Taking a poll to see if anything is similar with our cc patients……
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Tess and Louise, Thanks for getting back with me.
Tess, Very interesting about the regional questions about cc.
Louise, I checked into genetic testing. The insurance told me, “Sure we can do it, but this one specific test was going to be $3000.00, and you will have to pay for it.” Ugh! Thank you for your thoughts.
Lots of love,
AmyAmy,
I understand the fright in the genetic question. I recently asked my oncologist about maybe getting a genetic test, because my mom and I were both diagnossed with cancers in the adenocarcinoma family. Mom’s oncologist suggested looking for a permutation in the P53 gene, but I was asking my oncologist about it and how to get such a test. Her response included the following:
Genetic testing can easily run into thoursands of dollars and insurance will not typically pay for it.
Cc has been relatively rare and genetic testing needs thousands of samples before “norms” and “mutations” can be distinguished.
Even when genetic testing for breast cancer identifies a mutation, it does not guarantee that a person will get cancer, just that the risk is a little higher. The increased risk only serves to suggest more frequent monitoring to support early detection but there is no vaccine or preventative medicine.
Though thousands of genetic samples had been collected in the search for cures of the (more common) breast cancer and ovarian cancer, the gene marker for the BrCa1 and 2 were only identified after someone thought to look only at samples from people whose diagnosis came before they turned 50, suggesting that non-genetic factors also contribute to the occurance of cancer.
Therefore, my oncologist did not encourage the genetice testing, even though she knows of my family connection and how many people are in my family (I have 4 brothers, 3 sisters, 6 kids, and 1 grandkid so far).
In other words, your risk of getting this cancer is probably no higher than the risk in the general population. And the knowledge you gain by dealing with your Mom’s cancer and learning all about it probably offsets what unmeasurable increase in risk might exist.
I was prepared to have the genetic testing even knowing that their is a cost but the benefit is not guaranteed and would probably not occur in time to help even my own grandson. However, until enough people demand it, someone is interested in researching it, funding can be secured for it, and some sense of cost/benefit analysis tips the scale in favor of the research, such testing is unlikely to happen. So for now, I am not scheduled for any more genetic testing.
To some degree, my doctor’s response disappointed me because I would like for someone to benefit from my experiences. But I am an accountant, and the cost/benefit analysis was clearly understood, so my questions were answered for now.
This may be one of your longer replies to this question, but I hope it addresses the issue to provide some satisfaction.
Wishing we all had answers to our questions.
Louise
Amy, I forgot to mention that regional cancer clusters has also been raised as a possible common thread. There are several people on this board that live within a close proximity to us in upstate NY. In addition to my Dad, my husband’s grandfather passed of cc in 98, and another local family friend’s brother just a couple yrs. back.
There’s also been debate on vets of asian-american wars experiencing cc at higher than normal rates.
You’re not alone with the heart disease, it is just within the last few yrs. that cancer has surpassed heart disease as the top killer of Americans under 85.
Wishing you the best Amy.
Tess
Hi everyone,
Thank you for your posts.
Marion, We think that Mom’s cc was more than likely caused by her exposure to Thorotrast, although as we all know… who really knows?!?!?
Patty, I agree with you 100%. My mom is definitely the kindest person I have ever met!
Sounds like there are lots of different backgrounds that we all come from. I must admit that I asked this as sort of a selfish question, the genetic question frightens me some. We don’t have anyone in the family with cancer. Most of the deaths in our family are caused from heart disease, so that has always been my main worry. As we all know, life is full of some curve balls!!!!!!
Thank you again for your responses. Big hugs to everyone here!!!!!!!
AmyI had been perfectly healthy my whole life before being diagnosed with cc.
No medications, x-rays, chemical exposure or any of the other risk factors.
We have no idea why this started.
My husband has always been healthy. He did work in a paint store for 10+ years and we were thinking the chemicals in the paint thinner etc might be the cause.
Hi Amy. Teddy was NEVER sick except for a hernia surgery. No medications at all. He was in Korea and in his other life a “good” drinker. I love what Patty said. But that is a common thread among our “family”.
Hi Amy, my Dad had colon cancer 5 yrs. before the cc. He did not go for routine colonoscopys or checkups before this, and they believe it was a polyp that had been in there for nearly 10 yrs. He had it successfully removed, followed by chemo and radiation. That turned cancerous. I’m not sure about his meds, I want to say cholesterol and blood pressure.
Tess
Hi Amy,
I had never really had any health problems. I have had high blood pressure for years, but never had any gallbladder problems. When I fell sick, I think it was actually my gallbladder acting up as they found a big stone in it at the same time they found the tumor.
However, my father was in the Army and I did spend a year on Okinawa (1972) while he was stationed there. I have often wondered if that had anything to do with this disease. Unfortunately, I would not be qualified for the same benefits as the veterans are, even tho I was there because of my father.
I did take NSAIDs for years for arthritis pain…Vioxx and Celebrex, which really screwed with my kidneys so I have been diagnosed with chronic kidney failure, but it could be much worse than it is.
I guess I have had IBS type problems for about 5-6 years, but have no idea if that would have any bearing on the disease or not.
Did I say I didn’t have any health problems????
Sue
Hi Amy,
I too have been curious regarding possible links to cc. My husband suddenly became very ill last Sept. and had whipple surgery for bile duct cancer Oct 08. Now cancer has spread to the abdomen area (stage IV). We can’t help but wonder if the cholesteral meds he had been taken for years had something to do with his cancer…was on Zocor for several years and then was switched to Crestor 3 months before he got sick.
DeeI have noticed some similarities–cc patients are some of the darn nicest, caring, and interesting people! With a sense of humor to boot!
Patty
Amy….one known risk factor is exposure to Thorotrast (thorium dioxide) which was recalled due to suspicion that it may cause cancer. This chemical formerly was used in medical imaging. In fact, my husband had radiation with this chemical. He also had an congenital abnormality which had been detected by his surgeon. That in itself could be a risk faction. It is heavily suspected that the high rate of CC in Taiwan is caused by the infection with the parasitic liver flukes Opisthorchis viverrini or Clonorchis sinensis. Some of our Vietnam Vets are trying to find an answer to this. Also, many of our members have been diagnosed with Primary Sclerosing Cholangitis and with Chronic Ulcerative Colitis.
Okay, so I have been wondering about something… I guess that I want to sort of take a poll…… is there anything in “common” with our cc patients on the board? Obviously we will never really know what causes this type of cancer, but I was just wondering if we could see if there was any sort of link between the patients on our board.
My mom: she was 65 when they diagnosed her. No sort of illness in her past. Around 1951 she was in a car accident and they used something in the x rays which was recalled years later and has been found to cause cc. Diverticulitis (not sure if that is spelled correctly) runs in the family, but she was never diagnosed with it. When she was 60 she had a few precancercous colon polyps removed. She had high cholesterol, so was on cholesterol meds for quite a few years before her diagnoses. That is about all that we could come up with for her.
Thanks a bunch!
Amy
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