Strange Question

Having a high incidence of cc in our family we are able to compare the various experiences and see what worked and what was of little value. Some of you seem to have responded well to treatment. Our experience leads us to think that a hands off/minimal intervention by the medical profession is the way to go for us. Major operations (in our family) have proved useless and aided the spread of cancerous cells around the body. The patient was then not just fighting the disease but they had the op to get over as well and the horror of many other cancer sites in their body. This diminishes quality of life considerably.

One intervention that did improve symptoms was the insertion of a stent to aid the flow of bile.

So what I am saying is yes cancer kills but sometimes it is aided and abetted by meddling practitioners.

Not sure waht Rubenesque means but I am 45 and newly diagnosed and fairly slender for my age. I have had hormonal problems in the past, very prone to miscarriages and experience monthly migraines that coincide with my cycle. I tend to be a Type A personality which may have more to do with it though I’d do anything to learn how to be a Type B if that would cure me of this thing.

Sure this is a grisly topic — but one all of us have spent a lot of time pondering.

The fact is, the docs don’t know the answers any more than we do. I am thinking more and more than some people live normal lives for YEARS with a tumor slowly growing, never knowing it until it reaches a certain point of causing symptoms and impacting the function of our bodies.

I have a theory — based on nothing since my only medical degree has been earned watching “House” — that there is something of a slower growing (indolent) form of tumor that affects women in 40’s/50’s, oftentimes women who are “Rubenesque” (meaning we score a little high on the old BMI scale) and women who’ve had some issues with polycystic hormones or other hormonal irregularities.

Anyway — thought I’d toss in another 2 cents. How much does that make?

Questions about disease progression:

1.) Liver reserve: I have been a patient at the Baylor Liver Center in Houston for 10 years, and a patient at MD Anderson for one year. My liver docs have told me that one can function normally with only 10% of the liver working. The liver is a very “redundant” organ, so it has a huge reserve. However, once you pass the 90% damage point, the complications pile up really fast. That is why someone can go for years with a liver tumor with no symptoms at all, even though the liver is being slowly eaten up.

2.) Cachexia: More commonly known as “wasting” syndrome. Cancer tissue is very ineffecient in the way it metabolizes food in order to grow and stay alive. As a result, it “steals” food resources from the rest of your body, resulting in weight loss and general malnutrition. It is a vicious cycle. The more weight you lose, the weaker you become, the harder it is for your body to fight off the cancer, the more it grows, the more resources it steals, and the more weight you lose, etc.

This is kind of a grisly topic, but I hope this posting helps to answer Robyn’s original question.

Violarob in Texas

I am not in anyway trying to sound like a doctor, especially in the case of Cholangiocarcinoma, where I feel many doctors dont even understand the cancer. The reason I took so long to find this site is b/c my fathers Oncologist never called the cancer Cholangiocarcinoma, she called it Bile Duct cancer, and so that is the term I was using to find info. I personally think my father had the tumor growing at the tip of his Bile Duct for a long time. 1 year b/f it was diagnosed our family had noticed he had become a bit sluggish, and sometimes spacey, but we attributed it to old age, but in looking back, going from being such an active strong person, the change was rather sudden. It wasn’t until a year later that one day my mother noticed his whites of his eyes were yellow.
I now understand what it means when people die of “complications” from cancer. Infections are very common. My father has had 6 since his Whipple surgury, and if Hospice care doesnt treat the infection, then I think eventually the person will sucumb. Also malnurishment could be a factor. The combination of pain killers and pain from the cancer can cause a loss of appetite, and sometimes nausea, and that could also be a factor. Also, if a tumor does grow, or tumors multiply eventually they will block organs. In the case of my dad, if the mets grow in the lungs, that will absolutely effect lungs and breathing.
I dont claim to be an expert on anything about this cancer, but I do know what I have learned about my dads specific situation; considering the location and size of his tumor and the lung mets, that I guess he has had since they detected the tumor in his Bile duct, we are lucky he as been surviving 20 months.
I agree Joyce, I do hope we find some answers soon, and maybe one day put an end to this tragic situation.

Robyn…….there is always a subject uncomfortable to some and welcome by others. We try to do our best. I agree with you, many times it is easier to deal with a situation when some answers shed light on the situation.

Kris, I had left lobe and gallbladder removed upon DX. It was stage 3-4 at the time I believe. Then did nothing but follow up scans for about five years or so before trying anything. I started eating alot of fruit and drank some Eissiac tea, other wise ate the same foods.