Forum Replies Created
January 12, 2018 at 11:48 pm in reply to: Locally advanced non-resectable cholangiocarcinoma, seeking multiple opinions? #96451
Welcome to the discussion board. Your father is so blessed to have such strong family support as he pursues treatment.
Many patients pursue second opinions. There are several ways I know of to go about this. First, you can raise the idea with your current doctor, and enlist his or her help. A second opinion is a common practice, particularly with a complex diagnosis, so your doctor should be supportive. Or you could ask around to find another cholangiocarcinoma expert, and approach that doctor’s office directly. Or, on the websites for many of the major cancer hospital centers, you can find instructions for requesting a remote second opinion, where you would send all the medical records and scans, and the hospital will organize a review for you. Be sure it is a hospital with expertise with this rare cancer, not all hospitals have this.
Please check your insurance coverage beforehand. For example, my understanding is that some insurers may not cover remote second opinions. (I see you are in Canada where this aspect may work differently.)
Some reasons patients on this board have pursued second opinions include: to confirm the initial diagnosis, to be certain there are no options for surgery or transplant when the cancer is locally confined, and to investigate if there are other treatment options.
For many of us, the initial diagnosis is made via a hospital tumor board, which includes a group of doctors in different specialties, so there have already been multiple experts involved. Cholangiocarcinoma, however, can be hard to diagnose. My case, which was fairly straightforward, entailed having the scans read by two sets of radiologists, and then multiple tries with various stains to figure out a biopsy sample.
As you read through the patient stories on this board, you will see the common thread of families experiencing an unexpected diagnosis of a cancer we have never heard of. You will also see there is much hope, with the numbers of treatments expanding every year.
Your family picture is lovely.
Please keep us posted on your father’s progress, and be sure to look through the many resources on the Foundation’s website.
I had not come across this treatment but looked at the company website. According to the website, the treatment is still under development and has not yet undergone formal (e.g., randomized) clinical trials. The website states it has been given to 26 patients with various cancers and stages under “compassionate use-type scenarios.” The website states the treatment appears well-tolerated by these patients but it does not provide clinical data on effectiveness.
CCA is not mentioned by name as a cancer involved in its 26 patients. Have you heard this treatment has been tried for a CCA patient?
I wanted to add a point to the info I provided below. Post-surgery chemo or chemo radiation regimens (the medical term is “adjuvant” treatment) intended to avoid recurrence generally are only offered for a limited time period just after surgery. For example, for the BILCAP trial, this limit for starting treatment was 12 weeks after surgery while for the regimen prescribed for me, the initial study had a limit of 56 days after surgery to be eligible.
For this reason, I would like to clarify that advice “not to rush” really does not apply when one is considering post-surgical adjuvant treatment. In this case, time is of the essence to determine if such treatment makes sense and then to get started.
It is so positive that your mother was able have surgery and that she has had such a smooth recovery.
Take care, Regards, Mary
Welcome to our discussion board. I am sorry to learn of your mother’s diagnosis.
Until recently, the medical profession did not have strong statistical evidence that chemo or radiation given after surgery offered a benefit in delaying or avoiding recurrence of CCA. There were however a number of small scale studies suggesting benefits to different post-surgery chemo or chemo radiation treatments, particularly for patients with high risk features to their cancer, and the practice of many doctors in the U.S. has been to offer the option of post-surgery treatment to patients.
This past year, however, a new and large study undertaken in Britain showed an important survival benefit for patients treated with an oral chemo – capecitabine – after surgery. The study is referred to as “BILCAP” and you can read about it using an internet search.
I have started to come across patients in the U.S. who are following this treatment after surgery, so it appears the medical profession here took notice of BILCAP.
In my own case, I was treated after surgery with chemo and radiation, based on a regimen in one of the earlier small studies. While every patient has his or her own response to treatment, in my case, I have been in remission so far for 27 months, even though my tumor was also large and had other high risk features.
I would recommend that your mother ask her doctor about the advisability of post-surgery treatment and make reference to the BILCAP study, which got a fair degree of international attention. Doctors look at a number of factors in deciding about treatments, including whether the patient will tolerate it well. Your mother may also wish to seek a second medical opinion on this question.
