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Cuz, I totally agree with Marion. Different eyes see things different as well as “experience counts”.
The radiation oncologist is the one who said I should be happy I lived this long.
My onc may be a very good women’s breast cancer onc, but the entire center has only had four CC patients of all types over the last three years. They have found a script (1. cis/gem, 2. carbo gem, 3. gem only, 4. FOLFOX6, 5. hope the patient can find a trial. They have shown little interest in looking for a trial for me.) for how treatments should be conducted and have no interest in deviating from it. Like I said, no imagination. Notice that palliative surgery and radiation are not listed. I believe the statement was something like, “No doctor would even consider surgery in your case.”
So, a note to anyone who reads this, there is NO substitute for experience. Find out the collective experience levels of those who will be treating you and how open they are to listening to second opinions from outside their hospital system. Some doctors have huge egos which don’t respond well to patients who express their opinions. (Never let them forget – this is your life under discussion, not theirs.) If you don’t like what you hear, you have two choices. You can either stay with them and hope for the best or you can look elsewhere and possibly experience a lot of inconvenience in getting treatments and possibly have the same results in the same time frame. Unfortunately, some of the decisions you make are done in the first throes of the shock of being diagnosed.
Duke
I think the answer lies somewhere in the unknown. Science simply has not evolved enough for us to have concrete answers to the question of cancer, how it evolves, and ultimately how it can be prevented and cured in all diseases areas.
From a lay-person’s point of view and in regards to the question of ultimate passing due to liver or heart, I believe that both organs are vital to sustaining life. One would assume when cancerous, the likelihood of succumbing to a disease might very well be directly related to that specific organ.
A possible resection is based on numerous factors i.e. the overall health of the patient, location of tumor or tumors (vascular, the vicinity of major vessels or arteries, etc.) and the overall health of the patient (amongst other.)What we do know is that surgical removal of cancer typically provides the best chance of disease-free survival therefore; the overall consensus is to achieve a curative resection. Unfortunately and in the majority of cases, late diagnoses makes the situation much more complex and often times, a palliative resection is the eventual outcome. Palliative is open ended. Perhaps the cancer cells will continue to swirl around in the blood stream, but can’t adhere and clump together to form another lesion (metastasize.) We are also in a good position to believe that things will stay as is; the longer out we go – the better our odds of staying cancer-free.
It is for that reason alone that patients should try to search out physicians “very” experienced with this cancer. The sheer number of patients seen collectively provides a more experienced driven specialist. Ideally, a tumor board consisting of a pathologist, oncologist, surgical oncologist, and radiation oncologist is involved in the initial diagnoses of CCA patients.
In your instance, dear Duke, we don’t know whether a different outcome could have been achieved. What we know is that you are still with us and that we want this for you and for us. (We are a selfish bunch.) Having said that, I think that statements such as: you have outlived the predictions are helpful. What predictions? You are an individual with a disease; the next person has the same disease and different outcome, good or bad. We continue to strive for inclusion in the upper curve of the equation – that is what we want to be guided by.
I am sorry to hear that you now are dealing with bone metastases, a not too uncommon occurrence which can be dealt with. Have you consulted with a radiation oncologist?
Hugs,
MarionDarla,
I “think” that things may have changed some about the needle biopsy. We asked at the time….and was told that there was “very little” chance of seeding, the way that the tools worked. It still isn’t impossible, but very unlikely. I wish it were 100% so. We did also ask our Mayo oncologist after the fact…if seeding may have occurred because of the liver tumor biopsy, and he said it was very unlikely….same explanation as the local IR guy.
I suspect that had I gone straight to Mayo though, they would have not done a biopsy. From what I’ve read, that whatever was in the liver needed to either gotten out or treated….and basically, the current thinking is to just go in after it if it shows signs that it must be either liver or CC cancer. My surgeon took one look at the CT….and said, “I know what this is…I’ve seen it before.” And man, was she sure of herself. But, the woman only operates on livers and pancreases…and she apparent did know what she saw. It just shows…the more experienced the doctor is with the CC, the better off you are usually. I don’t think she would ever have bothered with a biopsy.
Duke…I have struggled with this question also….as you know. It makes no sense to me. Except, I’ve come to believe that possibly the risk of death from a surgery for a cancer that can’t be cured or gain significant survival time, may play into the decision. In other words…..if the surgery doesn’t go forward because of significant risk of death….then the patient may have more time left, albeit, not the amount that they want. I think that may also be the case when someone has an aborted resection…..though that really drives me nuts. My surgery was laparoscopic…..to remove the whole left liver lobe….and as such….if they’re going to do that much laparoscopically, why not go ahead and do it…and try to gain some extra time…..even if some mets are found when they first go into the abdominal cavity.
