Gallbladder Cancer 2023 (All Stages)

First, I am sincerely sorry that you have any kind of advanced (Stage III-B) cancer, but especially one that is a rare form of a rare cancer. I trust you're taking very good care of yourself. I'm sure it's encouraging that you have days when you feel well enough to undertake activities that feel more "normal."

Your description sent me off to find relevant research. I found one paper's abstract, written by researchers at The First Hospital of Jilin University in China. My previous investigation suggested that Korea has the most published research that is specific to gallbladder cancer, though not your SCN form, but some of the findings are not applicable to gallbladder cancer in Western Europe or North America. My oncology team, especially my surgeon, have expressed their frustration with the poor quality of research on gallbladder cancer but doesn't look at it distinctly.

The treatment protocol for my gallbladder adenocarcinoma is 4 cycles of chemotherapy, followed by resectioning surgery (not optional), followed by 4 more cycles of chemotherapy. That surgery discovered 5 additional cancerous lymph nodes--the preferred processing and distribution medium for these kinds of cancers. The good news is that there are now a total of 6 less of those nodes in my body. What is "rare" within this rare type of cancer is that a subset of my gallbladder cancer cells are a signet ring cell carcinoma. This is "a rare form of highly malignant adenocarcinoma." Nevertheless, my oncology and surgery team are following a course of treatment as if I have promising chances of remission, if not cure.

Would you mind sharing what tests you are having to track the progression/regression of your cancer? My protocol includes CT scans with contrast every 3 months. Unfortunately, they didn't show the lymph node cancer that was only found in surgery. Are you having cancer antigen tests? Every two weeks, I'm tested for CA 19-9 and CEA types of cancer antigens. They are tests that can be misinterpreted but can still play a part in understanding how I'm doing with this cancer. We've now added a DNA/gene marker test that is fairly complicated, both scientifically and logistically. This test should be able to more accurately and quickly detect the presence of my specific gallbladder cancer cells, providing more time for planning. Only time will tell. It's not like the lab has an abundance of gallbladder cancer tissue and blood samples that it's "trained" on.

Perhaps you've also concluded that the best we can do is to take one day at a time. Be grateful for what we have each day and be in total conformance with what our medical teams tell us we need to do. ❤️

I'm certainly happy to know that you're feeling successful in combating this disease. I don't know that anything is more important than this: We're in charge when it comes to how we feel and what perspective we have, and we're self-compassionate when positive feelings elude us.

#gbc #gallbladdercancer #gbcancer #adenocarcinomagallbladdercancer #smallcellneuroendocrinegallbladdercancer #gallbladdercancertreatment

I’m so impressed with your perspective on your SCN gallbladder cancer! Thank you for sharing that with us. I hope you give yourself regular attagirls for choosing that perspective! You’re helping your body and mind in ways we probably can’t even imagine.

(I’m a professional—utterly not famous—writer. I’m also a teacher by nature and previous profession. I like details. I especially like them when I imagine someone reading what any of us contributes here. Perhaps one detail will speak to that person or answer a question or identify a question they want to ask their oncologist.)

You touched on many topics. And out of respect for that, I’m responding, topic by topic. (a heads-up to those who prefer a short, bulleted list of information)

Surgery: Resectioning surgery is brutal. Mine involved an incision of over 7 inches in length. It included removing segments 4B and 5 of my liver. They cut through the abdominal wall to remove potentially cancerous tissue, including about 18 lymph nodes that are in 3 major blood vessels running through the liver near those segments. (I had to look quite tenaciously to find a relevant diagram just now, and this one does not include where these lymph nodes would normally be found. For me, that was the porta cava, hepatic artery, and porta hepatis. I’m including the diagram here in case you’re curious to know what your oncology surgeon might be looking for…and for other readers.)