Please take your advice from experienced medical professionals who know this cancer – it is a rare one, so important to ask if a cancer doctor has experience. This discussion board is a forum for patients and caregivers, so we are not dispensing medical advice, but you can read the stories and experiences of others on the cholangiocarcinoma journey.
Please pass best wishes to your mother,
Thank you for your thoughts on doctors. Very helpful.
The criteria you mention are ones in my experience that you discover as you work with a doctor. Are there ways to evaluate these criteria before getting started with a new doctor, other than the websites that rate doctors? What if the doctor is in a distant location? And how have you factored expertise into the equation, given this is a rare cancer? I ask because as a patient, I would gladly put up with Dr. Curmudgeon if such a doctor had a higher likelihood of being successful with my illness.
I don’t have personal experience with Dr. Schroff or MD Anderson, so cannot be of help there.
I did want to make an observation about the reviews of doctors on the websites that do this.
For myself, my first criterion is the doctor knows what he or she is doing, and and can keep me healthy. My second criterion is that communication between us is adequate, e.g., the doctor listens to me, explains things sufficiently, is not impossible to get in touch with. The doctor has to be great in the first criterion and not horrible in the second, in my personal way of thinking about this. Each patient may view this differently.
Looking at the review sites, the expertise of the doctor is not always commented on. Sometimes patients get riled up over non-medical things – “we had to wait an hour” or “the billing was wrong” and then give one star because they are annoyed. For me personally, such problems can be forgiven if the doctor is expert and is going to keep me well.
With cancer, I would add, it also helps if the doctor practices where there is a great support system, because cancer usually demands a team approach. At one point, a cholangio doctor was recommended to me who is part of a stand-alone gastroenterology practice that from its website seemed not to be affiliated with a major cancer center. The individual has a terrific bio, but I wondered how it would work with no tumor board or pathology department lurking in the background.
Best wishes that you and your mom find just the right doctor.
This is such positive news for Katherine. Thank you for sharing it with us.
Thanks for your update.
You asked about the mechanics of the board. What you post is seen by all readers. If you want to reach out to a specific board member, there is a private message function which you can access by clicking on the “send a message” button under the board member’s user name on the left-hand side of the message.
There is a huge variety of experiences with this cancer, so by posting so all can see your message, it is more likely someone who has experience with your area of concern will see and can answer.
Gemcitabine with cisplatin is a common first-line treatment. The biopsy and genomic testing your doctors are recommending is certainly the wave of the future now that precision medicine is becoming a mantra for cancer treatment. If you are concerned by the high cost of potential off-label medications, please be aware that some (not all) pharmaceutical companies offer financial assistance to qualifying patients, so that is worth checking out on the company websites.
Whether to have a second opinion is up to you. There are merits to this with a complex cancer. Reflecting on postings on this board, some examples of reasons for pursuing a second opinion have been (1) to be absolutely certain whether or not surgery is an option and (2) when needing to choose among treatment options, e.g., if there are multiple clinical trial options.
Your family members are spot-on correct in my humble view in encouraging that you take a strong role as self-advocate. I felt like having this rare cancer sent me back to school, as I had to acquire a lot of information to look into treatment options, and to deal with medical professionals I encountered who have not seen many patients with my cancer.
I hope you are still considering attending the Cholangiocarcinoma Foundation annual conference at the end of the month.
Take care, regards, Mary
CA 19-9 (carbohydrate antigen 19-9) refers to a blood test that measures presence in your blood of a protein that is shed by cells. The protein can be excessively shed by tumor cells of several cancers including cholangiocarcinoma, so the test is used to help diagnose and monitor our cancer.
CA 19-9 is regularly measured for patients undergoing treatments and those being watched for recurrence. The number can fluctuate, and it can be elevated for non-cancer reasons such as inflammation in the bile ducts or pancreas. To give an example, in my own case, my CA 19-9 steadily rose by small bits throughout my chemo and radiation. I was concerned but one of my doctors told me that he did not worry about CA 19-9 unless there was a “doubling or tripling.”
