Topic: Strange Question

I have read in several alternative medicine books that tumors do not kill people. As long as the tumor does not grow, met. or block the flow of essential fluids, people can live forever with a tumor.  As I've said before, my Mom has a 10cm tumor that is not blocking anything at this time. It is wrapped around the portal vein, but not blocking it or causing any symptoms. I guess my question is, what actually causes death in a cancer patient. I know no one is the same, but I don't understand why the Drs. are so grim about mom if the tumor is not actually causing problems that would kill her. I know this is a morbid topic, but I just want the honest truth about her condition. We've heard everything from 3-6 months to years. Do the cancer treatments themselves cause death? Is it liver failure? I just don't understand and I want to. How can someone feel healthy and have no symptoms only to be gone weeks later. It just does not make sense to me.

Re: Strange Question

Because they do grow, they do metastasize and they do cause blockage eventually.  And as far as I know, it happens to everyone.  I don't mean to be negative, but from everything I understand, it happens to every single patient.

Re: Strange Question

Robyn

I was told by my surgeon, after being told that surgery was no longer an option, that it would likely be an infection that would ultimately kill me.  I would guess at it being pneumonia if the tumours metastise to my lungs.  But I daresay all options are still available.

Ron

4 (edited by JeffG Fri, 27 Feb 2009 16:01:23)

Re: Strange Question

Hi Robyn... I'll add in my 2 cents.  Cancer is systemic, in the blood. the red cells slowly die off causing anemia and wasting of the body and then the white cells that prevent infection become over burdened and infection sets in until you have a major organ affected and in turn failure.  That's my take on it all.  In fact most hospice care does not treat infections as it is considerered part of the process of passing.  Some tumors can sit for a long time and not bother you.  But like my liver it finally appears it has been going like a work horse for so long, It just decided to give in.  Well, that is my thought process on it all.  With that all said, I have personally witness total wasted anemic body until the heart muscles stop without infection.  So the ole saying swings around again as it is an individual and can be different for many.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

5 (edited by marions Fri, 27 Feb 2009 21:16:15)

Re: Strange Question

If the tumor simply sits there and does not encroach on vital organs couldn't we assume that a person could live with it?  I often wonder as to why some people diagnosed with CC respond so well to chemotherapy whereas others simply do not respond at all.  I have been told that chemotherapy can only penetrate tumors up to 3 or 4 centimeters therefore, the debulking of the tumor can be considerationfor some patients.  And what about those patients who respond well to one of the more common drugs and, that for years?  Charles R. Thomas and Clifton Fuller's book:  "Biliary Tract and gallbladder cancer" describe the distinction from liver cell cancer amongst other lies in the following:  A prominent desmoplastic stromal reaction and mucin production are key features in favor of a tumor being a cholangiocarcinoma.  And it goes on to say:  The presence of definite biliary dysplasia is potentially very useful, but in practice is rarely seen and can be very difficult to distinguish from reactive biliary changes seen as the result of obstruction due to any kind of tumor.  The book continues to describe for CC to be positive for biliary cytokeratins (CK7 and CK19) while they are less frequently expressed by liver cell cancers, although in some series up to 50% are CK7 positive.

There are so many questions in re: to this cancer although, I believe that in the future most of these disease will be genetically distinguishable. 
Point to ponder for the day,
Hugs to all,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Strange Question

Hi Robyn,

Well, I might as well add my 2 cents for what it is worth. I think that a person can live for a long time with a tumor or tumors that are not causing any symptoms. This is just my opnion based on our experiences.

My husband passed away 7 weeks after his first symptoms & the progression was very fast at that point. I now believe that he probably had this tumor for many years with no symptoms & no treatment.

You asked "How can someone feel healthy and have no symptoms only to be gone weeks later"? I'm not sure how, but I do know that it happens, as it happened to my husband.  In his case he died from liver failure caused by the Cholangiocarcinoma.  My understanding of that is that the tumors (intrahepatic), blocked the bile ducts & caused the liver to fail.

There are so many questions about this type of cancer & not enough answers. You are right, none of it makes any sense. I don't think any of us really can understand what it is all about as it is so different for each individual. Hopefully in the near future more will be know about it & there will be some sort of breakthrough as far as detecting & treating it more effectively & efficently.

