Forum Replies Created
Welcome to the discussion board. It is great you found this community. One aspect of a rare cancer is that patients and family members end up doing a lot of research and legwork. Your background as a nurse is an incredible asset for your brother.
I think insurance policies vary. The insurance I have is with one of the big companies and does not cover genetic testing for most cancers – it is viewed as “investigational” rather than “medically necessary.” My impression however is that some insurers might cover it, maybe needing the physician to explain why it is urgently needed, so it is worth checking. My guess is these policies will eventually become more favorable given the trend toward personalized cancer treatment.
As you have probably already found, the companies that perform the testing such as Foundation One do offer some financial assistance to qualifying patients.
Welcome to the discussion board. I hope you have also found your way to the other sections of the Foundation website that contain information and resources, especially valuable for new patients.
Your story struck a chord with me. I was initially told my large, centrally located ICC was inoperable by a major hospital tumor board, but was lucky when a doctor involved in my diagnosis reached out to another surgeon willing to operate. It is important to get good surgical opinion(s) early on especially if your diagnosis shows a single tumor in the liver that has not spread. In my case, my surgery was a “central hepatectomy” which is a less usual form of resection.
Reading patient experiences on this board was really helpful to me to figure out what I needed to do and what to expect. Please post any questions or concerns you encounter – this board brings together many patients and caregivers with a wealth of experience with this rare cancer.
It is good to hear that your mother-in-law is doing well and tolerating her treatment. I agree it does seem strange that the doctor is trying to boost blood counts that appear to be within acceptable levels – worthwhile to question this with the doctor or nurse at the next opportunity.
You mentioned your mother-in-law has been diagnosed with intrahepatic CCA, with multiple tumors in both lobes of her liver. You have not mentioned any further spreading. If I understand this correctly, she is in an advantageous situation as regards treatment. Hopefully her treatment can keep things controlled and stable, or even open the door for other treatments that are also life-extending with good quality of life.
Abandoning “modern medicine” carries a risk of losing control of CCA. Because CCA has potential to move quickly, foregoing what her doctors are recommending for a few months to try an unproven treatment could have unfortunate consequences, particularly since from what you describe, she seems stable at the moment.
You mentioned concerns about developing a second cancer. This is not misplaced, cases do occur although only rarely. I looked at this for myself wondering about the consequences of having chemo, radiation and lots of scans. I concluded for myself that it is far more urgent that I address my CCA now rather than worrying about an unlikely adverse impact that usually does not materialize for a decade out plus or minus. Each person assesses risk in his or her own way.
Fingers crossed for good scan results and treatment success for your mother-in-law.
It is good to hear from you, and that your husband has responded so well to treatment. You are right to dismiss your radiologist’s guesstimate regarding 18 months. As you know from reading this board, there is huge variation among patient experiences so averages are not very predictive. Also, my understanding is that the prognosis resets a bit — in a favorable way — for patients who have a good period of doing well under or after treatment.
(If you are interested in this last point, you can find articles by searching “Cholangiocarcinoma” and “conditional probability” – the articles mainly consider resection but the principle should hold for everyone.)
Keeping abreast of treatment options is very important with this cancer, as you point out.
Please continue to keep us updated, this information is so helpful for other patients looking into treatment options.
Regards, MaryAugust 4, 2017 at 5:51 pm in reply to: Chemo Articles Cited in PubMed (National Library of Medicine) #95196
Thank you for posting these links. It is positive to see the growing interest by researchers in our rare cancer.
Cholangiocarcinoma is not considered a disease that is inherited. Below is a site that explains this. It does say that family members may have an increased risk. I have read anecdotally about one or two cases where two persons in the same family had CCA, but such cases seem very rare.
I am not a science person, but it seems to me that in a case where two family members share an illness, the question is out there whether there is a genetic factor or something else that is shared, such as an environmental factor, for example, the CCA cases related to raw fish consumption in Asia.
It is good to hear that the tumor marker is moving downward. Hopefully this is a preview of a good news scan. Please let us know how that goes.
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.