Gallbladder Cancer 2023 (All Stages)

CaliforniaPatricia
CaliforniaPatricia Member Posts: 40 Member
edited November 2023 in Rare and Other Cancers #1

(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.)

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Comments

  • BM22
    BM22 Member Posts: 16 Member
    edited April 2023 #2


  • BM22
    BM22 Member Posts: 16 Member
    edited April 2023 #3


  • CaliforniaPatricia
    CaliforniaPatricia Member Posts: 40 Member
    edited March 2023 #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!

  • CaliforniaPatricia
    CaliforniaPatricia Member Posts: 40 Member

    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.

  • irisgal
    irisgal Member Posts: 19 Member

    Thank you! This is such a lonely cancer. Most groups lump gallbladder cancer in with bile duct cancer, and while similar, it is not the same.

    I am T2b, have had gallbladder removed, liver resection, and now I'm on capecitabine. They did find mets in 2 lymph nodes, so I don't know yet if it has metastasized more. The waiting is the worst!

  • irisgal
    irisgal Member Posts: 19 Member

    This is encouraging. Please post news of your journey.

  • CaliforniaPatricia
    CaliforniaPatricia Member Posts: 40 Member

    I'm so sorry about what you're going through. It can feel exceptionally lonely when people assume that your gallbladder cancer is no different from other organ or tissue cancers.

    Capecitabine is the primary standard of care at this time in the United States. It can have some awful side effects--ones I hope you are able to avoid, such as sores on the palms of the hands and soles of the feet.

    I totally agree that it's frustrating to have gallbladder cancer lumped together with other cancers that originate in nearby organs or tissue. It frustrates my oncologist and oncology surgeon as well. It leaves them not trusting existing studies when attempting to draw conclusions about how/whether/where the cancer might progress/spread despite aggressive treatment with chemotherapy and resectioning surgery.

    Here's another gotcha: Before the first round of chemotherapy treatment and before and after resectioning surgery, I had CT scans. They showed no presence of cancer anywhere in the torso. However, the surgery removed 5 cancerous lymph nodes. In other words, the standard way of tracking the presence of cancer isn't working for my specific cancer DNA. I learned that each of us has uniquely constituted cancer cells, which might respond differently to tests and to treatment. In a separate post, I'll share what my oncologist is doing about this.

    Usually gallbladder cancer is staged at the time of discovery. If that's true for you, and the pathologist's report said that you were at Stage II-B at that time, I wonder about the specifics. However, my understanding (which could be wrong) is that, if there is cancerous tissue elsewhere (those 2 lymph nodes), you might want to ask your oncologist about the staging. Here's the gallbladder-cancer-specific staging chart, where

    T = how far through the gallbladder the primary tumor has gotten

    N = number of lymph nodes that test positive

    M = the presence of distant metastasis

    • stage 0: Tis, N0, M0
    • stage I: T1, N0, M0
    • stage II
      • ​stage IIa: T2a, N0, M0
      • stage IIb: T2b, N0, M0
    • stage III
      • ​stage IIIa: T3, N0, M0
      • stage IIIb: T1-T3, N1, M0
    • stage IV
      • stage IVa: T4, N0-N1, M0
      • stage IVb: any T, N2, M0 or any T, any N, M1

    My resectioning surgery was after 4 cycles of gemcitabine + cisplatin (the combination treatment alternative for capecitabine). The pathologist's report identified 5 cancerous lymph nodes at porta caval, porta hepatis, and hepatic artery locations (within the liver-gallbladder region). This is still considered a local/regional metastasis, but it tells me and my oncologist that we must continue with chemotherapy, at the very least. In the original cholecystectomy (before the first cycles of chemotherapy), there were other contributing factors for assessing the severity of the cancer. For example, the presence of signet-ring cancer cells (which I had) is considered more likely to produce a "negative outcome" (eventual appearance of the cancer in remote locations, moving the patient to palliative care to minimize the cancer that's in a new location).

    I very much appreciate my personality at this point: I take one day at a time and enjoy that. I'm grateful each day for all the good people and surroundings I have in my life. I am extremely curious, so I read and understand a lot about this devil of a cancer. I'm not losing any sleep over what might happen weeks and months from now.

    I wish you all the best! And come back to this discussion board when you're feeling that you're alone in this gallbladder cancer fight.

  • irisgal
    irisgal Member Posts: 19 Member

    Thanks for all the information. It is really frustrating that so little research is being done on GBC, but as one person on a Facebook forum mentioned, no one is all that interested in an obscure deadly cancer, hence no funding.

