May 22, 2019 at 10:30 am #98652
Just checking in to see if you and your mom have seen progress in having a firm diagnosis and staging. I hope your mother is feeling better.
Take care, regards, MaryMay 13, 2019 at 3:15 pm #98557
She needs to get out of rehab before her GI doctor will see her again, and then he will refer her to an oncologist. Most likely Dr. Gold at Swedish.
I wanted to meet with Dr. Gold so he could look at her results and give me some information, and I was told the patient needs to be healthy enough to come into the office.
I have an appointment with the GI Dr in 2 weeks, then he will tell us next steps. I just am puzzled that no one will really tell me anything, but I am beginning to understand there is so much that isn’t know, that it’s hard to say.
She told me she doesn’t want treatment and just doesn’t want pain.
The board helps me feel less scared, so selfishly it’s nice to talk to someone, thanks MaryMay 13, 2019 at 2:37 pm #98556
Regretfully, this board cannot be of much help in deciphering imaging and pathology reports which requires some medical expertise. Typically the reports describe everything the radiologist or pathologist sees without much interpretation of how significant some of the findings may be. With the input of the oncologist and other specialists, that information feeds into a prognosis and treatment plan. I know it must be really frustrating to lack answers. How soon can your mother get in to see a cancer specialist? Also, it would be good to take written notes with you of all the questions you and your mother have, to be sure you get all the info you need at the appointment. A cancer diagnosis can feel overwhelming and we all have the experience of forgetting to ask important questions during an appointment.
There is a lot of good information on the Cholangiocarcinoma Foundation website for newly diagnosed patients and their caregivers, to help you with your list.
This cancer is really variable. It can be aggressive and spread quickly in some patients; in others it moves slowly. In some patients, it responds well to treatment, while in others less so. Regretfully at this point with the partial information you have, it is probably not very possible to guess how your mother’s case will evolve.
I hope the next days bring some answers. Regards, MaryMay 13, 2019 at 11:51 am #98555
Morning Mary, She felt a lot better after the stent placement. They also took her off the medication they were giving her for her colitis, which is an immune suppressor. I was able to get a copy of the pathology and CT scan report and have been trying to educate myself so I can be informed.
She was feeling quite nervous and stressed out about this, so I decided to tell her what I knew, that it was bile duct cancer, it’s a high grade cancer that spread to her liver, and can’t be surgically removed. From what I think I understand they can’t “stage it” until we run more tests. I also said until you are stronger chemo isn’t an option, and once you get stronger chemo will extend your life.
She said she felt relief since she was worried I was going to “make her” do chemo to get better, but since better isn’t the situation that it’s off the table.
I have lived with her for about 20 years, and I am always telling her to eat right, be active, so she’s healthy, he has a lot of health issues and I am pushing or suggestion thing to make her healthier….. this is where the “make her do chemo comes to play.
This morning she said she’s constipated again, and that isn’t normal for her, 3 months ago this is how this journey all started.
Does anyone know how this illness progresses? Or does it vary for each person? Would anyone be willing to look at the pathology results and CT scan and help me understand what it means?May 13, 2019 at 11:32 am #98554
I hope your mother continues to recover. I hope also that her doctors are providing more clarity regarding her diagnosis and staging. I am not a doctor, but have observed that bile duct blockages in some patients can cause a lot of issues that may calm down with stenting. So hopefully, with the stent placement, her numbers will improve and she will feel better.
This cancer can be hard to diagnose and stage. Fingers crossed that you and your mother get the answers you are looking for quickly.
Take care, regards, MaryMay 10, 2019 at 1:53 pm #98544
Thanks Mary and its so helpful to know that theirs isn’t a rule about tumor growth. I finally got the pathology report and she has high-grade dysplasia adenocarcinoma. He health wouldn’t allow for surgery, she’s considered morbidly obese, has crones, colitis, and is diabetic. Just the few procedures left her very weak. Her tumor markers are very high, her liver function is poor, but I don’t know if that’s because of the blockage or the cancer.
Are there places on the site where there is information about how to look for progression of the disease?May 10, 2019 at 12:44 pm #98543
I am sorry to hear about your mother’s diagnosis and that she is feeling poorly.
We are not medical experts on this website, just patients and caregivers, so cannot give medical advice. The information you provided seems consistent to me with what you were told, namely that more diagnostic information will be required to stage and determine a treatment plan. If the cancer has spread, the initial treatment is usually chemotherapy. If the cancer is just found in the liver/bile ducts, there are more treatment options potentially available but this cancer is complex and your mother’s information would likely need to be looked at by a team (often referred to as a “tumor board”) including an oncologist, surgeon and radiologist, among other specialties. Treatment options would reflect your mother’s health status among other factors. This rare cancer most commonly affects seniors, and many older patients do have success undergoing seemingly demanding cancer treatments including surgery and chemo.
As you will see reading patient stories on this board, cholangiocarcinoma behaves differently in each patient, and experiences are all over the map. In some, it is lazy and slow-developing while for others it can be aggressive and move quickly. At this early stage in diagnosis, my suggestion would be to hope for the best but think your way through how you and your mother would manage different types of scenarios including less optimistic ones.
No one can tell with any certainty what a patient’s life expectancy will be. Doctors will do their best if asked to give an informed answer, but the unexpected can happen. It may be helpful to make quality of life a focus and to be sure that any treatments are well tolerated and any side effects are quickly addressed.
I am happy you and your mom have found our community. Please do take a look at the resources on the Cholangiocarcinoma Foundation website for newly diagnosed patients and their caregivers. If you have questions, send them our way.
Take care, regards, MaryMay 10, 2019 at 11:28 am #98542
Morning everyone, I have been reading posts about this scary disease. I feel frustrated because I can’t get any answers from the medical community. I live is Seattle, and have access to great care. My mom has mobility issues due to poor health and recently went for her routine colonoscopy (the results were fine) but she was jaundice so they ordered additional tests, they thought it might be a stone in the bile duct. Long story short, they confirmed she has bile duct cancer that’s spread to the liver. They placed a plstic stint in her and she is feeling better now. Her tumor markers are high and her liver function tests are poor (prior t stint placement). She was hospitalized after these procedures due to weakness (which I don’t think is cancer related) and now is in “rehab”. The doctor can’t stage this until she comes in, she can come in until she is stronger and “better”. I guess my question is how aggressive is this cancer? If you assume it has spread to the liver and no treatment is used what is the persons life expectancy?
The doctors won’t give me a copy of the pathology report, I have called Dr. Gold’s office at Swedish, and he doesn’t have enough information to give his opinion. I don’t understand that answer. Does she have a month or a year? Any thoughts?
I have access to her medical chart online and this is the details of why they ordered an endoscope and MRI.
1. Dilated intrahepatic and extrahepatic bile ducts, as above.
2. Cholelithiasis and mild gallbladder wall thickening. No
pericholecystic fluid. Negative sonographic Murphy’s sign.
3. Pancreas not well evaluated.
4. Recommend MRI/MRCP to evaluate for distal obstruction. If not
readily available, recommend CT abdomen pelvis.
5. Echogenic kidneys suggesting medical renal disease.
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