Genetic Testing
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Ashley…..I am very, very, hopeful for new medical discoveries to come our way and for cancer to be treated in a much different way than what we see at the present time.
I am crossing my fingers for a good outcome on the BRAC testing.
All my best wishes,
MarionThank you all for your responses. I have had the BRAC Analysis testing done last week and should know the results within 10-14 days. I’m a little nervous even though if I do test positive for either of the gene’s I know it doesn’t mean that I do have cancer. Just a little scary thinking that my daughter may be going through exactly what I am going through right now with my mom. Its a horrible feeling. I hope you all have a blessed day!
Ashley
Thanks so much Marion. The website was very helpful and I think I found the information that I was looking for. Thanks again!
Take care,
MarniHello Marni….the NCI offers a great site on gene testing:
http://www.cancer.gov/cancertopics/understandingcancer/genetesting
I hope this helps.
All my best wishes,
MarionHi Ashley,
My mom also has stage IV inoperable cc, and I was wondering more about the genetic testing that you mention. I would really like to learn more about it. Could you tell me where you got the information about the BRCA testing and its connection to cancers such as CC, colon, etc.
Thank you!
Marni
Joolz….we have seen it to often for one cancer to be followed by another and then another. We had been told that some people are susceptible to have cancer but, the reasons for that to be unknown. Indeed it has been quite a haul for you. I am crossing my fingers and toes for your acceptance in the clinical trial.
All my best wishes
MarionI found out I had CC when my 7 1/2 month “cancer free” MRI was being read. I was treated for liver cancer before that… had my left lobe taken out and supposedly all the tumors were gone. Well they came back with a vengeance. Besides whatever is left of my liver being inundated with tumors, I have a tumor at the base of my spine. I cannot be operated on. Gem/cis did not work. Hopefully I will be accepted into a clinical study with Sir-Spheres.
Previous to my liver cancer, I had anal/rectal cancer where they took out a huge tumor and gave me a permanent colostomy.
It’s been quite a haul since May of 2009.
Ashley- Being inoperable is why one reason I qualified. They replaced whole biled duct. I have learned and posted on this site how LUCKY I was. I never really knew till I really started to recover. My diagnosos was “you have bile duct cancer, probably 6-8 months to live and you need to be in Dr. William Chapmans care for a liver transplant to survive”. I skipped all the middle nonsense and opinions. I have a great email from a gentleman who’s wife was Dr. Chapmans patient and would love to forward to you.
I had to qualify for trial. My clinical trial included chemo, 24hour chemo pump 5FU and 5 day a week radiation. I then did laprosopic surgery to make sure it had not spread. I then went on transplant list (about 5months after diagnosis) I took oral chemo (Xeloda) while I waited.
You can read my story on FB (Catherine Sims-Dunnagan) I would love to talk to you so you can email me at jrdunnagan@gmail.com or 618-567-3247.
Transplant is still not readly acceptable as a treatment, so don’t rule out until you talk to a transplant doctor, who knows whether it is or isn’t an option.
Lots of prayers-CathyKathy–
I was told by my doctor that I should have this testing done. I have numerous family members who have had uterine, colon and breat cancer. This BRCA testing, tests to see if you carry the gene BRCA 1 and BRCA 2. If you do carry the gene BRCA 2, the information I received said that you are at a greater risk for developing, CC, colon, pancreatic and stomach cancer. Because cancer is extremely high in family and the average age of diagnosis is 40. If you have a high family history, most insurances will cover the cost ($4,000) test.
jathy1125–I am curious on how you were able to get a liver transplant after being told that it was inoperable. Dr’s told us that mom would not receive a transplant…and now they have even ruled out surgery. What type of treatment did you have during your clinical trial. We should find out today what the next steps are for mom..if any.
Kathy…..you are right. Presently there is no testing available for Cholangiocarcinoma. But, for those wanting to rule out genetic predispositions for other cancers this “may”be one way to do so.
All my best wishes,
MarionAshley:
My husband Tom had NO symptoms, but because he was on a cholesterol lowering drug, he routinely had his blood work checked every three months. In Jan 2008 his blood work was totally normal. In Mar 2008, his liver function blood tests were 10x elevated. That was the first sign that ‘something’ was wrong. It took another 2 months to pinpoint (via and ERCP) that there was a narrowing of a bile duct in the left lobe of the liver. During the ERCP they did a ‘brushing’ and those cells indicated cancer, cholangiocarcinoma…before that fateful day I’d never even heard of cholangiocarcinoma. Tom never had any symptoms, did not feel ill, was not jaundiced or anything…
Go with God, and KEEP KICKIN’ THAT cancer.
Margaret
Ashley-I was 52 when diagnosed after just being itchy. I am a live because of a clinical trial. I had a liver transplant. My tumor was in the bile duct, was stage 4 and inoperable,, and was told 6-8 months with out a transplant.
I think you will find most cc people are in some kind of clinical trial, that is our main hope.
I am interested if you can do genetic testing for cc, I have a daughter. I din’t think you could.
Lots of prayers for you and your mom-CathyAshley,
Now I’m confused. I’ve just researched the BRCA analysis you mentioned:
“…getting some genetic testing done to see if we carry the gene that can cause CC, breast/ovarian, stomach, pancreatic, colon cancer. “
Unless I’m not digging into this far enough, the BRCA analysis is for breast or ovarian cancer. Are you under the impression it will tell you if you carry a gene that causes cc? This is something I’ve not heard about. Please enlighten me.
My first thought is that you don’t have to worry about inheriting cc from your mother.
I have never heard of a specific inherited gene that causes CC. I have read some people inherit DNA mutations from their parents that greatly increase their risk for certain cancers, like breast cancer. Maybe they are starting to do more research on this.
There has been no one in my family history that has had bile duct cancer. My mother is 95 and my father lived until he was almost 94. We just didn’t have cancer in our family line.
I have the same diagnosis your mother has. I’m 19+ months past diagnosis and doing great. Planning another cruise.
I for one am very pleased clinical trials are starting to happen for cc. and would join one if needed. This all depends on the person, what they’ve previously been through, and what the state of their health is right then. Clinical trials for other cancers have produced great results. It should be your mother’s decision.
Ashley, I never had testing as we didn’t have it when I was younger. I think it is an excellent thing you are doing. My husband Teddy just started itching one day and 2 weeks later had totally jaunduced. That was it. At first we thought he had allegies, boy were we surprised! I hope hour tests turn out great and please let us know.
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