Yet another new diagnosis :-(
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A huge thank you to those who have responded to my post. This discussion board is so helpful in connecting us to the cholangio community. Bob has had a slight setback that has postponed our first fact-finding appointment with the oncologist in Boise (he developed acute pancreatitis as a result of the ERCP he had on 5 Sept. and ended up in the hospital for 3 nights). The oncologist appointment will be tomorrow, 19 Sept . We will digest the info we get from said appointment and from there, proceed to a second opinion at a comprehensive cancer center.
Reading so many stories of others with the disease has actually been encouraging. Instead of his dying from this disease within months, I see years, many of them good years, ahead of us. Thank you for that light in this murky world in which we have found ourselves. Some of that murk is receding and a path is slowly emerging. . .
Hello,
Thanks for joining our community, the best place to see a wide range of patients experiences.I know the frantic pace of diagnosis, and make sure there is a biopsy (done through ERCP) and confirmation report from pathologist that you understand well. There is so much new terminology that if you are informed it makes discussions with the medical team easier. Start getting organized with the medical paperwork including scans, blood results and anything from the hospital and doctor’s visits to take with you on all appointments. I recommend getting at least 3 different oncologists input, a surgeon and you will need a very competent GI doctor is stents are required. The most important as a caretaker is being informed, taking part in decision process, and being very clear on what is stated by doctor and medical staff as there is a lot to do.
Take care of yourself also, which makes you more effective to help.
All the best on this journey.
I don’t know where in Idaho you live, but we live in Spokane, WA and you can get info on which doctors we saw/see from my Intro post at https://cholangiocarcinoma.org/db/topic/my-42-year-old-husband/
His amazing surgeon was Dr. Juan Mejia at Sacred Heart Medical center in Spokane, WA. We have also seen docs at Seattle Cancer Care Alliance, Swedish Medical Center and UW Medical Center (all in Seattle). I have 2 family members who loved their treatment at the Mountain States Tumor Institute in Boise (both for breast cancer though).
I hope you are able to use the amazing info you can find on this site! Feel free to message me with any questions,
Victoria
If it hasn’t spread I would focus my energy on finding a surgeon, high and low. Regardless of what your doctors are telling you as to whether it’s operable or not. From what I’ve seen surgery is confidence and interpretation, so you need to find that surgeon that says ‘I can get that’.
You’re going to have to put a package together of all the medical info, files, cat scans, etc. This is time consuming and frustrate but it’s ultra important, because when you talk to someone they are going to want this information and the quicker you are able to provide it the better.
You never go to the doctor or hospital without getting a copy of what they did that day. You will end up providing the same information to the same doctor’s office multiple times (you just will), and the easier you make it on yourself to do this the better.
Make sure you get phone numbers and names of people that can help. This battle is as much administrative red-tape fight as it is medical.
Good luck,
Joe
Hi Idaho,
I am so sorry to learn that your husband was diagnosed with cholangiocarcinoma, but happy you have found our community. If you have not already done so, please take a look at the many resources available for newly diagnosed patients on the Cholangiocarcinoma Foundation website.
From what you describe, it is important to find a major cancer center with experience with this rare cancer, to confirm your husband’s diagnosis and develop a treatment plan. Once there is a treatment plan this can often be followed closer to home with the cancer center experts working collaboratively with more local medical providers. For example, in my own case (I am a patient), my treatments have been recommended by Johns Hopkins in Baltimore, but I have received most of my care close to home. At major medical centers, patient cases are reviewed by a “tumor board” which is a committee of medical experts of different specialties, including usually surgeon(s), oncologist(s), interventional radiologist(s), pathologist(s) and/or hepatologist(s). Cholangiocarcinoma is complex and in some cases difficult to treat, so multidisciplinary review is important.
You mentioned that, thankfully, no metastases were found. In such cases, it is important to get surgical advice from surgeons familiar with this cancer. Surgical removal of the cancer is a potentially curative treatment, but time is of the essence in finding out if your husband’s case is operable.
Here is information on major cancer hospitals:
https://www.cancer.gov/research/nci-role/cancer-centers/find
And here is a section of the Foundation’s website in support of our nation’s heroic Vietnam vets, a group who seems to be more susceptible to this cancer than the general population – reflecting the higher risk in Southeast Asia.
https://cholangiocarcinoma.org/vietnam-veterans/
Please stay in touch, and send any questions our way. This is a very rare cancer, and you will come to find that some of the medical providers you may encounter along the way have little experience. I always ask any doctor I see how many other cholangiocarcinoma patients they have treated. Please also know that this is a hopeful time for our community, as multiple new treatments are on the horizon or in development.
Regards, Mary
My husband, age 71, Vietnam Vet, fit and healthy until a few weeks ago, was diagnosed last week with cholangiocarcinoma. The pathology was confirmed just yesterday. We do not yet know what stage, but have been informed that it has not metastasized. We live in Idaho. We are researching the optimal cancer center for him Any suggestions would be appreciated.
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