Newbie

[Edit: wrote my reply while bglass was apparently posting hers. Apologies for some repetition]

Hi Bruce,

Welcome to this community.

I should start by saying that I speak as a family member and an avid reader of relevant medical lit, not as a medical expert. My biggest recommendation is that you reach out, if you have not already, for second opinions from major cancer treatment centers.

I have not heard of this kind of post-resection complication, and can only offer my sincerest sympathies at the rocky road you must have traveled these past few weeks. I can hardly imagine how frustrated you must feel and eager to start the radio/chemo, on top of the pain and discomfort of your intestinal injury, atop an already challenging surgery.

Based on having seen my mom through chemotherapy and from what I have read of radiation therapy, however, it is important to be as strong as possible before you begin the treatment, since it will ask an awful lot of your body. While you are no doubt in an understandable hurry to get started with this next phase as soon as possible, these treatments can only be effective when your body is able to withstand them. Like you, I have heard that there is a standard guideline for beginning post-operative (adjuvant) therapies before 12 weeks after surgery. It is important to remember that this guideline was selected based on averaging data points in medical studies: they are ideal calendars based on “average” patients; they are not absolutes, and there are no actual average patients in real life. It is important to remember that within those studies, patients had a range of experiences and responses to treatments on either side of that 12-week “window.” Again, I am no doctor, but I would be inclined to think that radiation and/or chemotherapy would still offer important therapeutic benefit even if you miss the so-called “window” due to the important healing your body is doing right now. Are your doctors able to explain why they see this calendar as important, and what their thoughts are about starting the treatments a week or two late?

You have not mentioned where your are receiving treatment. One of the most important things with a diagnosis like cholangiocarcinoma is getting second (and third, and fourth) opinions. Smaller non-specialist hospitals are often poorly equipped to deal with patients who present with this diagnosis, as my family quickly discovered. And even if you’re at a major cancer center that treats CC all the time, it can still be really helpful to get a new set of eyes on your case – particularly oncologists ready to think outside the box about your unusual circumstances. If your medical team seem overly fixated on this 12 week “window,” perhaps others might have a different opinion. Admittedly, getting a second opinion sometimes takes time. Still, I think very much worth getting that ball rolling.

As a parting thought – congratulations on the resection itself – even if it has been a far more challenging journey than expected.

Hannah

• This reply was modified 4 years, 4 months ago by Hannaha.