Intro – Intrahepatic CCA found by coincidence

Hi Derya,

Thank you for your note.  Your news of your mom Hatice’s passing was unexpected and deeply sad for our community.  Please accept my condolences and prayers.  Hatice showed great courage in pursuing her treatment in face of an aggressive cancer, with a determination that was inspiring to all of us.  Your steadfast support for her as she battled this illness no doubt made her journey easier, and I hope you and your family find peace and comfort in the next days and weeks.

Take care, regards, Mary

Hi Derya,

Thank you for the update on your mom.  It is good to hear that her cancer is under control with her current treatment.  I hope the pain management help she is receiving is working well.

We have had a few patients who were treated with radioembolization whose stories are posted here.  If you search “radioembolization” or “SIRT” or “Y90” you can find them, as well as studies on this treatment that Gavin has posted.  This treatment seems to produce positive results for many patients.

Chemotherapy seems to be the most common treatment for advanced cholangiocarcinoma with peritoneal metastasis if HIPEC is not recommended.  Advanced cholangiocarcinoma is also sometimes treated with targeted treatments or immunotherapies.  These treatments are generally only available through clinical trials and may be effective for patients with specific genomic defects or mutations discovered through genomic profile testing.  Your mom had mentioned having this testing – did it identify any actionable mutations?  I found some references to surgery for peritoneal metastasis but they seemed to refer to cases where the cancer location was causing blockages.

From what Hatice has described, her doctors seem to be proactive in identifying treatment options.  I hope her cancer continues to stay under control and that radioembolization produces good results.

Regards, Mary

Hi Hatice,

While not qualified to speculate about medical matters, your recounting of your radiology consult reminds me that diagnosis and treatment planning for our cancer is complex and usually requires a team of doctors with different specialties – oncologist, radiologist, surgeon, pathologist, and possibly others.  It may be just that the radiologist was not comfortable presenting next steps til he could consult with others.

Please do not assume the worst until you hear something back from your doctors with a definite assessment and plan.  I know it is hard not to worry, but for now you can safely let your doctors think through what they observe in your tests and scans, which will no doubt lead to a plan of action.  Your recurrence was caught early, and I am hoping the next phase in your treatment stabilizes the cancer.

Take care, regards, Mary

Hi Hatice,

It is nice to hear from you, but I wish you had gotten better news from your scan.  It sounds from your reports that you have good doctors so I am hoping you will very quickly have a new treatment plan to address the recurrence.

Cholangiocarcinoma does sometimes turn up in the peritoneum.  Our patients usually report being given systemic treatments (e.g., chemo) to address peritoneal recurrence.  A very small number have reported being sent for a treatment called HIPEC, which involves directly bathing the peritoneal area with chemo, sometimes after surgical reduction of the cancer implants found there.  HIPEC is a severe treatment, and not very commonly used for cholangiocarcinoma but I mention it in case it is something you want to ask your doctors about.

Have you had genomic profiling done?  There may be additional treatments available through clinical trials if your profiling showed a genomic defect for which there are new drugs now in testing.  There is information on the Cholangiocarcinoma Foundation website about the testing if you are unfamiliar with this topic.

From what you describe, the new recurrence was found very early, your doctors are on it, and you are in generally good health.  These are all positives that you can bring to the next round of treatment which hopefully will bring the cancer under control.

Take care, regards, Mary

Hi Hatice,

Your CA 19-9 and CEA results were not what you wanted to hear after two surgeries and chemo, but please hold judgment on what this means til you see your oncologist.

Tumor marker tests are more difficult to interpret during treatment because for some patients, an effective treatment itself can cause tumor markers to initially rise before subsequently falling.  (In other patients, an effective treatment can result in their reducing right away.)  In my own case, after surgery I had both chemo and radiation, and my CA 19-9 more than doubled from what it was just after surgery.  It drifted down afterwards.

Generally, if doctors suspect a possible recurrence, they will look for other evidence for example by ordering scans.  It can take up to nine months or so after a rise in CA 19-9 for a recurrence to be visible in a scan, so it may take your doctors a little time to figure out what is going on.

Patients are usually reminded that there can be non-cancer reasons for tumor marker test results to fluctuate.  I had a personal experience with this earlier this year when I had both a higher CA 19-9 and a scan finding related to colitis (essentially a bout of stomach flu).  I learned that colitis is a benign factor affecting CA 19-9.  My CA 19-9 has since returned to its prior level so hopefully that was the cause.

In sum, a higher CA 19-9 (or CEA) is not welcome news but the number alone does not tell us much.  Your doctor will work with you to figure out the cause and then take action.  Please don’t worry too much until you hear from your oncologist.

Regards, Mary

Hi Hatice,

It is good to learn you are recovering well from your second surgery and tolerating the chemo reasonably well.  I hope you continue to feel better and have good scans ahead.  There always seems to be anxiety with scans, but they are a necessary part of keeping this cancer under control.

Take care, please stay in touch, Mary

Hi Derya,

My experience after surgery was similar to what Hannah reports.  A liver resection is a major re-plumbing, and it can take a while for the digestive tract to settle down and for patients to adjust to the new normal.  Also, my recollection is that recovery from the anesthesia and the post-surgery pain medication also affected my appetite.  The usual recommendations for small meals, avoiding hard to digest foods and supplementing with juicing or protein drinks are helpful.  If there are severe disruptions to eating, this should be reported to the surgeon.  My recollection was that it took maybe three weeks to get back to semi-normal eating, and I was not eating much at all in the first week after surgery.

I hope your mom recovers quickly from her surgery and is feeling better.

Regards, Mary

Hi Derya,

So glad to hear that your mom had her surgery and hoping that you get good pathology results soon.

Regarding getting her back towards a more ‘normal’ diet and intake of food, it is a very slow process after this kind of surgery. After my mom’s resection in February (in which she lost her gallbladder – not sure about the status of your mom’s but losing a gallbladder really messes with your ability to digest things), she ate nothing at all for several days, and then was limited to a few bites here and there for several weeks before she really got back to anything like a normal-sized meal. If something sounds tasty, try it. Be wary of things with lots of fat or lots of fiber, as these both require more work to digest. If she is able to eat 2 or 3 bites of something, consider it a success and return to the project after a couple of hours. With a little luck and a little time, she’ll be having a half dozen bites, and then more. I know that others have had success with nutrition drinks and similar. My mom thinks they’re revolting, but if your mom is more open-minded about them, they might be a good way to ensure she’s getting the nutrients she needs.

Good luck and best wishes for your mom’s recovery!

Hannah

• This reply was modified 5 years ago by Hannaha.