How long does CC take to develop?
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Hi Eli,
This is such a difficult question and one I would LOVE to know the answer to. I have no idea how long I had cc before it was discovered or why I got it. My Dr’s aren’t able to give me any answers and to be honest with you, they don’t seem very interested in finding out why I got it and how long I had it.
Take care,
Susie
Hi, Eli:
My surgeon told me that my tumor (which was approx 5x6cm when it was discovered) took about 9 months to get to the size it was. That was his guess anyway.
I never had a lot of g.i. problems. I did, however, have gall stones. Which may or may not have travelled to my bile ducts. I had 4 major gallbladder attacks before my gallbladder collapsed. I always thought it was my bad back acting up and causing pain. I never went to my primary care physician. I wish I had: this story might be quite different if I had. But as they say, hindsight is 20/20.
Good luck. Hopefully one of these days they’ll have some more answers for this awful disease.Kris
Eli:
In my husband Tom’s case, he was never in Vietnam so as far as we are aware, he had no contact with a ‘fish fluke’. He served his time in Spain, France and Germany. He was however in constant contact with PCB’s from the Green Army Paint which during his time of service contained Chroumin 6 a highly cancerous agent that manifests itself some 30 – 50 years later. Tom was only diagnosed because he was on a cholesterlol lowering drug and he had blood tests for his liver function every 3 months. In Jan ’08 his blood work was normal, and in Mar ’08 his Alk Phophaste was 10x the normal level. That was the first indication that there was anything wrong.CC can grow slowly BUT it can also be agressive. In Tom’s case the first tumor that was discovered was a slow growing tumor. He was able to have a successful resection and had clean margins. (The only cure for CC known to date besides a liver transplant) The VA did not feel that he needed any chemo or radiation. 18 months later he presented with Jaundice. The new tumor was inoperable, his VA doc gave him less than 6 months. He had radiation and chemo. Just about three months ago they found a new tumor and it tripled in size in three months and Tom lost his battle on 11/20/2011.
We will probably never know where his cancer came from or how got it. Why was one tumor slow growing and the latest one fast growing? All I can say is that cancer is a mutation of normal cells and for whatever reason the body is not able to stop the mutation of the cells.
I wish you and your family the best and keep us posted.
Hugs,
Margaret
(Widow of Thomas G. Lepp who lost his battle with CC on 11/20/2011)Hi,Eli,
From my personal experience, it took about four months to grow from zero to 1.5cm and took another 12months to grow to a 2.1×2.5x3cm tumor at resection time.
God bless.Diane… you are right that UC and PSC do not cause CC. However, both UC and PSC are *confirmed* risk factors for CC. Meaning that, the incidence rate of CC among PSC/UC patients is higher than the incidence rate of CC among general population. In case of PSC, it’s *much* higher. PSC/UC cause chronic inflammation. Chronic inflammation is believed to be the breeding ground for CC.
Lainy… despite elevated risk, very few UC patients develop CC. Your doctor might be right that you have no reason to be alarmed.
DISCLAIMER: I don’t have any medical education. Take anything I say with a BIG grain of salt. Always consult your doctor, etc.Lainy… I think we all have a theory that makes perfect sense to us. In my wife’s case, we point to the salmonella infection that she contracted in high school. That’s 26-28 years ago. By her account, it was absolutely brutal. Bloody BMs, bloody vomiting, etc (sorry for the graphic details). She did recover from it, but her digestion was never back to the old normal. We’ve been together 20 years… she has had digestive issues for as long as I can remember. The symptoms remained rather mild, so we never took them seriously. Looking back, it’s quite possible that she had an undiagnosed chronic condition.
We discussed this theory with our surgeon. He was very skeptical. He said go to a pharmacy and find the digestive aids section. It’s one of the largest sections in the store. Digestion issues are very common. He said that if a link did exist, the hospital would be swamped with CC epidemic.
Re Thailand:
If I remember correctly, CC is the #1 cause of death in the 40 to 60 age group in Thailand. I think they are ramping up their research on liver flukes as the cause of CC.
Wow, Diane. I am in the middle of a severe case of UC. My first but it has been coming on this whole last year. I kept attributting my problems to other things. My GI guy said that actually it is more rare in “older” adults and that it is probably not going to happen to me again, but it has been a bear. I would say I am at 75% better and that took a month, the steroids are killing me. Hate to complain but wanted to say that my Gi told me also that stress does not cause it. It doesn’t help but does not cause it. I actually asked him if it could develop into CC, and he said not at this age nor did he feel it really did. At least Brad and I got the same answers from 2 entirely different doctors.
Eli, you present an interesting question. This is a cancer for which there is scant information.
My husband Brad died in 2008 as the end result of CC. He was diagnosed with ulcerative colitis (UC) in the 1970s. He had his colon removed in 1982. In 2004 he was diagnosed with PSC (primary sclerosing cholangitis) and in 2005/2006 with CC.
As Brad recalled, his mother probably had UC. In “those days” UC was considered a stress disorder. Clearly not so.
As far as Brad’s CC, UC does not cause cholangiocarcinoma, but many CC patients have suffered with UC. Brad’s CC may have been simmering for at least 30+ years.
Eli, may I confuse the situation even more? Many of us believe that our husbands contacted the Parasite ‘liver flukes’ while serving in Korea and Nam. Nothing has been proven but it sure is strange. Liver flukes comes from contaminated fish and water. The parasite adheres to the intestines for 30 – 40 years, leaves and when it leaves it leaves behind CC. This whole time is remains undectable. The VA doesn’t want to hear about it and the little research being done is mostly in, I think, Thailand. Of course this does not account for the rest of our Members. I also notice that in just our group here, there are more coastal members than Mid America. Just thoughts I have had. So your doctor may not be far off in his estimate of how long it ‘cooks’. Then again I always say that the only thing we know for sure about CC is that we know not much!
Our oncologist referred us to genetic clinic. The goal of the consultation is to discuss our daughter’s cancer risk. They may do some genetic testing if they find it necessary.
I know it’s impossible to tell when exactly my wife’s CC started to develop. It could have been before our daughter was born or it could have been after.
One of the surgeons we met told us that CC takes *up to* 20 years to develop before symptoms show up. I have no idea where he got that number. I searched high and low and I couldn’t verify it. All sources confirm that CC grows slowly but they don’t mention any specific time frames. Which makes perfect sense… the doctors can’t screen for CC, so how would they know when exactly it starts.
My question to the board is:
Has anyone heard or read any concrete numbers, similar to what that one surgeon told us? Or is he completely out to lunch?
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