Imaging: This is so tricky! I’m so grateful to have a highly experienced GI oncologist! It sounds like you have a gem of an oncologist as well. Depending on the nature of the gallbladder cancer and its cells, one test might reveal locations of cancer while, for a distinct type of cancer cells, they can hide by not taking up a contrast “dye.” Such is the case for PET scans and signet-ring cancer cells: The cells can hide. At least that’s the explanation I understood after wondering whether they could also hide from a CT scan with contrast. I was told that it’s less likely they won’t be detected by a CT scan. However, they weren’t detected. 😞

Choice of Drugs & Side Effects: I also have partial hearing loss. Mine is due to Ménière's disease. I feel the sense of ear pressure in that ear is stronger now; tinnitus can be more annoying (but I’ve learned to ignore it); but hearing loss seems to be stable. I was resistant to one oncologist's recommendation of capecitabine because it commonly has a side effect of sores on the palm of the hands and soles of the feet. Fortunately, the study I'm in uses gemcitabine and cisplatin.

The Beast: Yes, gallbladder cancer is a beast and the kinds that have “special” dangers (your SCN) are beasts on steroids (sometimes, literally, because steroids are used to manage nausea). This morning, I was listening to an interview with someone who described learning of her sister’s “rare cancer that is twisted and nefarious.” Of course, I wondered if she meant gallbladder cancer.

Positive Images—Past and Future: Those of us who can afford to work with coaches/therapists while dealing with treatment co-pays, those of us who can handle the expenses not covered by a Medicare Advantage Plan (in the U.S.) without high stress are quite fortunate! I love the idea of recalling positive memories. Right now, I’m focused on the present and future. I have always reflected on joyous, fulfilling past experiences, so that wouldn’t be an add for me. I’m picturing a new patio door that is going to enable me to look out on my native gardens—to be installed in 2 weeks. I’m picturing returning to Spain next spring (which involves both wonderful memories and anticipation of new delights). If my cancer is not in remission at that time, I’ll be okay with not going—disappointed, but at peace with it.

Mortality: We each have our own relationship with the finite nature of our lives. As you point out, that perspective might change from one day to the next. I am not sure why, but I’ve always been comfortable with the notion and physical reality of aging toward death. My perspective never changes. I anticipated (financially) living to the age of 87, as my mother and both grandmothers did. Having Stage III-B cancer at the age of 73 has changed that assumption but not my acknowledgment of my own mortality. As you also said, taking things one day at a time keeps us from being anxious about a future we can’t entirely know. I hope you’re able to continue with your here-and-now focus and that your days are as good as possible.

The “Inconveniences”: Losing hair is another of the side effects that affects different people differently. I hope you find a way of dealing with the loss of hair that works for you! I anticipated losing all of my hair in a fairly rapid fashion. I did not do anything to prevent that other than discontinuing the use of hair conditioner. (This is something the American Cancer Society recommends. I don’t know why it exacerbates hair loss during chemotherapy, but I found that it does.) I watch the hair that accumulates at the bottom of my shower and wipe it out. My bathroom floor is a hair magnet after blowing my hair dry. Still, I have enough hair to do some modest styling, and I’m keeping it short so that there’s less weight tugging on the hair follicles and fewer tangles. At our infusion treatment center, I see women (in particular) who have chosen baldness, wigs, or head coverings. Whatever works, right?

Those Darn Neutrophils: As I think I mentioned in a previous post, my savior with regard to neutrophils (and, therefore, overall white blood cell count) is Zarxio. This is one of the filgrastim injectable drugs that compensates for our bone marrow’s decreased ability to produce these cells. I just had a "stat" CBC this morning. The components of my WBC count are super strong. In fact, my oncologist (or his physician’s assistant) may suggest I hold off on using Zarxio. Not long ago, they had to push back my entire treatment schedule by a week because my neutrophil count was super low. I’ve been told by a few people that it’s normal to have these delays. They do take some mental adjustment. The first time it happened, I cried. I think gallbladder cancer patients are all eager to get through the treatment and to be found cancer-free.

The Gallbladder Cancer discussion board needs to be visible to more people, but I don't know what the protocol is for mentioning it in other forums, such as Quora or Facebook. I'm sure that would lead to an increase in postings and responses by a variety of people with gallbladder cancer.

Maybe it's that I assume there is still gallbladder cancer swimming around inside of me that I'm not anxious about test results. The results will either confirm my assumption or come back with "no cancer found," which is not the same as "no cancer." I think my perspective makes sense for someone like me, diagnosed with Stage III-B gallbladder cancer that included signet-ring morphology cancer cells (8 months ago ).

