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It is my understanding that metastatic tumors have both common elements and differing elements with the primary tumor(s), and hence may respond differently to treatment. I believe doctors will tend to assume that new lesions appearing after a primary cancer is diagnosed are metastases of the primary cancer. And CCA can metastasize to the lungs. It is always possible that there is a second primary cancer afoot, but my understanding is this would be a rare event.
I am sorry to hear that your husband is not feeling well. You mentioned your oncologist seemed somber. I was wondering how detailed he or she is being with you, in outlining possible scenarios. Sometimes doctors have to be pushed to give this sort of information.
Exploring palliative and hospice options early can be helpful in making decisions. With this cancer presenting so many twists and turns, one has to prepare for a variety of possibilities. I know this is hard when just getting through the day-to-day can be draining. Even while hoping for the best and staying positive, however, it is still good to think about future plans – if you think through and consider care options that turn out to be unneeded at this time, no harm is done and you are more prepared for whatever the future brings.
If you have not found this posting yet, our board colleague Rangani posted some links to excellent materials on end-of-life care for cancer patients. I copied the posting below – his message has various links. Even if this information is not needed at this time, it may still be helpful in considering possible future situations.
My thoughts and prayers are with your husband, you and your family as you navigate this most difficult time. Hopefully his current treatment will show positive results. Please keep us updated.
Your point is an important one. If CA 19-9 is being monitored and it rises (per one of my doctors, doubling or tripling is the warning bell), then an intense effort should kick in to figure out why. BUT, if CA 19-9 stays in the normal range, it is not a guarantee that all is well. This is why — as you so rightly point out — the broad range of indicators needs to be carefully watched, including periodic scans and patient symptoms.
I wish there was more effort by the doctors and researchers to define what surveillance should be for this cancer given how difficult it can be to detect and monitor.
My CA 19-9 was 115 at diagnosis, then 16 then 6 after resection. It started climbing with subsequent chemo and especially radiation up to 14, then has eased back to a range between 6 and 8.
I am going to get a little past my own comprehension of the science now. There are different subgroups within people who express CA-19-9, and the average or median CA-19-9 level varies among these subgroups. My CA-19-9 of 6 could be just as normal as someone else’s 22. So my understanding is doctors look at what is normal for the individual patient rather than comparing across patients. I was told by an oncologist that my CA 19-9 runs low and for this reason might not be as good an indicator as with someone whose number varies more widely. I was also told that doubling or tripling would be the tripwire to investigate if something concerning is afoot.
CA 19-9 can rise with treatment, whether chemo or radiation. In my case it more than doubled although still below the upper limit. It can also rise with progression or recurrence; for this reason doctors look at CA-19-9 as an indicator but look at other factors as well.
This essay is a gem, but I thought I would summarize Dr. Gould’s observation on survival data for those who find this essay quite lengthy.
Dr. Gould notes that the median survival of eight months that he read about related to his own cancer diagnosis did NOT mean “you have about eight months to live.” Instead, it means fifty percent of persons studied with that diagnosis survived more than eight months. Moreover, within that 50 percent, there were many who survived much longer than the median, for example for several years. Knowing this, he focused on thinking about factors related to his own case that gave him hope of being in this fifty percent, such as having good medical treatment and decided that he had a good shot at living well beyond the eight month statistic.
He also points out that every improvement in care pushes the survival curve out, offering additional reason for hope.
To anyone worrying about survival statistics:
If you have patience for a 4-page read, below is a link to a famous essay by Stephen Jay Gould on what life expectancy numbers mean for cancer patients. Dr. Gould was a Harvard paleontologist who was diagnosed with mesothelioma in 1982. He looked it up in the library (this was before google and Wikipedia) and saw the median life expectancy was eight months. In his essay, Dr. Gould explains very eloquently the hope he saw in this number. He went on to live another 20 years.
The article below summarizes a number of liver-directed therapies including studies regarding their results. The text discusses both treatments you are considering. The studies cited involve small numbers of patients, so indicated results may not fully predict what would happen in a large population.
I do not have direct experience with either, but other board members who have may respond.
Best wishes as you investigate treatment options.
