Gallbladder Cancer 2023 (All Stages)
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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!
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It may be presumptuous, but I am not impressed with my ct scans. I hope they do a pet scan. I have an 8 cm cyst on my kidney, which keeps growing. All my doctors have said to ignore it, but when I have ct scans that is what they mention! Ct scans all said no lymph involvement but I have mets.
I am so happy to connect with you! Your info is immensely helpful.
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My doctors have said that PET scans are less likely than CT scans to show areas of gallbladder cancer presence. My oncologist and resectioning surgeon have mentioned that the protocol for PET scans is less likely to pick up on clusters of gallbladder cancer cells that are at some stages of change because those cells are less likely to take up the contrast material.
Pathologists are not oncologists. They're responsible for mentioning everything they see. In my case, they always mention metal clips that were the result of a 1966 pylorus (exit from the stomach) surgery when analyzing CT scans. They always mention the appearance of a thickened uterine wall that is always found not to be there when they double-check with more accurate (for this particular condition) vaginal ultrasound testing. For torso scans, they always mention left and right lung spots that are the result of having had pleurisy and tuberculosis back in 1970. All imaging tests have strengths and weaknesses. It takes a team to understand what the images show in context. The radiologist reports "findings" and may make less-definite statements that an observation is "consistent with" a particular interpretation. The oncologist or other specialist assesses those findings and sets aside what seem to be less important, unimportant, or immaterial to current treatment needs.
If your doctors (oncologist? primary care physician? urologist?) are in agreement that your kidney cyst is benign and of far less concern than your stage of cancer, I hope you'll be able to place your kidney worries lower down in your worry list. Of course, you don't want any kind of cyst to continue to grow. Yikes! Presumably, someone on your medical team is keeping a close watch on your kidneys (urinalysis, minimally?) to be sure they are functioning optimally, especially during chemotherapy treatment.
I try very hard not to post information that I'm not certain of. Everything I share is based on extensive reading of the research literature and direct statements by the people on my oncology team. I also know from talking with my oncology surgeon, especially, to be careful when reading the research literature. Too often, the research design is flawed, including flaws in the statistical strength of the data—for example, too small a cohort or non-representative cohorts (inclusion of cancers other than gallbladder cancer, lack of proportional representation related to sex or age). Fortunately for me, I spent my career in research and know a good research design from one that is not. I also know that researchers should not overstate or over-generalize their findings. This makes me more cautious in what I accept as factual. However, I do not have a formal medical education.
I'm really glad that you're finding what I share helpful to you.
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My team is on top of the situation. My oncologist has ordered the follow up ultrasound , because of the large size and the pain I'm having. My cyst is 8.1 cm with thickening in the wall. Anything over 3cm needs attention. If I didn't have gbc I might be inclined to blow it off.
I know a lot of things they find are unimportant, as we all have them, but she is concerned about this one.
How are rd you doing?
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I'm so glad to know you're having this further investigation. If your oncologist is concerned that you have a metastasis, of course your oncology team would want a more detailed and accurate understanding of this tumor. I hope it's a benign situation. The next question, I assume, would be whether to interrupt chemotherapy treatment for kidney surgery, given that the tumor is (presumably) growing quickly.
I'm doing great. I'm bummed that last week's chemotherapy treatment had to be delayed a week but grateful to be in very good health that allows me to do whatever I want. I'm caring for my demanding gardens, and I made a delicious from-scratch chicken vegetable soup with simple baking powder biscuits for last night's dinner--indicative of my self-care and energy levels. I have another round of lab tests tomorrow. If my neutrophil count is adequate, I'll have the Cycle 6 (of 8) Day 1 chemotherapy treatment on Tuesday.
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Haya.. I am waiting for recent CT scans to come back. It has been confusing for me. I quit chemo as was told that I only had a few cancer cells bopping about. Underlying the reason maybe the fact I lost good trust with soo many delays, misdiagnosis and basic pancake attitude from NHS. I’ve been attending an art therapy cancer group now for about 22 weeks which has been invaluable. I am 47. Stage 3b.
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Stuff that!! Going to be frank, honest and down 2 earth as life exists in us.
in US you sound like you have really good care.
here UK I feel I may have had acute tonsillitis.
been preparing for death since early blood tests showed high rises in white blood count early 2016.
four visits to AE with incredible pain upper torso was told you smoke.. nothing we can do for you!!
three days of being sick 6 months later.. gallbladder removal.. but not in a bag as in US.. standalized procedure. My surgeon was floundering on in elivator after op how he had mopped up all spillage from leaked gallbladder.
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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.
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Like most other cancer sufferers I was told by doctors consistently I have anxiety. Want medicine?
coinsidently excuse my dislexia! My muma after eight years of Alzheimer’s loosing her beloved husband, catching covid 4 times and hospilized each time, went into palliative care the same day they told me I have cancer eight weeks after the organ was removed.
I actually decided to go have a liver resection at the exact minute my late mums funeral was directed. 3.15 16th August 2022, I was sitting by my hospital bed, the nurse Rae said x for bloods. I told her it was exact time my mums funeral was started. She said this is for your own good, strapped me up really tight and almost had needle in arm. In floods of tears I retaliated. And told I ‘were’ a spoilt cow on way out.
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Tooo unwell to operate anyway? I had been visiting my mum in hospital for a week, no sleep.. two.5 hours drive away. Late July.. obviously run down. Wheezing and tired! Sent home with inhalers.
hospital phone me up in September saying where the heck are you? We are expecting you for surgery right this minute. My letter says tomorrow. I was correct.. tomorrow.
different surgeon.. quick adimission.. just another mistake!
night x
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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.
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12 weeks after resection I got results back.
a nurse told me after numerous phone calls.. you don’t not have cancer, you may just have a few cancer cells bopping around which we’d like to blast out.
a meeting with the surgeon who preformed the resection. Said liver positive, lymph nodes 1/3 and bile duct positive. 3b
thats all I’ve had.
asked oncologist when on chemo (I can assure you I’m not taking chemo just so o have an oncologist) is there any chance of genetics or even immune therapy or triles? Just a shake of head and no we don’t do that here.
I think my final foot in grace (excuse the pun) was taking bloods. They stopped even putting strap on arm. You walk in, put arm up, meddle in, extraction goodbye!
these were my final strws
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Thanks! 😂
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I seem to repeat a story about how a baby boy had cancer and on chemotherapy he weed into his body regularly as any child does, unfortunately his urine burnt his body soo proudly. I hate to give cancer away freely and unfortunately in the UK our water comes quite remarkably from our silver taps.
therefore without inharmunious intention I will keep this one to myself quite frankly
and no I’m in no need of a fruitless medal for survival ship
thank you my dear anyway
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The snow is a white blanket but alas a blanket is the worriers best friend in a cool night; and even if he is luckyenough to shoot enough game to satisfy hiswants, he'll get sick of one diet in a shorttime. Best he knows the fruit and berries his worries in the comfort of his own abode
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