Newly Diagnosed in Detroit – looking for advice
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After a long talk with my mom’s oncologist today we did another CT Scan and all the spots that previously showed in the liver are gone, they had told us there was a small chance the spots could be infection, but thought the probability was low after confirmation from MRI.
So good news! She is now a candidate for whipple which leads us to soooo many more questions. If anyone has any advice please chime in. What questions should we ask the surgeon, how do we know who is experienced, do they ever do this laparoscopically?
Hi Chris,
I am sorry to hear of your Mother’s diagnosis. We must live near. By Brother was diagnosed with left intrahepatic cholangiocarcinoma in August 2018. We initially were at Henry Ford but at that time Diagnosis was unclear. My brother went to UofM and was diagnosed there. He had an extensive 13 hour surgery (Not whipple as pancreas was not involved) which entailed left liver resection and hepaticojejenostomy. We were very pleased by the hepatobiliary surgery team there , his surgeon was Dr. James Knol. Unfortunately pathology showed positive microscopic cancer in 1 lymph node, staging hime stave IV N1, M0. We were not as impressed by the oncologist at UofM and decided to get a second opinion at Memorial Sloan Kettering NY by Dr. Abu-Alfa. He and his team were Excellent and if you are able to get in in to see him I highly recommend it. My brother had no visible growth after surgical resection, therefore was not a candidate for a clinical trial. Based on Abu-Alfa’s recommendation, we decided to meet with Dr. Philip Phillips at Karmano’s Cancer Center, which is where my brother is currently receiving his chemo. We are extremely pleased with Dr. Philips and the entire staff (just saw him yesterday, his apts and chemo are on Tuesdays). He is currently in his 3rd cycle of Gem-cis and tolerating it well. Has first imaging scheduled October 13th, praying that no growth is found. Please let me know if I can help with anything. Hang in there, its a long road and very frustrating at times. I recommend keep searching until you find a medical team that you feel very confident and comfortable with.
Elena
Hi Chris,
Welcome to our community. I am sorry to hear of your Mom’s diagnosis.
Regarding options for diagnosis and treatment in the Midwest, we have had patients on the board treated at Cleveland Clinic, Mayo and University of Chicago. There are other major cancer hospitals with experience with cholangiocarcinoma in the Midwest, as well.
It is important, as you have done, to get a good surgical opinion from a very experienced liver surgeon if the cancer spread is confined to the liver. In this case of a distal cholangiocarcinoma, this is referencing the possibility of a Whipple combined with liver resection, which may be considered depending on how extensive the mets are. What the surgeon looks at is whether the tumors can be removed leaving behind enough healthy liver to keep your body functioning, whether the tumors are so close to major veins or other geography that would make the surgery too risky, and whether the patient is in good enough health to withstand a very major surgery. Some of the major hospitals will give a second opinion remotely, if you send scans and other records electronically.
Gem-cis is the general first treatment for cholangiocarcinoma when surgery is not possible. In some patients, it may shrink the cancer enough to get to surgery. In others, it can stabilize the cancer for a good period, after which the patient may move to another line of treatment.
As to starting treatment, some of the centers are pickier than others about looking at patients who have started treatment elsewhere. You can check on their policies probably with a phone call. This cancer acts differently in each patient. There is a possibility it could be more aggressive. Your original oncologist might have an opinion on this, and the urgency of starting treatment.
Please stay in touch and send any questions our way. The good news is the research is making progress for this cancer and new treatments are coming on line or are on the horizon, so there is always reason to be hopeful.
Regards, Mary
Fight hard for faster action, and get that genomics (Foundation One) testing ASAP. If she has a mutation type that is favorable to a Keytruda class drug, that is a possible solution. My wife passed away last month of extrahepatic cc after a 4 year battle. Long long story. But I’m afraid my wife’s was caught earlier in the progression based on your description. Ultimately Janet succumbed because there was no drug to treat her mutation type. I’m hoping and praying your mom can get lucky.
Hi all,
I’m writing on behalf of my Mom (68) who was diagnosed a few weeks ago and we have lots of questions for anyone that would like to chime in with their own experience.
After presenting in the ER at Henry Ford Hospital with extreme pain in her abdomen along with symptoms of stomach flue, but without fever. The team conducted ERCP, and a restriction of the bile duct was found. A biopsy was taken and a metallic stent installed. The biopsy was positive for cholangiocarcinoma (extrahepatic or distal).
Some spots in the liver were found on CT and confirmed via MRI to be metastasis. Approximately a dozen nodules up to 12mm were found. No spread was noted elsewhere.
The surgical oncologist who was hoping that with no spread would recommend whipple as my mom is otherwise very healthy, however our understanding is he would not perform this with metastasis as no possibility to cure – does anyone have any reason to believe there is other options? The team at HFHS is recommending standard of care of gemcitabine and cisplatin (her port was installed today).
We’ve been calling around and pushing to get in somewhere else for 2nd opinion at University of Michigan, MD Anderson, and locally here at Karmanos and even a consultation with Dr Berri at Ascension to discuss HIPEC. I understand HIPEC is really for metastasis in the peritoneum, which was not noted in CT or MRI, and only performed along with resection.
Henry Ford also had no suggestion for radiation, so they did not bring in the radiation oncologist to meet with us. Does this make sense? My understanding is she is not a good candidate due to the number of nodules in the liver.
Unless things start moving soon, the earliest we can get in to University of Michigan is 2 weeks, and not until January for MD Anderson. Does anyone think we should get second opinion before beginning first line treatment? We’re also going back to Henry Ford tomorrow to figure out what needs to be done to send samples for genomic testing. My mom will likely not consider trials that are not near home (Detroit) or family (Salt Lake, Seattle).
Obviously we know that there’s a tough road ahead and the outlook is not good. Any thoughts or comments on course of action are appreciated!
-Chris
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