It does seem very important to have people you can approach and say, "Sometimes this gallbladder cancer situation is really difficult for me to handle." (I'm going to compose a separate post about this.)

I think most gallbladder cancer patients in Stage II-B, III-A, and III-B are in the group of anxious patients: hoping the cancer is gone, wishing confirmation of test results would come more quickly. We have no credible % survival vs. time (in months(!) and years) graph to consult that would give us a prognosis for longevity or one that shows the median time for the cancer to recur after it has gone into remission (i.e., it can't be found, but it could still be lurking somewhere inside). At least with that kind of "data," we have a much better idea what we're facing. The lack of reliable data that focuses exclusively on gallbladder cancer is why I take one day at a time, enjoying the day to whatever extent possible. Will I be able to continue with this way of living if/when I have a distal metastasis? I don't know, though I imagine I will. What I'm saying in a long-winded way is that I completely understand that it can be difficult to live with the unknowns of what's happening now and what might be coming, while knowing this is an aggressive cancer. 💙

Hooray! I had great news today: The ctDNA tests that were conducted with blood collected from me 8 weeks ago (4 weeks after resectioning surgery) were negative for gallbladder cancer! The test is far more sensitive and accurate than the typical CT scan with contrast. Great thanks to my resectioning surgeon whose "cleanup" of my gallbladder area was clearly excellent. And thanks to my oncologist for suggesting this test as the best way to know how chemotherapy was progressing.

I was diagnosed with Stage III-B gallbladder cancer in November 2022. For the next few years, I'll be tested every 3-6 months for signs of a recurrence. Meanwhile, I have the confirmation that--despite how few side effects I had--chemotherapy did its job. ☺️

Yes, American Cancer Society reminds cancer patients that just because someone doesn't have serious side effects, that does not mean that the treatment isn't working. (Lots of negatives there. Translation: Treatment can be highly effective even when it does not cause serious side effects.)

I had surgery almost 3 months ago. I spent a week in the hospital because my digestive system came to a complete halt. They can't let you go home until everything is on the move. The other requirement for discharge is that you're no longer using an opioid to control the pain. The surgical pain was excruciating for the first few days. I thought I knew what a "10" on the pain scale was. This pain set a new high. (Previous high: a blinding migraine headache where the slightest sound was so violently, intensely painful that it caused nonstop retching.) Another patient might have a far less intense pain level post-surgery, and be able to go home after 4 days.

Resectioning surgery requires cutting through the abdominal wall at the bottom of your ribs on the right side. The incision is curved. Mine is over 7 inches long. (I'm 5 ft 3 in & 130 lbs; I assume larger people would have larger incisions.) Recovery can include abdominal fluid pockets that must be controlled with drains. I didn't have that but did have significant edema across the right side of my abdomen, above and below the incision. It was extremely difficult to move in bed. Of course, you're required to get out of bed and walk, starting 24 hours after surgery. Have a pre-purchased abdominal support wrap that can support the area of your incision and keep your abdomen from sagging (maybe I'm just thinking about my aged tummy 😉). I was very concerned that when I got home, I'd have a difficult time getting in and out of bed. I have a very firm mattress and found that it was far easier to navigate the bed at home than it had been with the state-of-the-art hospital bed. What a relief!

One condition that is part of recovery is regaining energy and stamina. The rule of thumb is being at 50% by 3 months after surgery, 70% at 6 months, and 100% at 12 months. I think this is overly pessimistic, even for someone in their 70s who's not already frail. Another indicator of recovery is cessation of pain. And then there's having your digestive system behave.

At 3 weeks, I was at about 60% energy and stamina. I was no longer experiencing pain strong enough to require acetaminophen or ibuprofen, although I occasionally took a low dose before going to bed to facilitate moving around while sleeping. At 3 months, I am at about 80% energy and stamina. I would be further along if only I would make the time for aerobic exercise on a daily basis. (I have a lifetime history of not getting around to this essential part of medical self-care. I'm fortunate to have naturally good energy levels.) I anticipate that I will be back at 100% before 6 months from surgery.