October 9, 2017 at 5:21 pm #95808bglassModerator
Thank you for your note and comments. Your points about the difficulty of dealing with a rare cancer when you live in a rural area really highlight the additional challenges faced.
Two areas that seem especially concerning to me regarding access are (1) initial treatment decisions and (2) clinical trials.
Patients whose initial cancer seems just to be localized ideally will first investigate if they are possible surgical or transplant candidates. This judgment should be made by a multidisciplinary group of medical professionals with expertise in CCA. The 2005 study I attached earlier noted that low-volume (e.g., community) hospitals reported performing on average just one Medicare-funded liver resection per year, a measure of their experience with this surgery. So if your tumor board is at the local hospital and not at a major cancer center, my guess is you are more likely to be deemed inoperable since there is a chance the surgeon making the judgment does not have much specific experience with a complex resection surgery. This is why our colleagues on this board urge new patients to seek multiple surgical opinions from doctors at major centers, which often can be done remotely.
My example relates to resections but there may be similar concerns felt by patients seeking other forms of treatment using local care providers who do not see many CCA patients.
Regarding trials, many (not all) of the clinical trials operate out of the major cancer centers, and they often require a lot of direct contact with patients which as you note can be a burden for rural residents who have to navigate distant hospital bureaucracies. One exception is the NCI-MATCH set of trials, which encourages participation by community hospitals and physicians. I looked at the website info for NCI-MATCH, and there seem to be about 70 possible locations in California alone. But this is not usually the case.
The materials and info on the Cholangiocarcinoma Foundation website are hopefully a help to patients in rural or more isolated areas who have fewer local resources to navigate a rare cancer diagnosis.
October 9, 2017 at 4:05 pm #95794beatrizParticipant
- This reply was modified 3 years ago by bglass.
Hi Mary and Gavin,
I live in a rural area in Southern California (4 hours aways from Los Angeles) and yes people living in rural area have more obstacles to overcome when in comes to treatment period! it is even more complex when it involves rare cancers like cholangiocarcinoma because you have to deal with the primary doctors who may or may not refer you, then deal with the insurance, then making the appointment with the major cancer center (for us it was USC), then dealing with the whole cancer language, protocols, etc….and to get things more complicated if English is not the first language can you imagine trying to read about the clinical trials? or how to qualify for it.
The whole thing is so complicated and complex that now wonder there is a big “gap” across the different patient categories (economic backgrounds, age, gender, language, etc…) that yes we are leaving hundreds of patients behind because of lack of information and above all access!October 8, 2017 at 8:22 pm #95777bglassModerator
This piece is really interesting, thank you for posting it.
I recalled a similar study done for intrahepatic cholangiocarcinoma patients in Texas in the United States. In investigating possible bias against rural residents in terms of length of time to start treatment, the researchers concluded that lower median household income was the more probable factor behind treatment delays, not rural residence. The article appears in the Journal of Surgical Oncology, May 30, 2014 issue.
I think a big issue if you have a rare cancer and live in a rural area is access to a major cancer center experienced in your particular cancer. If you have CCA, it is challenging if you live in a part of the country that is distant from a major cancer hospital. Travel for treatment is expensive, not covered by insurance, disruptive and just plain tough if you are not feeling well. Yet research tends to point to better outcomes if you are treated in a major cancer center that sees a lot of patients like you. We see many colleagues and their caregivers traveling considerable distances to pursue care. Often, however, patients can work out a collaboration between the major center and a local medical care provider so that some of the treatment and monitoring can be done locally – the best of both worlds.
Here is a somewhat old (2005) article describing differences in outcomes for liver and pancreatic cancer surgeries, depending on the hospitals’ volume (frequency) of these procedures. There is an interesting discussion section at the end featuring some of the more well-known surgeons who treat cholangiocarcinoma.
Regards, MaryOctober 8, 2017 at 11:35 am #95776gavinModerator
‘Rural cancer riddle’ revealed by University of Aberdeen researchers
Found this interesting from Scotland. We have a lot of rural areas and Islands here and many patients will be quite far away from major hospitals, treatment centres etc. I would guess that the data from this study could be applied to any country though.
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