Topic: Early Detection

Since my husband was diagnosed with ICC in December 2013, I have been doing alot of research on this disease.  Also, reading through the posts in these discussion boards have inlightened me to many aspects of the disease.  However, it seems that Cholangiocarcinoma, and especially the Intraheptic form, is not normally diagonosed until stage 3. 

Been in Africa, I now have a concern when I see any man with a heavy-ish middle and want to ask him if he enjoys camping, has travelled in non urban areas or stayed in any places where water and meat purity may be questionable... and if his answer is yes, to suggest that he requests a MRI scan be done of his liver.  Should there be a liver fluke, it can be dealth with before it becomes cancer.  Although the medical people may not fully agree with me, research shows that parasites could be a cause of ICC.

As more awareness is needed regarding CC, are there any early signs which one should look for, yet go unnoticed, that could detect this cance in stage 1 or 2?

Re: Early Detection

Stella, my husband got CC at age 73. His whole life he was so healthy, only had Mumps from his little Sister. Then he served a year in Korea. Being a Sicilian he would try anything different and I strongly feel he ate the baaaaad fish! With that said in July of 2005 we went up North here to a cousins house and Teddy started itching. He itched for 2 weeks and first we thought it was a bug bite then detergent but I had not changed anything like that. Then we thought it was a food allergy and were getting ready to visit children in Milwaukee for 2 weeks. A few days before we left I suggested he go to the GP. He went for LAB work and she called us the night we got to my son's. (this was ALL in a 2 week period).
She said his Billie Rubin was just a little high and we should see her upon our return. Well, our 2 week visit turned into 3 months. The next day was a Saturday and he had planned to go golfing with his son. He only went a few holes. He was not feeling well and itching all over. He kept taking cool showers which helped so I had the idea of putting ice bags on him. Early Monday morning we took him to my son's GP who announced that he was very Jaundice. And not knowing what the Doc suspected at that point I said, "Honey, you know I don't like you in yellow". One week later he had a Whipple. He was DX as Stage 2. No pain, nothing else. Then we learned our new word, Cholangiocarcinoma. I agree with you about large middles.......


Re: Early Detection

Stella and Lainy, I agree with you both about the big middles. Every man I see with a big middle, I just cringe thinking what he may be harboring and what might be in his future. Since CC is a rare cancer here in the U.S. the odds are that it's not cc. But still …

My dear sweet husband even said to me that he wished his "big tummy" could have just been fat, like all the other men out there. We were both clearly jealous of "normal" fat stomachs.

John and I lived in Venezuela for a bit, and now I wonder if he didn't pick it up there. Although, John never ate raw fish.

On the other hand, John did break his arm as a 5-year-old, at a time when thorotrast contrast was still in use in U.S. hospitals. It's my understanding this has been associated with cc risk.

It seems trying to figure out where cc comes from in a specific person could be very difficult, unless there's been a very clear-cut and obvious exposure, such as the one you mention Lainy, for your Teddy.

One thing's for sure, I'll never eat raw fish, and I'm certainly teaching my kids not to as well.  -- Margaret

Re: Early Detection

Margaret, I think I can speak for Percy as well on the subject of Sushi which is so popular among the younger generation. We don't trust it. I have 4 Grandkids here in Phoenix and they are my fabulous J's meaning Jewish and Japanese. They were  raised with 2 cultures of great food and love Sushi. We do not know where this raw fish is really coming from! I made them promise me that for their Papa they would not eat it anymore. A couple of months ago I picked up a frozen bag that simply said White Fish. I thought, wow, I have not had that since I was a kid and bought a bag. When I got home I realized I had not looked at where it came from. Yikes...Thailand...I dumped it! I now limit myself to Salmon and Trout.


Re: Early Detection

Wow! Definitely the right thing to do Lainy with the fish from Asia.

Culturally it's got to be hard for folks to switch up their diet, but better safe than sorry. Glad your grandkids are making the change.