Gallbladder Cancer 2023 (All Stages)
Comments
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How many cycles of capecitabine will you receive? With gemcitabine plus cisplatin in the protocol being used, there are 8 cycles, each 21 days long, with infusions on Day 1 and Day 8. I'm so glad you're feeling fairly well!
I'm doing quite well. This week was Day 1 of Cycle 6. I've had no notable side effects, so I'm living my normal life. We have a heat wave coming through for the next 4-5 days, so my outside activities will move to the morning. I'll do some writing in the afternoon. I'm working on narrative essays that stand on their own but will be gathered as a single volume (eventually). This is an act of optimism because it takes years for a book-length manuscript to be "ready," especially when it's not a 9-to-5 job.
I hope that anyone who finds this discussion board will read our experiences and understand that the experience of gallbladder cancer and choices to treat or not treat can be based on something other than the extreme stereotypes.
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This gives me a lot of hope. I was recently diagnosed with Stage IIIB GB Cancer myself...though mine is the rare Small Cell Neuroendocrine type. My oncologist has me on a similar tract of treatment...4 cycles of chemo, recheck and then possibly surgery. I find that there are no real studies, just case studies, as there have only been 126 cases of similar cancer in US in past 10 years. So far tolerating the chemo OK...I had the same thoughts prior to starting...if I only have a year to live and it's 9 months of feeling horrible...is it worth it? But the treatment has eliminated my symptoms...making me feel it's successful...and I seem to have good days with the less good so I have been able to do stuff....what a journey. Thanks for sharing.
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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
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Thanks for the info and research! Curious to know what the Jilin abstract said, or if it's relevant even. I have just completed cycle two of carboplatin (which is similar to cisplatin but less toxic for me since I already have a hearing loss and some early renal failure) and Etoposide. My oncologist is using experiences in treating SCN in other organs as I understand it, though I am his third patient he is treating with it (pretty impressive considering the small numbers). Prior to starting I had just about every test, ultrasound, MRCP, CT scan and PET scan. The PET scan did pick up some extra nodes beyond what showed in the CT. The doc says he will repeat a scan (not sure, likely CT) post 3rd cycle to 'check the progress'. But so far everything seems localized so plan is to proceed with surgery so far. I did have the CA antigen tests but they are low normal so of no use right now (unless they rise, I guess...but the first two were normal). I have DNA/Marker testing out in the universe but I guess it takes a while to get those completed and the results are not back in yet.
Thank you for starting up this forum! This diagnosis is a beast, and facing your own mortality is some days more than I am up for, but having company along the road is helpful and supportive. You are right, one day at a time is pretty much my mantra. I am also trying out a variety of other modalities to help me along the way. I have been attending acupuncture from the start along with the chemo treatments once per week. Lucky that I have the means to pursue that as I feel it has really helped me. Her recommendation is to focus on re-living the feelings and sensations from when I felt most whole and healthy...smells, sounds, tastes, how it felt inside. Which has lead me down a wonderful rediscovery (even though that time was 50 years ago...I am currently 71 years old!)
Have not had any really bad side effects from the chemo (bad reaction to compazine but that's off my list now!) No nausea or vomiting at all...though did lose the hair. Working on options there....have a wig but it makes me feel like a country western singer 🤣 Neutrophils are hanging in there but slight anemia. Lemon or citrus helps with funny mouth taste. When I'm tired I rest, when I feel energy I go, go, go.
Thanks for your input and questions...I am a little behind you in the process. But so happy to know you had the surgery and are on to the next part.
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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.
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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. 💙
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What do you say to someone who has gallbladder cancer?
Everyone is different, I guess, in what we want to hear from people we know who comment on our gallbladder cancer. I have two people who insist on enthusiastically expressing that I'm going to "conquer this." Chances are, I won't. But the problem with telling us their "encouraging" outcome is that it denies us our own feelings. If we are anxious or discouraged, what we want to here is "I hope you will conquer this." That's honest. That's something that we don't have to read research papers to appreciate. Then there are the people with an anecdote of someone who had a very different kind of cancer and is still alive a few years after diagnosis. Still being alive may seem like a very low bar for satisfaction. Using anecdotes like this one is another example of denying us our own legitimate concerns. A few months ago, someone "encouraged" me by saying that she knew someone who had my stage of another kind of cancer and was "doing fine"... but was "emaciated and weak." How is this an appropriate comment?!
We need our doubts and worries validated--not someone piling on with additional doubts and worries, but acknowledging our reality: "I hear your doubts and worries. Please let me know if there are ways I can help you to feel better."
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Your insight is very important to me, because you tell it how it is. I am on a forum on Facebook, and while it can be interesting, there are mostly comments from caretakers who proselytize their religion. The real gbc patients don't share as often.