    I suspect that I am no longer IIb, but I plan to push the question to my oncologist. Now that I've had gallbladder removed, resection, and2 cycles of capecitabine, I am simply waiting for any mets.

    I am almost 79, which is apparently old for this disease, but I am in very good health and am tolerating the chemo.

    I have a pretty good attitude right now.

  • CaliforniaPatricia
    CaliforniaPatricia Member Posts: 40 Member

    In the United States, the National Institutes of Health is beginning to fund studies for these "rare" cancers. The initial challenge they face for these is that it's difficult to get statistically valid cohorts (such as, separate groups for Stage II and Stage III gallbladder cancer or separate groups for two different treatment protocols). (1) The population to draw from is very small. (2) The percentage of patients willing to participate is miniscule. For the study I'm in, there are many university medical centers participating and the most any center has been able to sign up is 5. The next is 4. The remainder include only 1 to 2 patients. It would be great to have rich literature of previous, valid gallbladder cancer studies. No one would love this more than oncologists who have GBC patients to treat.

    I asked my oncologist about "staging" this morning. Here's what he had to say:

    There are three types of staging, each associated with a different point in treatment.

    (1) Numbers at time of discovery: TNM (Only at time of discovery; it does not get modified later).

    (2) Numbers after surgery: ypTNM (p for pathology--what pathologists find with the tissue samples they receive from the surgeon)

    (3) Numbers after completion of chemotherapy: ycTNM (c for clinical evaluation by means of imaging, blood tests, or other non-surgical method)

    If the cancer reappears after complete remission, they don't do staging again. They call it a "recurrence." It is obviously a bad thing.

  • CaliforniaPatricia
    CaliforniaPatricia Member Posts: 40 Member

    Here's another thing to consider: Prognosis varies greatly depending on characteristics of the cancer cells. I have two conditions that are bad news: "poorly cohesive carcinoma" with "signet ring cells." Both of these fall under the category of "poor prognosis" because these are the most aggressive types of cells, can spread rapidly, especially via lymph nodes, and are more chemotherapy-resistant.

    I also discussed this with my oncologist this morning because I want to be sure I'm basing my thinking on facts. He concurred that having 6 cancer-positive lymph nodes discovered, the poorly cohesive carcinoma, and the signet ring cells (which are part of the poorly cohesive groups of cells) requires aggressive treatment, but the options are limited. Of course, nothing is cast in stone by knowing these conditions and the general implications.

    Meanwhile, I need to focus on getting my neutrophil counts back in an acceptable range--a prerequisite for continuing chemotherapy, which breaks down the ability for bone marrow to produce this type of white blood cell. Neutrophils fight infection.

    I'm 73. Like you, I'm otherwise in good health and am tolerating chemotherapy extremely well. I am so grateful for that!

  • irisgal
    irisgal Member Posts: 19 Member

    Some days I despair. I am on the off week of capecitabine and am very fatigued and aches. I am only finishing cycle 2 and my neutrophils are very low.

    Your posts are the best I've seen, and they are very helpful. I live in Santa Fe NM, and so far I have not met or heard of anyone here with gbc.

    But other days I am fine.

  • CaliforniaPatricia
    CaliforniaPatricia Member Posts: 40 Member

    I imagine that despair is very common among those being treated for cancer and might feel especially discouraging for a cancer where so little is certain. It's crucial to get a good night's sleep, especially if you know you have days when you are "down." Sleep is healing time, both physical and mental.

    I'm separating my response to your comments into a couple of posts. This one is about one way to deal with despairing days and "fine" days.

    One activity that helps me deal with all of the diverse feelings I have is art therapy. It requires no talent whatsoever, just some paper and something to draw with: pencil, ink pen, colored pencils, watercolor paints, etc. There is something about seeing how I'm feeling, in all its messiness, that I find grounding. And grounding keeps me from being anxious or overwhelmed. There are a few types that you might try. (1) A free-form style can be colored scribbles, splotches of paint, representational sketches (for example, rain for sadness, puddles for despair, sunlight for hope)--whatever works for you. (2) The pie is made up of wedges, each one with a distinct feeling that you have. You print the word for each feeling in its own wedge and then do whatever you want: color each wedge with a color that you associate with the feeling or drawing something very simple. Here's an example of the free-form style. I'm actually terrible at drawing, so I start with a pencil and erase a lot. It's okay if a few days later, you look at what you've drawn and say "I don't feel like that now." Or you can just scribble on the paper with the colors you are "feeling."