You , Mom & your family will be in my thoughts & prayers.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Strange Question

Please clarify me if I'm wrong (I know there are much better experts than me out there), but I was under the impression that the liver can keep going at a very low capacity, but it's the kidneys that shut down because they are so dependent on the liver, so it's actually kidney failure that happens before liver failure. I think that's what a doctor told me (in a much more logical and scientific way). Also, I had heard about infections being a natural part of the process, as a few people said. And some tumors just start growing incredibly quickly.

I feel terrible -- being so clinical about this, but it's an interesting question and something we need to understand in order to beat this disease. Thanks for bringing this up, Robyn, and all my best wishes to you, your mom and your family.

Joyce M

Re: Strange Question

Joyce,

I too am uncomfortable talking about this as we are, but I think you are right. Understanding is the pathway to beating this disease.  I'm not sure about the kidneys, but what I was told by the doctor and is also stated on the death certificate is that he ultimate passed away from liver failure due to cholangiocarcinoma. In Jim's case 95% of his liver was affected so that may be part of the equation. At this point I don't think he had an infection, but the tumors were growing and multiply incredibly quickly during those 7 weeks.

This was our experience. It does seem as if there are as many different experiences & answers as there are people affected by this disease.  Somewhere you would think there would be a common thread.

Marion, the genetic thing is another whole issue. Can it be distinguished genetically and are our children & future generations more at risk?

Once again, so many questions & so few answers.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Strange Question

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.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Strange Question

Ummm, is there a doctor on this board?? It would be really nice to get this question answered by someone with some knowledge, instead of us all pooling our ignorance.

(Sorry if this sounds rude... but I would like to know the "official" answer!)

Kristin

Peace, hope, and healing to all!

Re: Strange Question

Hello Robyn and thanks for fielding the difficult questions. It is a very tough issue to get our heads arounds & I've asked many of the same questions... as I wanted desperately at the time of Dad's diagnosis (Nov. 08) to know how this was all going to unfold. I too simply couldn't reconcile how a strong healthy person could be handed such a sentence. CC felt like an unwanted intruder in our lives, that with enough research, experts & support, we could push back out the door.  I've learned from the countless hours on this board that each case is different. I asked a best friend how cancer kills & she said that in her experience, the pain meds slowly take such a toll on the heart, that it eventually stops. With Dad, he did wake one eve with chills/fever & an infection that had spread through his blood stream. They caught it in time & he was ok, but it was very serious.  The chemo has made him very weak & his immune system is down, this compromises his health & makes him susceptible to other germs. The radiation, which he will begin next week will destroy one kidney & part of his lung... at best, per the docs. However, if he doesn't pursue it- in hopes of shrinking to size of resection, the cc will surely take him.

The tumor itself has been indirectly related to all the complications to date & those to come, but in and of itself- has served as a secondary source of all setbacks.

I also believe that the common threads that bind those with cc are yet to be understood.  I worry about genetics, in that my son now has two grandfathers - on both sides of his genetic pool, with cc. His other Grampa passed in 98 from cc complications associated with resection.

You and your Mom are in our thoughts Robyn. I know it's not easy, she's lucky to have you!

Tess

Re: Strange Question

Does anyone ever discuss the emotional component to cancer?  I have heard that our health is not just influenced by the physical plane but by mental, emotional and spiritual influences as well.

I have heard that cancer is "anger turned inward" and it would seem that this would be especially so in the liver which in oriental medicine is considered to be the "seat of anger".  Unexpressed rage has to manifest itself somewhere and possibly stores itself in tumors.  Stressful events can stimulate the growth of the cancer cells.

A little on the metaphsycial side, but interesting to consider.

O my Father, if it be possible, let this cup pass from me; nevertheless not my will but thine be done.  Matt 26:39

Re: Strange Question

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.

Re: Strange Question

Robyn,
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,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Strange Question

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.

Kris

Take it to the Limit,One More Time! (Eagles)

Re: Strange Question

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!

Re: Strange Question

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.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Strange Question

Robyn,
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 M

Re: Strange Question

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.

The  Lord is my shephard

Re: Strange Question

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.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Strange Question

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

Re: Strange Question

Thanks Violarob,

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.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Strange Question

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?

Re: Strange Question

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).

Re: Strange Question

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.

O my Father, if it be possible, let this cup pass from me; nevertheless not my will but thine be done.  Matt 26:39