Gallbladder Cancer 2023 (All Stages)
(I've started this topic because the most recent annual forum I could find was for 2018.)
I have gallbladder cancer, discovered during what was anticipated to be a routine laparoscopic removal of my gallbladder, based on the presence of gallstones. As is the case in "Western" countries, gallbladder cancer is most frequently discovered only when it has become "advanced" (Stage II-B and higher). Mine is at Stage III-B, which means it has not metastasized to remote locations, but it has found its way outside of the gallbladder. I have signet-ring cancer cells, which are a more aggressive form of cancer. (In East Asian countries, the characteristics of gallbladder cancer are different and the disease is much more frequent. So, their studies are not necessarily relevant.)
In the United States, there is now a National Institutes of Health-coordinated study that is specific to gallbladder cancer. (There may be other studies with an exclusive focus on this type of cancer. This one is being carried out at a variety of university medical institutions.) Because gallbladder cancer is so rare, it's too often lumped together with other types of biliary tract cancers, even though researchers know that gallbladder cancer has some characteristics that are different. So, this study of treatment protocol is particularly worth following for its unique focus. (I am a "human subject" in this clinical study regarding the potential benefits of having half of the chemotherapy regimen before surgery). My oncologist and oncology surgeon have been adamant that the findings of larger studies that merely include some gallbladder cancer patients and generalize based on findings for pancreatic cancer and common bile duct cancer should not be interpreted as applying to gallbladder cancer.
Reading papers that look at median time from stage of discovery to death is discouraging. Reading papers that look at the longevity for 2 years to 5 years is also not encouraging, but (with imperfect data, contaminated by findings for other cancers found in the area of the gallbladder) some people do make it to the 5-year mark after surgery and chemotherapy (assuming a starting point of Stage II-B to III-B, with lower percentages the further the disease has progressed).
The question I have is what is the net benefit of going through chemotherapy if your gallbladder cancer is already at Stage III-A or III-B? (Having surgery to remove the gallbladder and anything else that's obviously cancerous in the vicinity is imperative, as far as I'm concerned.) I've seen numerous papers that discuss median time to reappearance of the cancer with a very small difference between what happens with aggressive treatment vs. surgery only. Subtract how awful you might feel for some of those months of aggressive treatment (surgery + recovery + chemotherapy takes approximately 7 months), and you're trading off 7-8 months of energy now for hoped-for energy later, where that might only last a couple of months. I cannot get a straight answer from my oncologist about median time to recurrence for gallbladder cancer, probably because reliable data does not exist. He just says "We're going for a cure."
What have your experiences been with treatment? (Obviously, we're not going to hear from the majority who have not been cured and have died.)
edited March 31 #5
Your situation sounds like a nightmare. How incredibly difficult this very long process has been for you! With everything you share, I can only imagine how pervasive the cancer was within you prior to the resectioning surgery.
What I can see in what you write is that the medical team discovered the extent of the cancer gradually. They did not lie to you or intentionally mislead you. Instead, they were able to do more accurate staging when they had more tissue to pass to the pathologist for analysis. It is the pathologist who does the diagnosis, including staging and noting specific characteristics of the cancer cells. At the very least, your cancer seems to be quite aggressive across the biliary tract region: liver, gallbladder, lymph nodes, and bile duct. (Nothing in the pancreas?) Your resectioning surgery must have been massive. Today, most resectioning surgery can be done laparoscopically. Clearly, yours was not.
We each make our own decisions about whether we want to go into treatment to destroy remaining cancer cells with chemotherapy and/or radiation therapy. If you have chosen not to undergo treatment (refusing to use the oral chemotherapy that was prescribed), you should be able to find support here for you to make whatever informed decision you choose. You do understand that the remaining cancer cells in your body will continue to replicate and spread. So, I'm wishing you all the best!0
Update: I'm doing great during chemotherapy! I have been blessed with no serious side effects (other than neutropenia, for which I'm receiving treatment), and even mild side effects are few. I've had 7 of 8 pre-surgery infusions. Lab work (blood analysis) is done before every infusion to be sure my body is able to handle it.
My gallbladder cancer protocol (per the study I'm part of) sequences treatment as follows. (The current standard of care is a little different: Resectioning surgery precedes chemotherapy. Then there are 8 cycles of chemotherapy infusions.)
The treatment protocol I'm part of:
(1) 4 cycles of chemotherapy infusions over the course of 3 months. (Before treatment began, I had a port placed in my upper chest that is used for all infusions. It makes the infusions much easier.) The theory is that having chemotherapy first reduces the amount of cancer the surgeon needs to deal with and, therefore, may improve the overall outcome. Each cycle is 21 days long, with an infusion of gemcitabine and cisplatin on Day 1 and Day 8 of each cycle. The rest of the 21 days allow the drugs to reach the cancer cells. Also, that third week without an infusion allows my bone marrow to rebuild a healthier amount of white blood cells, needed to have a healthy immune system. To reduce the risk of neutropenia (low white blood cell count), I inject Zarxio (a form of filgrastim) at home, once a day for a few days after the infusion. The injections are working very well.
(2) 1 month of recovery from those 4 cycles. CT scan with contrast to verify that the cancer has not spread from the liver-pancreas-biliary tract area. We proceed if the cancer has not spread remotely. In fact, my cancer antigen level has decreased substantially! Cancer cells are dying.
(3) Resectioning surgery. The standard laparoscopic approach when there is a "positive margin" (cancer beyond the gallbladder, into the liver) is to remove sections 4B and 5, as well as any part of the liver bed that might include gallbladder cancer. The rest of the standard resectioning approach is to remove about 6 lymph nodes (especially since one was previously removed and was cancerous in my case) and to "clean up" (surgeon's term) the areas that were involved in the original cholecystectomy, essentially trimming away the connecting tissue that might have some cancer cells. My surgeon will explain his intentions when we meet before the surgery date because they may differ slightly. Of course, it's only when he has cameras inside the area that he'll know whether a more significant amount of material needs to be removed.
(4) 1 month of recovery from surgery. (I healed very quickly after the cholecystectomy, so I anticipate the same outcome at this time.)
(5) 4 cycles of chemotherapy infusions over the course of 3 months. With an initial 3 months of chemotherapy and surgery to remove all regional cancer, these last 3 months are so that the chemotherapy can deal with any remaining cells. Cancer can return if there are remaining cancer cells, even if there aren't many of them.
Whether or not to be treated: After my diagnosis, I thought carefully about whether to proceed with treatment. I assumed that the stereotype of the patient who has difficulty getting out of bed, loses massive amounts of weight, is continually nauseous, loses their hair, etc. would apply to me. Given the data on post-treatment survival times for Stage III-B gallbladder cancer after treatment show a very short median time before recurrence, and the multi-year recurrence also is reported to be limited, I might be trading feeling good now for feeling good after the treatments, meanwhile, feeling awful for a long time. But the problem with this thinking is that we simply don't have enough studies focused on North American or Western European gallbladder cancer that meet the criteria for statistically significant findings on longevity. I have a strong background in scientific research in another field, so I have an expectation that studies will follow sound protocols for data reliability and relevance. Also, my oncologist and surgeon have pointed out the flaws in previous studies. So, I decided to "go for it" with treatment. I have had none of the side effects I had imagined. Time will tell whether my longevity is better than those in the study who receive surgery first and 8 cycles of chemotherapy second.0
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