If your doctors are worried by changes in your CA 19-9, they may repeat the test or send you for follow-up testing, e.g., a scan. But as has been reported by other patients, usually small movements in the test result are not viewed as overly concerning.
Happy New Year! I was happy to hear that your spouse got through his surgery.
I went back and looked at my blood test results just after my (resection) surgery, and they were off kilter for a few days, eventually settling down. Whipple is a very major surgery, so it may take some days for the plumbing to get back to more normal operation. The doctors and nurses should be able to tell you if the elevated bilirubin is just part of normal recovery or something that needs monitoring.
Fingers crossed for a comfortable recovery. I hope the current miserable East Coast weather is not affecting you too much as you cope with your husband’s hospital stay.
It is great to hear from you and thank you for dropping in. Happy New Year!
My time on the board only goes back two years. Several of our beloved moderators – Lainy, Marion and Darla – “retired” this past year, but I believe they still look in from time to time and I hope they see your greeting.
The patients, families and caregivers who use the discussion board find the patient stories of immense help and comfort, even ones posted years ago. Your contributions to our community live on here, and I hope you will continue to visit.
I am sorry your visit to the gastroenterologist was not more productive. My guess is the subsequent meetings with the oncologist and radiation doctor will be more action-oriented and give you options for a path forward.
My impression reading this board is that this cancer is highly variable and the range of treatments out there reflects that CCA manifests itself a little differently in each case. Your doctors will try to tailor your treatment to your particular circumstances, and will take your own views into account. The fact that there are different treatment approaches in no way suggests that doctors are unclear how to manage it. You may, however, want to consider seeking a second opinion, which is generally a good strategy when facing a complex illness.
Take any survival numbers thrown at you with a HUGE grain of salt. This cancer is so rare that there just aren’t very good numbers to make any kind of prediction with. Your CCA seems to have been caught early (no nodes and no spread) and you are being seen at a major cancer center with good experience. These factors bode well for you.
It was a great suggestion that you consider coming to the Cholangiocarcinoma Foundation Annual Conference. It is an opportunity to hear the latest from the leading doctors and researchers, and to meet other patients. The information on the conference is available on this website. I hope we will see you in Salt Lake City.
Let us know how your next round of consults goes.
Welcome to our discussion board. Please take a look throughout the Foundation website as there is a wealth of good information for patients and their families.
Please also use the discussion board search engine, for example, to turn up other patient experiences with the treatments you will be having.
Your frustration having a new cancer to contend with is understandable. CCA is a rare one, which creates an additional challenge in finding information and experienced medical caregivers. It sounds like you are in good hands at Mayo. The team approach you described is ideal for this cancer. It is a hopeful time with many new treatments being developed and tested. You may wish to ask your medical team about clinical trials and also if they recommend that you have further genomic testing done.
I hope you have a good meeting at Mayo. Please keep us posted.
Regards, MaryJanuary 1, 2018 at 11:05 am in reply to: Scalp recurrence of cholangiocarcinoma after curative hepatectomy: A report of t #96367
Thank you Gavin for all the work you do to search the medical literature.
When I looked at this article, my initial reaction was “Yikes, you can get mets in your scalp?” But this is of course extremely rare, in fact so very rare that the authors were able to get a publication out of it. There are other articles I have seen, some of which Gavin has posted, that also describe cases of a patient with an extremely unusual location of CCA mets.
For me, the lesson in this is that with CCA, as a patient I must be very attentive to what is going on with my body. Any bothersome pain, new symptom or other factor that seems out of place should be on my list of questions when I see my doctors. Chances are excellent that I will NOT end up starring in some doctor’s medical journal article as an unusual case, but we can all have better peace of mind by asking questions to our medical providers about any concerns that come up.
Happy New Year everyone!
I hope this glitch has a happy ending and did not delay your treatment.
I have not had this exact experience but I know there is a lot of behind the scenes coordination between hospitals and insurers. Patients don’t hear much about this unless something falls through the cracks.
Let’s hope this was a one-time experience.
Wishing you and your family the best for a Happy New Year.