Dad diagnosed with CC, any advice on PET scans? so scared!!

Hi Kellyrosie, I am so sorry you are going through this.

My dad was diagnosed in early 2019. I think he may have had one PET scan at the outset but his current care team doesn’t use them- at MD Anderson. They have told us that the CT scan is the gold standard.

I agree with Hannaha– getting a specialist you trust and getting genomic testing is key. My dad has been on the same targeted drug- Tibsovo- for just over 2 years. Don’t give up hope! And please do keep asking us questions here (or in the Facebook groups if you decide to join there).

Take good care,
Laura

Hi Kellierosie,

I’m so sorry for all of the tragedies that your family has experienced.

I am not sure that I can provide you with the specific reassurance that you want, but perhaps I can provide another path for hope. My mom was diagnosed more than three years ago with an approx. 10cm tumor on her liver. Despite initial optimism that she could be operated upon, they found evidence of satellite metastasis in nearby lymph nodes and cancelled her surgery. She went on to do 6 cycles of gem-cis chemo which she responded very well to, allowing her to go through a second major surgery early the following year with the hope that it might not return. The surgery was a huge success, although the cancer unfortunately did eventually return. But she has been able to maintain stability now for 18 months on a targeted therapy, Tibsovo, that works on some patients with the IDH1 mutation. There are a growing number of promising treatments for CCA, and there are more with each passing year. With any luck, your dad will be able to benefit from these treatments.

I would make sure that the following things happen:

1) It is crucial that your dad be seen by a specialist in CCA. Because it is a rare cancer, even many regional cancer centers may not have the needed expertise to be able to guide your dad’s treatment. There is a great list available on this website that will direct you to the nearest specialists. Reach out to them for a second opinion ASAP. Trust me. My mom’s local hospital basically sent her home and told her that her case was hopeless. It was not hopeless and neither is your dad’s diagnosis.

2) Get your dad’s cancer tested to see what kinds of genetic mutations it may have. This will, hopefully, open up new treatment options for him.

3) Don’t be afraid of chemotherapy. It is important to know that it is not an either/or choice: surgery or chemo. There are a number of studies now that show that many patients respond well to chemotherapy and are able to “convert” after a period of time to surgery. Again, it’s important that your dad have specialists looking over his case who can help to maximize the benefits of chemo with this possibility in mind. Also, if he does have surgery first, his doctors should definitely be talking to your family about doing an adjuvant chemotherapy after the surgery. CCA is, as you’re no doubt aware, an aggressive cancer and it is not usually enough to just have the surgery. There usually needs to be a “clean up” phase afterwards.

4) Your dad may be feeling pretty hopeless right now. I remember my mom went through a really dark period after her diagnosis. As his treatment progresses, be it through surgery first or chemotherapy first, it is important that he gets up and moves around as much as he feels able. Take him on walks or join him for other forms of exercise if you can. Getting the blood moving and keeping him as physically fit as possible will be good for his mental state just as it will be important for getting him through what might be a tough treatment process.

Please let us know how things are going and come back to us with any questions that arise-

Hannah