March 14, 2009 at 11:56 am #26564speckledhenMember
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.March 13, 2009 at 4:05 am #26563
Kristin….This is what I have been told by several surgical oncologists:
Depending on the vascular invasion by the cancer the liver will re-generate accordingly. If no major vessels and arteries have been affected then yes, both lobes can grow back to its original size. If however, veins and arteries have been affected then the remaining lobe of the liver will take over the entire function. It was pointed out that the volume of the liver is determined by the size of the patient (small people have small volume, large people large volume)
Hugs to all,
MarionMarch 6, 2009 at 10:16 pm #26562rose-mayMember
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.March 6, 2009 at 5:01 pm #26561lisaParticipant
I think that makes sense, Irene. I’ve always been on the Rubenesque side of the scale, with a larger waist and slimmer hips. I never had hormonal issues that I know of, but did have early menopause (age 42).March 6, 2009 at 4:54 pm #26560ireneaMember
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?March 4, 2009 at 1:48 pm #26559darlaParticipant
That describes almost word for word what I feel happened to my husband. By the time he had any symptoms at all his liver was probably 90% damaged. When the official diagnosis came in it was 95%. He was never sick until then & it went swiftly at that point. One of the doctors actually used the word “wasting” which made me very angry at the time, but apparently was accurate.
It is a hard topic to address, but I think it does help to better understand all the what’s & why’s. It has helped me & hopefully will help others too.
DarlaMarch 4, 2009 at 8:28 am #26558violarobMember
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 TexasMarch 3, 2009 at 6:58 am #26557
A point well made and that is precisely the reason for the development of this website established by Stacie, Rick and Sara. If you peruse the home page and read up on History, Stacie mentions many of the reasons made by you.March 3, 2009 at 5:29 am #26556roma35Member
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.March 3, 2009 at 3:08 am #26555jmoneypennyMember
I completely understand your need to know and understand what’s happening with this disease. As for your comment, Kristin, about having a doctor answer this question, I know that I was told, and others were told, many of these answers by DOCTORS themselves – and the answers are all different! It seems they have their own theories and can’t agree, or there is just too much variation in what happens. Also, it seems some tumors are faster-growing than others. And also, intrahepatic seems to present with less symptoms than extrahepatic, until the very end.
As for the emotional component that Rose May brought up, I hesitate to give it too much credence, because it just seems too much like blaming the victim. Sure, there are people with great attitudes who beat this thing (look at Jeff G) – so it CAN help in some cases. But there are others with equally positive outlooks who succumb very quickly. Once again, no clear-cut answers.
Hoping we find some real answers soon,
Joyce MMarch 2, 2009 at 10:48 pm #26554
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.March 2, 2009 at 8:59 pm #26553robynMember
Thank you all so much for your info. I know this is a terrible topic, but I have one of those minds that have to know the why and how of everything. I am an LPN but haven’t practiced in a while. I was always going to go back to school to get my RN, just haven’t done it yet. I’ve been teaching Kindergarten for two years so who knows if I ever will. I know just enough about medicine to want to have more understanding, and to scare myself!March 2, 2009 at 5:52 pm #26552jeffgMember
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.devoncat wrote:I think you can live with a tumor for a long time with no problems…but it depends on the type of cancer. My friend’s father has prostate cancer and he takes medicine for it and it is basically a chronic disease and not life threatening. CC is different, but how different is individual. Jeff, didnt you live with your tumor for about 4 or 5 years before doing anything with it? I could be remembering that wrong, but I think that is the case.
KrisMarch 2, 2009 at 5:29 pm #26551darlaParticipant
I agree, it is all very frustrating. I still can’t understand how Jim could be that ill & show no symptoms. I also wonder why it was so hard to detect & diagnois when it affected 95% of his liver. He wasn’t even jaundiced until the last week. Apparently that is why I have heard it called a silent killer. It appears that in many cases it grows slowly & silently and then hits with a vengence.
I don’t have any answers for you other than to say you need to go with what you feel is right for your Mom based on the information she is given. Hopefully your Mom can make those decisions with your help & support.
I will also repeat what many have said before. Getting as many opinions as you can is never a bad idea.
Stay in touch & let us know how your Mom is doing.
Love & Hugs,
DarlaMarch 2, 2009 at 4:41 pm #26550robynMember
Our Dr. in Houston told us that this is a very slow growing cancer which in turn makes it very slow to respond to chemo. Are there different types of CC? Some that grow slow and some that grow fast, or do they all eventually start spreading faster? Since chemo causes a compromised immune system, and radiation causes liver damage, which seem to be the two fatal complications, then maybe we should have opted for no treatment, if this is indeed a slow growing cancer. I don’t know, there are too many questions and not enough answers. It is all VERY frustating.
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