    You can find "Feeling Wheels" on the internet. I look at one when I can't quite put a word to how I'm feeling. Here's my own "snapshot" emotion wheel for what I was feeling on a particular day. This was the day I found out that I had squamous cell carcinoma on the back of one hand and would need a Mohs procedure. Like I needed another type of cancer! (The mention of "thigh" is because I had a squamous cell carcinoma there previously.) Some of the wedges are about skin cancer and others are about progress with gallbladder cancer. I try to balance positive and negative feelings when I use a pie.


    I hope this gives you some ideas for acknowledging your despair while dealing with it constructively.

  • irisgal
    irisgal Member Posts: 19 Member

    Thank you for the suggestions. I used to be an avid knitter, bit I have hand-foot from the chemo and it is very hard to use my hands.

  • CaliforniaPatricia
    CaliforniaPatricia Member Posts: 40 Member

    Part II: Dealing with Side Effects of Capecitabine (or gemcitabine & cisplatin)

    Has your oncologist mentioned using an injectable drug to promote neutrophil production? They are very expensive, even when covered by your health insurance, but they can make a big difference. Insurance might cover one brand but not another that's basically the same thing. Zarxio and Neupogen are two of the names. Here's the thing: Unless you want to incur even more expenses, you need to be able to give these injections to yourself. The needles are very thin, so there's no pain with poking it into your pinched belly tissue. But some people freak out at the idea. For me, Zarxio has allowed me to continue with chemotherapy treatment at the full dose when, otherwise, I would have had to wait an extra week or two. After my most recent (5th) cycle, 7 days of Zarxio, and a week for my bone marrow situation to improve, my neutrophil count was still too low. I don't know what we will do if the condition persists. I picture those cancer cells doing a happy dance (and multiplying) each week that they're not bombarded with gemcitabine and cisplatin. 😕

    I hope you are keeping your oncologist informed about your side effects. Someone on your oncology team might have suggestions for how best to deal with fatigue and aching. I've read that the most important thing is to get a solid night's sleep each night, so resting for fatigue should be limited to 15-20 minutes once or twice a day. It's best to go by what your oncology team recommends, though.

    Some people find that being distracted with some kind of mindful activity (gardening, preparing ingredients for a meal, coloring in a coloring book, etc.) gives them relief from side effects such as aching bones.

    I hope you make quick progress in improving your neutrophil count!

  • CaliforniaPatricia
    CaliforniaPatricia Member Posts: 40 Member

    I'm really sorry to hear about this. One of the reasons I went with the Stanford study is that they were not going to prescribe capecitabine. I had consulted another oncologist who insisted that capecitabine is what he would prescribe. He talked about the sores on the palms of the hands and soles of the feet as if that were a minor inconvenience. Good grief! Everything I do that I enjoy involves my hands. Most of those activities involve standing, if not walking.

    I imagine that my art therapy idea for dealing with despair wouldn't work either. Could you listen to upbeat podcasts while going for walks (when the New Mexico weather allows)?

    Has your oncologist recommended a particular kind of protective glove for you to try for preparing meals or other hand activity that's not as demanding as knitting?

  • irisgal
    irisgal Member Posts: 19 Member

    Perhaps I was dramatic. I rarely have despair, but when I look at the reality of how aggressive this is I lose perspective. I have relatively few side effects. I am getting excellent care from my team, and I hope my tests will be good. I know realistically that I will probably have 1-5 years if everything goes well. The past 4 months, from the gallbladder attack, stone removal, gallbladder removal, recovery, liver resection, recovery, and now chemo, have gone quickly, and now we will see.

  • CaliforniaPatricia
    CaliforniaPatricia Member Posts: 40 Member

    It's so good to know that you have figured out what you anticipate will be the reality of the progress of your gallbladder cancer and (it seems) you're a peace with that. This type of cancer can be aggressive, but a lot depends on conditions beyond the TNM numbers. I'm sure you've read your post-surgery pathology reports and know best whether there are other hopeful or concerning characteristics. It's amazing how the treatment time, starting with a cholecystectomy, can fly by and, yet, feel like it is taking a very long time to complete.

    What we share here can be helpful to others who read and lurk. 😉 I hope you'll check in from time to time.

  • irisgal
    irisgal Member Posts: 19 Member

    Yes, I've read the path report. It said I have cancer in 2 of the 4 lymph nodes, but liver margins were clear. So, right now I don't know whether it was caught, which is unlikely. My oncologist hasn't found any trials, hence trying the capecitabine. This is a really aggressive and sneaky cancer. I will find out more.