My answer…..have the patient sit in on the tumor boards when surgery is discussed….and find out what the patient wants. If the patient wants to take the risk….and the docs have decided to operate anyway, why not just include another clause that absolves the surgeon from liability for the decision of the patient….and give it a try. I suspect with newer surgical techniques, they might find, among some of the better and more aggressive surgeons, that there may be some good outcomes. Sometimes, the only way things change in medicine is when some surgeons or doctors buck the status quo….and try something new….and have success….write it up in JAMA….and then more doctors jump on the band wagon and try it.
Example: When I had a heart attack in 2002….I had a stent placed in my heart artery. The cardiologist went into my wrist with the cath instead of through my femoral artery in my groin. I had a very strong pulse in both arteries….and he decided that was the best route…and he’d been trained to do it….apparently the only one in town. I saw another cardiologist for followup….and he wanted to see my incision…so I showed him my wrist….on which you could not see even where the needle went in. He was amazed…checked my pulses…said…”You’re lucky….you could have had the artery occlude. I wouldn’t have used the wrist…only the artery in the groin,” Well…he didn’t know how. Fast forward about 10 years…and another doctor came into town….and the same cardio group is advertising how he does the stents through the wrist and how much better it is for the patient, recovery, etc. AND…he’s teaching the other cardio guys in his group how to do it.” Ten years ago…..doing that angiogram and stent through the wrist was out on the edge of medical care….but now….the same doctors who said it wasn’t a good thing to do are advertising that they know how.
So, as patients…as CC patients….it seems that we have to be very proactive and aggressive to look for more opinions….and esp for the opinions of doctors who have shown themselves to be aggressive…more so than others…even other “experts” in CC. By doing our homework, with which this site and posters help, we can find some of those more progressive and aggressive doctors and surgeons more easily….get several opinions from those who have been shown to be willing to take a chance….and hope that they feel their skills will allow them to be of help. I think that even if I was told that it wasn’t a good idea…if I was sitting face to face with the surgeon in a consult, I think I would push back…..and tell them I was willing to take the risk if they were….that I believed in them. When I was at Mayo…my surgery really was pretty clear cut (pun intended), but the oncologist I saw first seemed somewhat reluctant to make the call to do surgery…at least that’s what it seemed. I told him at the beginning, I was diagnosed at home with CC and was there to have surgery. He did set up the surgical consult…and when we met up again, just before the consult….he said, “Well, you got your surgery.” I wasn’t quite sure what to make of that comment. But…just saying…I think somethings you have to push….gently and keep repeating.
Another example…one not related to CC, but applicable to the discussion: When our first son was born at 29 weeks, he was born with no breathing or heartbeat. I had a fibroid tumor in my uterus the size of a volleyball…bigger than our 2#2oz baby. Due to a really horrible situation, where no one believed that I was in labor (even though I had been in the hospital for 3 days prior for preterm labor due to the tumor degenerating) no OB was in the hospital and no neonatologist. When the neonatologist arrived he didn’t have time to even scrub, so he told us later that he did all the procedures under non-sterile conditions and was sure he had compromised our baby’s lungs beyond the prematurity issues. However, he had been quicked told what the situation was……that we likely would never have more children due to the large tumor. So, he made the decision to go ahead and try to revive our son….and did. Unfortunately, our son did die of lung problems two days later…probably due to infection rather than prematurity. That said….I will be forever grateful to that doctor for giving us our son for two and a half days….days that changed our entire lives. He went against “standard practice”, which would have been to not do anything because he could do it under sterile conditions. Did he do harm….????….yes…..but the other choice was worse. We had our son for two days.
Doctors will do what doctors will do….some will take the professionally safe route….and others will do something that makes them truly the great doctors. They won’t succeed all the time…..but they “try”.
Just my story…and my opinion.
OH…by the way….I had surgery at Mayo in 1978, 3 months after the birth and death of our first son, and had that huge tumor removed. One of the two top gyn surgeons in the world, located at Mayo, did the surgery, when our local doctors told us it wasn’t possible….I ‘d have a hysterectomy and we should start adoption proceedings. I found the surgeon myself and made the appt myself…and when we discussed it with the local doctors, they told us, “Oh yeah, we’ve heard of him…he’s supposed to be really good.” REALLY? They conveniently told me they didn’t know of ANYone who could do the surgery , except possibly their buddy at a local hospital, but when asked, they refused to say that he’d even done a similar surgery. We did go on to have another child, our son, Mike, and he has given us a grandson and another on the way. Life can be good, even after the bad. But, you have to push…and push hard sometimes to get what you want….and what you deserve. Even then, you still may not find it. We just got very lucky.
Julie T.
In my husbands case, by the time they finally figured out what was wrong the disease had progressed so far that chemo or surgery was not an an option as he was already too compromised. The thought was to try to build him up some and then consider trying something, but that never happened. CC is so aggressive and in his case it went quickly. There is also the chance of spreading the cancer with surgery, as he had a needle biopsy done at one point and I was told that even that had a risk of spreading the cancer.
