cancer at about age 80, my father has ulcerative colitis.

I am waiting for the result sof my genetic testing but I went to the GI doctor yesterday an dhe said he didn't really think my cancer is genetic. Anyone out there have any experience with genetic testing?
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Unread 12-14-2007, 08:59 AM
Anyone go for genetic testing?

I went to see a genetic counseller so see if my chidren need to be screened. My understanding is that most cancers are not genetic and sometimes it is just your luck! (bad obviously!)
x x
Unread 12-15-2007, 08:59 AM
Anyone go for genetic testing?

When I had my first colonoscopy last month, I asked my specialist about links between colon cancer and endometrial cancer. He told me that there is evidence of links among endometrial, colon and breast cancer, some linked to specific genes. I do not have a medical history due to being adopted privately and genetic testing here in Ontario seems to be difficult at best. Our DD has her own menstrual issues and has done 2 cycles of a drug which suppresses hormone production to mitigate excessive pain and bleeding. She also has family history of colon, kidney and liver cancer, plus strokes and Alzheimer's, on my DH's side of the family - what a legacy to pass on! I think perhaps genetic testing can provide a base for more thoughtful medical follow-up and lifestyle adjustments.

Best wishes to you ..... Wendy
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Unread 12-15-2007, 09:34 AM
Anyone go for genetic testing?

My family had genetic testing done. The key is to look at your extended family not just your immediate family. You and your mom both having uterine cancer could be concerning but what about your mom's mom, grandmother, sisters, brothers, etc.....

If you are concerned you could see a genetic counselor. Mine was at Ohio State University but I think they are at all major cancer centers and univerisities. They will screen you and determine if you need to be tested.

If you have daughters or sisters, even if you do not have genetic testing done, I would keep an eye on gynocological cancers.

My mother in law's mom died of uterine cancer a long time ago. My mother in law now has ovarian cancer. It may be a fluke or it may not.

Most gyn/oncologists will work with the family of cancer patients to make sure they have adequate screening.

My mother in law's gyn/onc advised me to have a total hysterectomy (I had other issues also).

My side of the family has tons of breast and ovarian cancer but we tested negative for BRCA. The gyn/onc still thought it was linked.

Best of luck to you.
Unread 12-15-2007, 01:17 PM
Anyone go for genetic testing?

I went for the genetic testing, my appointment to review the results is Friday. I just thought it was odd that the GI doctor didn't think it would be genetic, and that I could wait 5 years for another colonoscopy. I understand that breast, uterine and colon cancer are linked and can be genetic. I will find out on Friday what the story is. I do not have any children so I had the testing done for me and if I test positive my niece will need to go for testing along with my brother and potentially my cousins.
Unread 12-15-2007, 08:58 PM
Anyone go for genetic testing?

I did have genetic testing done. My oncologist had my history and after recognizing my family members (both maternal grandparents) who had colon cancer at relatively young ages, suggested I get tested. I think they did both the HPCCA (I think that was the colon cancer gene defect test) and BRCA gene. It was expensive. The testing had to be pre-approved and was denied at the first go-round by my insurance company. My oncologist wrote a letter and the testing was ultimately approved with a pretty hefty co-insurance for me. I was fortunate, though, that I was able to get this done at all. Ultimately, all tests came back came back negative for any of these genetic defects.
Unread 12-15-2007, 09:49 PM
Anyone go for genetic testing?

I come from a hugh family, about 20 aunts and uncles, and no one that I know of ever had cancer. Leave it to me.

My daughter is adopted so I am wondering how do they do a genetic test. Would it just be a test on her or do they need other members of the family to check it against. We adopted her privately and have no medical history at all. Makes me wonder about my Gkids. I do know my daughter has had bad migraine headaces since she was a teen and her daughter has them also. Must be a link there.

If they do find someone at risk what do they do...just extra tests and followups?
Unread 12-16-2007, 05:54 AM
Anyone go for genetic testing?

I can understand why your doctor thought you did not have genetic (hereditary) cancer. First, all cancer has some genetic basis. The genes are mutated or damaged through birth accident (many lymphomas), lifestyle, environment, etc. Hereditary cancers are caused by genes that are mutated during the formation of a human, due to dominant mutated/damaged genes being transferred from at least one parent. ONLY 5% of the CANCER population (not total population, cancer population) have known hereditary cancer.

While I don't know much about the BRCA (breast cancer genes), I am very familiar with the colon cancer genes. I have Lynch Syndrome, or it's formal name, HNPCC, heridatary non-polycystic colon cancer.

While you have a family history of colon cancer, which should not be discounted, the markers, or possibility of having HNPCC, include the following: More than one sibling or cousin within a generation with diagnosed colon cancer before the age of 50 and/or more than one female sibling or cousin within a generation diagnosed before the age of 55 with endometrial, ovarian or bladder cancer. A sibling or cousin with multiple cancers at the same time at an early age, particularly female, are also a sign of the colon cancer genes.

The cancer has to be diagnosed ACROSS a generation or family tree (cousins and siblings within a generation), not VERTICAL on a family tree (grandparent-to parent- to child). The colon cancer heridetary cancer is also determined by EARLY cancers; people affected by any cancer past age 55 are normally thought to have many reasons to have cancer, and very little chance of having cancer due to genetic transfer at conception.

Having said this, there is a small possibility that you do have inherited cancer, but the testing is very expensive. I was tested and found to have two mutated sets of genes of the four sets of genes that are known to generate inherited colon cancer.

What does genetic testing do for treatment? When children turn 21, if Lynch Syndrome is found, they are expected to be tested for colon cancer now every two years. Female children now are armed with information to not have a gynecologist tell them in their 40s or earlier, that bloating, clotting, bleeding abnormally, and increased pelvic pain are "normal perimenopause," which is what happened to me with my first gynecologist for two years, even though the doctor was aware that I had two brothers who were diagnosed with colon cancer before age 40. A female can now, if Lynch Syndrome is confirmed in the family, ask for a prophylactic (preventive) hysterectomy when she feels the time is right.

If you are ever diagnosed with colon or female cancers, it is most likely, if you have the genes, your doctor will always recommend aggressive preventive chemotherapy. On the up side, people with HNPCC seem to have longer remissions, and a higher "cure" rate, although they are not sure why that is (is it because you have more stringent exams and care or is it because of the nature of the inherited vs. non-inherited disease?). My two brothers were both diagnosed when they were age 38. One brother never had a recurrence for 20 years, but unfortunately, recurred at 58 and died. My other brother, had a colostomy, a recurrence at 49, but is still cancer-free now for the second time at 56. I am doing very well more than two years after diagnosis.

I hope this information helps you. Please feel free to private message me if you have additional questions.
Unread 12-16-2007, 09:09 AM
Anyone go for genetic testing?

thanks for the information, they are testing me for Lynch Syndrom and I will find out the results on Friday, if the first test comes back positive there is a second test they will do and you are correct they are really expensive. I do not have kids but I wanted to know if I need to look out for colon cancer since both my mother and grandmother had it and 2 of my uncles were also diagnosed with cancer. I am the lucky one that got the cancer at age 50, the genetic counselor said I should be screened more often for colon cancer even if the tests come back negative since there is so much of it in my family on both sides.
If I knew about the connection between colon and uterine cancer earlier I would have been a lot more aggressive with my gyn, we had no suspision of cancer the only reason I went for the hysterectomy was I didn't wnat to deal with the heavy bleeding supposedly casused by the fibroids, its a good thing I went in when I did.

I will let you guys know what I find out on Friday.

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