I am an elder (78 for 4 more weeks) and I am blessed with a strong body. If you saw me, you might be surprised that I have cancer. But of course I have some anxiety about mets, and I've learned that they are often undetected until a tumor grows. I am also very lucky to have a pretty good tolerance for capecitabine, no nausea etc, just mild hand tingling. No hair loss or diarrhea. But will it work?
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Managing stress: My dearest friend just turned 79 and has the energy and stamina of a person much younger. So, I can appreciate that you're making an objective assessment of your strength. Many of my friends tell me that my mental "strength" is getting me through treatment. If there's something to the advice to minimize stress hormones (e.g., adrenaline/epinephrine) when our bodies are already dealing with physical trauma (cancer certainly qualifies), then it's my mental calmness, which I guess is my strength, that is seeing me through this process with manageable side effects. For example, it's possible that my oncologist has recently seen the DNA report for the status of my cancer as of 6 weeks ago and that he won't share those with me until our next scheduled meeting, which is about 10 days from now. I'm okay with that. The findings aren't going to disappear or change our treatment approach in the short term.
My unsolicited point of view on social media participation (relevant to gallbladder cancer discussions): Social media forums tend to become their own culture.
- On Reddit, you expect barely related comments on cancer among the one-liners and comments by those other than the type of people who have been asked to comment. Participants tend to be male and 35 years old or younger. (That's not a verified statistic; it's something someone who spends a lot of time on Reddit told me.) Of course, there are some subreddits that are closely moderated to control the vitriol and irrelevant comments, but I avoid that culture in my personal and online life. There is a r/gallbladdercancer subreddit! It looks like there's very little activity on this subreddit, probably reflecting the fact that the disease is rare and strikes (1) older adults and (2) women more frequently--not the Reddit demographic.
- On Quora, you expect well-informed first-person accounts of experiences or solid medical knowledge, lengthier by far than the average comment length on Reddit. There are far more women (percentage-wise) on Quora than Reddit. The difficulty with finding information on Quora is that it's Q&A based and, therefore, more difficult (IMO) to track current discussions: You always need to enter a search string for what you want to know. Nevertheless, I would be hesitant to participate on Reddit and do participate on Quora for questions about cancer, although questions tend to be repetitive.
- As for Facebook, well you know what that's like. It's been abandoned by those under 40, which is not necessarily a bad thing 😉, but there's implicit permission on Facebook to be hostile, to rant, and to make utterly bizarre comments. (My bias is that "proselytizing" in discussion threads that are about medicine should happen in its own, very separate forum. There, people of like mind can read each other's non-medical perspectives.) The main thing is that there's no way to moderate a Facebook "discussion" so that it remains for and by people with gallbladder cancer.
I think the American Cancer Society's Cancer Survivor's Network discussion boards are the best we can hope for in terms of factual coverage and sharing our triumphs, concerns, and confusions...if only we could attract other gallbladder cancer patients who would be interested in participating, even in only an occasional way. There is at least a way to flag irrelevant and non-supportive posts and responses, should that occur. Patience and intention in all things, I suppose.
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All I know is it's nice to have two other people to chat with about GBC! Irisgal, I hope I get to see 78! One of the things that gets my goat (and this is totally irrational) is that I will likely not reach 79 which is the age my mother, who smoked 3 packs of unfiltered Camels for most of her adult life, died. I have tried to live a lot cleaner all my life...but I guess there is no such thing as fairness, could have died in a car accident or in childbirth or any of the many possible mishaps along the way. So I am just trying to find my healthiest self right now and keep going.
In terms of testing, because I belong to a group that has a portal, my labs pop in there and I am notified, often before the doc looks at them. So though there may be fine points I don't understand, at least I see the results as they are populated. Saves on that stress! Haven't had any follow up radiology testing yet so not sure how stressed I will feel. But I know I wait eagerly to see my CBC, liver and kidney results prior to each chemo treatment.
Right now I am in the part of my cycles where I am 'coming back to myself'. The way the carboplatin and etoposide work is that you have both on day one and then etoposide for two more days then I am off until day 21 when I start again...so I have a pretty good recovery time. I get the treatments T-W-Th and then the injection to stimulate the bone marrow on Fr..and find that by the following Thursday my brain and energy are returning...which gives me a good window on general living! Well, as a newbie, that has worked for the first two cycles. I did have a nurse (lovely woman) tell me not to rest on my laurels, that it would get much worse. 😕Not sure that is helpful....but I have decided to ignore her and live my life as it comes.
The advice I got from the brother of a friend (who has a different kind of cancer but doing both chemo and radiation) is to have patience. I have found that to be the best advice in a way....patience with myself, with the whole medical process and the occasional people along the way who are trying to be helpful but just are not.
One last thing...I have been using a website called CaringBridge to keep all of our friends and family up to date with how things are going. There is also a way to use it to let folks know if you need help with anything (so far, guardian angels have just appeared so haven't needed to use that function). People have to be invited to access it so it's not random and folks can leave comments and encouragement, which I have found very encouraging! It also a way to let people know when you are just 'under the weather' and need space. It is free (though they do ask for donations from time to time but low pressure).