That said, all of this was over 6 years ago and things have changed and progressed with both diagnosis and treatment of this disease in the past few years. I also agree with Kris that luck has a lot to do with it. Every situation seems to be different and this disease does not fight fair.
Crissie, this all makes me very angry, too.
They didn’t even discuss surgery with my dad and there are people on the site that seem they were about the same as him and they had surgery.
I don’t know how they decide.
This just makes me angry.
Duke –
Just my thoughts as a healthcare professional. I would say you are right about your mom. Chances are her body was so worn out that her heart just gave up the battle. It unfortunately is what can happen when the body can no longer take the assaults from disease.As for your question about the palliative surgery……I have no idea. I know darn well they do palliative surgery in other cases….mostly to relieve symptoms such as pain or bowel blockage or other symptoms. I know that one doctor told me years ago they don’t like doing it in some situations because it could make the situation worse…..not only with a person who may really be too sick or debilitated to do surgery but the risk of seeding the cancer farther along…..moving it to places that it wasn’t before.
I know that it is not “standard” treatment for CC but what is “standard” treatment for CC. You read through people’s posts and you know that it’s kind of a shotgun approach, although they have narrowed it down to stuff that is effective. I would think that early on resecting as much of the tumor out as possible might get more time as the tumor would have to regrow. And i do believe that some doctors are more willing to take bigger chances than others. As I look back I really think that they didn’t expect the good outcome they got on my husband’s surgery. And I know for sure if they had know the extent of invasion into the nerves, lymph nodes and blood vessels they probably wouldn’t have even tried. BUT we had a doc who opened him up and decided it was his best shot so went for it. We got lucky that it worked so far. And I do mean lucky because so much of this disease is luck – good or bad.
Maybe by asking those questions and pushing for answers a new thought will take hold and give more treatment options. One never knows.
KrisV
Cousin, Duke. Your questions are as amazing as you are! Teddy’s death certificate said CC Stage IV.
As you know he had an aborted Whipple and then the real deal. His ONC NEVER gave him a time frame and this was in Milwaukee when we were visiting family. His new ONC when we got back to Phoenix (3 months later) NEVER gave him a time frame until there was no more they could do and that was 5-6 months. All this was from 2005 – 2010. What I am driving at is our final visit to Milwaukee 5 years later after he was told 5-6 months. He insisted on going to his ONC Surgeon and thanking him for his 5 years. Dr. Henry said, Salvatore (that’s what he called him) I didn’t think you were going to make it a year. I am forever grateful we never knew that because he fought like the soldier he was! Then again. at the end I was just as glad when told 6 months so we could plan and he could come out of the war zone and be with those he wanted to be with. Duke, I know this is weird but it was the most beautiful 5 months.A little background. This is all leading somewhere but it will take a little time to develop. (Plus, you need o allow for 4 AM ramblings.)
Both of my parents died from complications from cancer. My mother died in the early 1960’s from a “heart attack” after having thyroid and breast cancer. I don’t know the exact final cause – remember in that time frame no one discussed cancer much. It was pretty much taboo – same as divorce, and having children out of wedlock. It happened but no one talked about it. Basically, her body got too weak to live. She had pneumonia twice in the preceding months which weakened her to the point where her heart gave out. My father had melanoma with considerable mets. Same thing – his heart gave out.
What I have not read anywhere here is what actually causes death. My guesses are either an infection that the immune system can’t handle or the failure of an organ – liver and heart seem the most likely ones. Any comments?
I have ICC with mets to the liver, lungs, lymph nodes, and most recently, bones. Which is why resection will not be a cure for me. What I have asked my once and not gotten a good answer to, is why they can’t/won’t attempt a resection with the goal of giving me back a reasonably functional liver that will regrow (at least partially) and improve/extend my life. Do they think I won’t survive the surgery? (Then they should have done this last spring when the main tumor in my liver was the smallest.) If that’s the case, I should have been consulted before they made that decision. They don’t want to take the time and effort (you’re going to die soon anyway, so this won’t make any difference). All I get from my onc and her colleagues is “That’s not the standard treatment.” Collectively they have seen four CCA patients in the last three years. As I have said before, they have no imagination. One even had the …. to say “You are lucky to have lived this long.” Hardly inspiring.
Does anyone have a good explanation why palliative surgery is not used more often? Are doctors simply afraid of the risk of performing surgery under any but the safest conditions? Or it needs more study to properly determine the risks? (Can’t do the study unless you do the surgery. Can’t do the surgery unless you do the study.) One doctor told me “First, do no harm.” Where do patient’s desires fit into that?
Found these links:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2504365/#S0003title
http://cholangiocarcinoma.org/webinar-s … nd-beyond/
All the more reason to find out what your onc’s experience and philosophy is. And o get second opinions if the onc comes up short.
Duke
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