Welcome to the discussion board. It is good to hear your mother is feeling better. If you haven’t already found it, there is a great deal of good information on this website for newly diagnosed patients and their caregivers.
You ask the most difficult question, namely about prognosis. This is a very rare cancer and most doctors outside of the few true experts have not seen many pCCA patients – hence, they may not have experience with sufficient numbers of patients that could feed well-informed guidance on what to expect. There are research studies you can find on-line that look at survival, but most also suffer from small numbers and many look at subsets of patients who may not match your mother’s profile. Organizations such as the American Cancer Association publish historical data that likely understate survival since treatment today is better than in the past. So while you may look at some estimates of survival, they are not going to be precise plus they are averages of patients who are all over the map.
Many patients and caregivers have posted their histories on this discussion board. I found it most helpful to find and read cases similar to mine to get a sense of what to expect. Even then, you will see there is a broad range of experiences. For example, there are a good number of Stage III and IV patients who have done well and substantially exceeded what the data might suggest. So there is much reason for hope.
That said, this is a tough cancer and it is important to be well-informed. Ask a lot of questions with medical providers and push them to find you the answers you need. This cancer turns us into students and researchers.
This board is a great place to find information and comfort. Best wishes and prayers as you support your mother’s treatment and care.
Regards, MaryJuly 13, 2017 at 4:51 pm in reply to: Hello from Houston, first post, sister with Cholangio #95263
Please accept my condolences and prayers. Myrna was blessed to have such a devoted and caring family and circle of friends to bring comfort and support.
Regards, MaryJuly 10, 2017 at 6:11 pm in reply to: Hello from Houston, first post, sister with Cholangio #95254
It sounds from your description that Myrna is receiving good care. Prayers and best wishes that her progress continues.
Regards, MaryJuly 9, 2017 at 11:26 pm in reply to: Hello from Houston, first post, sister with Cholangio #95249
This discussion among mostly caregivers raises the following thought for me.
I guess each family dynamic is different. My doctors have outlined treatment options, and I enjoy tremendous support and counsel from family members and friends. So far, however, my treatment decisions have been 100% taken by me. But there is always the possibility that I will need to rely more on others to take a more direct role in making treatment decisions for me in the future. I don’t look forward to that scenario.
One of the horrible aspects of cancer is it makes you feel a loss of control over your life. Speaking as a patient, I would find it important that family members and caregivers not inadvertently manage things in a way that would make me feel like I have little say. I know this is hard if a patient is very ill, but preserving some sense of control would be valuable to my own well-being should that day come.
Caregivers are heroes and make all the difference to patients, but at the same time as a patient it can be hard to speak up when you don’t feel well and life is spinning out of control. That was behind my earlier point about listening hard to patients for spoken and unspoken signals on treatment preferences.
Regards, MaryJuly 9, 2017 at 8:42 pm in reply to: Hello from Houston, first post, sister with Cholangio #95247
This chain has brought up so many fundamental questions that cancer patients and their families and caregivers confront.
Let me add a patient perspective to the mix.
Marion is spot on that the patient’s wishes regarding whether to pursue aggressive treatment (or not) must be listened to. Caregivers and family members are heroic in their support to a loved one with cancer, but please listen hard for and take note of stated and unstated signals regarding treatment preferences. It is also important to insist that doctors give a straight story. Sometimes in an effort to maintain hope, potential negative scenarios are not fully discussed. I sometimes say to my doctors “tell me straight about risks or downsides” and once or twice I heard something different or new in response, information that has helped me make plans for a possible worse case which I hope won’t happen, but I want to be prepared.
The other observation speaking from my own experience is to look into hospice care early. This cancer takes unforeseen twists and turns and knowing as much as possible about all treatment options even the ones we don’t want to think about is important. There seems to be a fair degree of evidence that hospice can extend life in the end stages. It is a standard of care, not an act of giving up, that can help stabilize a patient, and enhance quality of life. In certain cases, patients might stabilize enough to resume treatment. This is not something I thought I would ever have to think about, but it is good to have this information as part of any research being undertaken, just in case the day comes when hospice becomes a consideration.
Jonas, Myrna is so lucky to have you helping her through these difficult times. I hope she regains her strength and well-being.