Wishing you all good outcomes from your testing! I hope we all become case studies to encourage those who come behind us.
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You are so right about cancer having nothing to do with what's fair! My mother lived to be 87. Both of my grandmothers lived to be 87. If I were to follow the family "tradition," I'd have to be totally cured of this cancer and have nothing else creep up on me for another 14 years. But as you also point out, if it's not one thing, it's another.
I agree about the benefits of getting test results as soon as they're ready! For my protocol, I have lab work done "stat" and have to wait an hour or more until the CBC results are available before the oncology team decides whether my neutrophils (in particular) are in a healthy range. My injections to compensate for bone marrow challenges in producing white blood cells after infusions are done at home, one per day for 3 days after Day 1 of a cycle and one per day for 7 days after Day 8 of a cycle. Days 1 & 8 are infusion days. The other tests I have before each infusion include a comprehensive metabolic panel, CEA, CA 19-9, magnesium. Every 3 months, I have a chest-to-pelvis CT scan with contrast with the goal of determine whether the cancer has metastasized. And now I have a circulating tumor DNA test for early detection of gallbladder cancer cells in my blood. This last test requires the patience you mention: The first time the test is done, it takes 5-6 weeks to have results (at least 2 weeks of the time is about acquiring the cancer tissue samples that will lead to characterization of the unique signature of my cancer DNA; the rest is the complex process of preparing and analyzing the tissue and the initial blood samples); thereafter, it takes about 2 weeks to get the results. I am assuming that there was still cancer present in my blood 5-6 weeks ago. The "test" will be whether any is detected when I finish with chemotherapy treatment (mid-August!).
Thanks for sharing your use of CaringBridge. I've relied exclusively on email messages. I have a spreadsheet with the names of all the people I will at least occasionally update. I have a column for each "event" (e.g., most recent lab results, new information from my oncologist) and check off which people I inform about that. My sisters want the information for every event. For others, I don't want to be a pest, so I send occasional updates. This is certainly more time-consuming than using CaringBridge! I will check it out and see if it's something that my close friends and family members would use. In this ACS/Cancer Survivors Network for gallbladder cancer, supporting each other with mention of these tools we find is wonderful. Thanks.
Wishing you the best!
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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. ☺️
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Wow! That is just the best news! It's amazing that they have the DNA testing that can trace any speck of cancer and know that you are free and clear! Also reassuring to know that even if the chemo side effects aren't horrible it can still be working!
How long was your recovery from the surgery? I know it is very complex and 'radical'...hoping I will get to undergo a similar procedure if the chemo seems to be working.
Congratulations! What a relief and joy you must feel! Bask in it!
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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.
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The question of how to interpret test results keeps coming up for me. For example (as I posted previously), I had a circulating tumor DNA test done, with blood drawn 2 months ago, analyzed after an examination and identification of cancer cells that were in a removed lymph node during resectioning surgery. The ctDNA test came back negative for my gallbladder cancer. Diving into the information about this kind of test, I found that it has a high accuracy: 90% correct detection of cancer vs. no-cancer status. So, what causes that 10% of errors, mostly false negatives (I'm guessing)? In my case, the phlebotomist who did the blood draws shook the vials quite vigorously to mix the blood with a fixative that would preserve any cancer cells. However, the instructions to the phlebotomist (which came to my house in the package of materials) specifically say not to shake the vials, but only to rock them gently. Did that cause cancer cells to die/disappear?
The standard of care in the U.S. is for gallbladder cancer patients to have a quarterly or semi-annual CT scan with contrast to check for metastasis. Prior to my resectioning surgery, the CT scan came back negative for cancer. Then, the surgeon removed 5 cancerous lymph nodes--another case of a test with a false negative. Now, it's also the case that the radiologists who read these tests use a particular language that is less than definitive: "consistent with..." or "indeterminate" or "likely" or "no findings of..." That is, just because nothing was found doesn't mean that nothing (cancer) exists.
Because no test comes with a guarantee for accuracy of the findings, I continue with chemotherapy treatment through to the end of the 8 cycle protocol (21-day cycles, 2 infusions per cycle). When I have a CT scan at the end of this treatment, what confidence will I have that the radiologist has accurately determined the state of the cancer? If I have another ctDNA test a few months after treatment completion, what confidence will I have that the cancer DNA assessment has been done using viable blood samples (not damaged by agitated shaking)?
I understand why the term "remission" includes the implication that "we haven't found any remaining cancer" and not "there is no cancer." The important thing for me to keep in mind is that we need to deal with this by taking one day at a time. Right here, right now, I feel quite good. I have lots of energy, my mind is clear, I can eat what I want without nausea, I'm sleeping well. Life is good.
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