Gallbladder Cancer 2023 (All Stages)

I go back and forth about whether it's better for me to assume they haven't gotten all of the cancerous lymph nodes or to focus on hoping they have. I'm glad your liver margins were negative (before resectioning or after?). I had a positive margin, as found after the cholecystectomy, and a negative margin after the 4B/5 liver resectioning. I've had a total of 18 lymph nodes removed, spread over the porta caval, porta hepatis, and hepatic artery. I think my surgeon wanted to be aggressive. With only camera vision, he suspected one of the lymph nodes was cancerous. Turned out to be 5, plus the one removed last November.

Capecitabine is the current "standard of care," although the combination of gemcitabine and cisplatin seems to be talked about more often recently.

Every 3 months, I have a CT scan with contrast. This is primarily to look for remote metastasis, but also to check on the liver-pancreas-biliary tract region for further local metastasis. We'll see what the ctDNA tests (Natera) show in another week or two.

I like your choice of words: aggressive and sneaky. You are so right!

Hi!

I can sure understand how anyone with gallbladder cancer could be confused about what happened and what's now happening with their body! It can sure be tempting to say, "Enough! I don't understand this disease or what I've been told, so I'm quitting chemotherapy!" For some people, the complexity alone is overwhelming, so eliminating the complexity helps one's mental state. I have a cousin who did exactly that for another rare cancer that she had diagnosed. We get to make our own decisions about what we're willing and able to deal with.

Pancake attitude: For those not from the UK, it appears that the NHS is Britain's National Health Service, its centralized healthcare system. "Pancake attitude" is not a phrase I've ever heard before. It doesn't show up anywhere on the internet as a term. Perhaps you can elaborate?

Diagnostic imaging: I hope you can read some of the recent discussion board conversation here that includes understanding how diagnostic imaging fits into the overall management of cancer treatment. Your oncology team should be able to answer your imaging questions if you directly ask how accurate CT scans with contrast are in discovering regions with gallbladder cancer cells that are at the III-B stage in terms of their extent of location and, possibly, their characteristics (cohesive? shape?). My experience is that the technologies are limited, even the most advanced DNA analyses.

The nature of cancer cell reproduction. I'm sure you know that "a few cancer cells" are enough to reproduce and swim around your lymphovascular system, only to land and reproduce elsewhere. (To quote my oncologist, "It only takes one cell" for there to be the possibility of future cancer.) I also can't imagine how an oncologist would know that there are only a few cells. Have you had access to the pathologists' report that's based on your resectioning surgery? (I'm sure this varies from one country to the next.)

TNM vs. numerical staging. Do you know your TNM numbers at the time of the cholecystectomy? after resectioning surgery? This would tell you something about what you're up against now. I was diagnosed with T3N1M0 after my cholecystectomy, which translates to Stage III-B gallbladder cancer. With the removal of more cancerous lymph nodes after resectioning surgery, N bumped up to 6. There was no guessing. The pathologists (quite a few of them!) analyzed samples from every tissue that was removed during the cholecystectomy, and another team of pathologists analyzed samples from every tissue that was removed during the resectioning surgery. My oncologist strongly resists stating a prognosis as long as we're still doing our best to eliminate all of the cancer cells.

Inevitable delays in diagnosis and treatment. Other cancer patients have told me that delays are not an indication that your oncology team is incompetent but are most likely due to limited resources for diagnosis, plan development, and/or professional staff availability. Also, treatment is often delayed due to lab work that indicates other conditions such as neutropenia (very low neutrophil counts; neutrophils are a kind of white blood cell that you need in order to fight infections). In fact, treatment delays and extended calendar time are the norm in many kinds of cancer.

Art therapy to deal with our understandings, feelings, and attitudes. I've written elsewhere in this discussion board about the use of art therapy. I agree that it can be very helpful in becoming aware of your emotions with respect to your gallbladder cancer. Art therapy is one way that I deal with reality, imagine the best outcomes, and capture how I feel about it all at one moment in time. It seems that might be how you're benefiting as well. Art therapy helps me to deal with my cancer treatment in a constructive way.

I hope that you are at peace with your "relationship" with your cancer. I guess that's the most important thing we can do for our mental health.

I'm so sorry that you've gone through so much! My heart aches for you. The whole range of what you've gone through is clearly overwhelming. It seems like an utter nightmare.

I remember when I had waited 2+ weeks after resectioning and still didn't have the pathology report. I contacted my oncologist's team who told me that, because it was the surgeon who ordered the pathology analysis, the surgeon would have to have someone on his team persist with the pathology lab. When I got the report (on a Sunday night) and saw how many pathologists had been involved and how each separate diagnosis was reviewed by at least one additional pathologist, I was still frustrated but I also understood the delay. There are many parts of the United States where high-quality care for gallbladder cancer isn't available. I'm fortunate to live very close to a research medical organization at a world-renowned university and hospital. It's part of the reason I share what I've learned.

One thing I've learned is that there are so few solid studies that focus exclusively on gallbladder cancer that there isn't a lot an oncologist can say about longevity that's backed by sufficient data. In addition, if the mean time before cancer recurrence after resectioning surgery and chemotherapy treatments is 6 months, that does not tell us much about a specific person's prognosis.

I hope you're finding comfort in the positives. Again, I'm so sorry for what you've gone through.