P.S. As a patient, I want to add a shout out for chemo. Yes it is harsh and difficult, and may not be an appropriate choice for some patients. But chemo has extended life for many CCA patients with side effects that while unpleasant, are tolerable. Some patients become operable after chemo treatment. It is true that other treatments are on the horizon that may someday be more effective and easier to tolerate. In the meantime, chemotherapy is an important tool, and it is helpful for patients to get correct, evidence-based info about their chemo options — information that can address any fears rather than incite more fear.
I am also an ICC patient and have wondered the same thing.
The experience with liver transplant for intrahepatic CCA has not so far been positive. My understanding is that recurrence rates tend to be high, which is problematic given the scarcity of livers for transplant. I believe that doctors strive for resection rather than transplant for ICC as the survival prospects are somewhat better.
There are a number of studies of transplant outcomes where patients who had been diagnosed with hepatocellular carcinoma were discovered after liver transplant to have actually had intrahepatic cholangiocarcinoma. Sadly, a high proportion of these ICC transplant cases experienced recurrence.
I think with time, doctors may get better at identifying subsets of ICC patients who may benefit from a liver transplant, but this is not the case today. This may involve certain patients at a very early stage who undergo a pre-transplant regime of chemo and/or radiation.
Here is an article on the topic.
Best wishes as you pursue treatment options.
It is great to hear you are doing so well.
You asked to hear about experiences with radiation. Here are some observations re my five weeks of IMRT radiation with capecitabine concurrently.
I need to preface this by saying that the center which treated me was wonderful in every way: efficient with caring, patient-oriented staff, top notch doctors and modern facilities. So my description below should not be viewed as in any way complaining about the provider.
I found radiation tougher than chemo. It is logistically different in nearly all aspects. Chemo was once a week with some weeks skipped. Radiation was every day. Chemo appointments were long, usually a couple of hours. Radiation was in and out within 30 minutes. Chemo was slow and nurturing: here is your recliner, have some tea, bring your family, do you want a magazine. Radiation was get down to business fast. Get in there, put on a robe, zapped and done.
The radiation made me tired but it sometimes felt like it was not the treatment, but rather getting myself there every day while I was holding down a job. For me, radiation treatment took some patience – I found the experience a little unnerving til I got used to it.
My treatment center had the patients change into gowns. I usually had one of the last appointments of the day, and the gowns left were either extra small or extra large. I opted for extra large, which made me feel I looked like the school nurse at Hogwarts.
The patients file in and out pretty fast as the treatments last maybe 10-15 minutes from start to finish. When you come in to the treatment room, you first lay on a table on a mold shaped to your body. The technicians move you around until the beams line up to the small tattoo dots that had been placed during the treatment planning session. Once you are in position, they leave the room, a large metal door clicks shut behind them, and they speak to you via speakers in the room.
Soft music played in the background. A large gantry with scanning and treatment functions rotates around you. It looks like a Star Wars weapon. The first step is a scan to be sure everything is lined up correctly, then the treatment itself which involves several passes by the rotating gantry.
In my case, I had to hold my breath during the treatments, which is something the technicians practiced with me until I could time my breathing as needed. I figured out some prayers that matched the timing of the breath holds, which made that aspect easier.
The technicians then tell you they are done, come back in, and help you off the table. At that point, you are finished, get redressed and head home. My abdomen felt warm after treatment and initially I would crave milkshakes and was hitting McDonalds on the way home.
Other than fatigue, which deepened over time and hung on for a few months after, I had a little bit of a reflux problem which responded well to over the counter treatment. No nausea. I generally felt fine during the treatment other than some hand-foot problems from the capecitabine. The radiation lowered my lymphocyte count quite a bit – if I recall correctly to a level considered an adverse event – but it bounced back to normal range within a few months. I was initially concerned about this, but the doctor pointed out that my lymphocytes had not stopped the cancer in the first place so their temporarily lower levels were not something to worry about.
The center where I was treated had a nutritionist on staff who recommended a high protein diet and plenty of water.
That is what I remember. The five weeks were tedious, but I got through it in good shape. It has been 13 months for me since I finished treatment, and I have no regrets.
Hope this is helpful.
I am so sorry to hear of your loss. Thank you for sharing your mother’s picture.