Surveillance post treatment

I wanted to post on a subject for which I found it hard to find information – standards for surveillance after treatment has been completed, in other words when the patient is not under active treatment.

In my own case, I was fortunate to be respectable but due to bad tumor pathology, I had adjuvant chemotherapy followed by chemoradiation. During the radiation phase, I had between six and nine medical appointments each week, which was quite a challenge because I was still working full-time.

When the radiation treatment ended, the sudden change in the frequency of contact with medical providers was surprising to me. Oncologist visits dropped to every three months with follow-up visits to the radiation oncologist mixed in. Blood work (liver function and metabolic panel) dropped to every three months, but I pushed for monthly CA-19-9s. And initially it was recommended CT scans drop to every six months. At that point, I was eight months out from diagnosis.

Also, I noticed that my reports of symptoms that I associated with the treatments started to yield – in some cases – the response, ” you should go see your general practitioner for that.” Had I become excessively needy? Too dependent on frequent reassurance by my medical collective?

I wondered at that time what the follow-up “standard” was, particularly with regards to scans –and found there is not much documentation out there, relative to other cholangiocarcinoma treatment topics. The NCCN (US) guidelines advise that scans every six months can be considered. The ESMO (European) guidelines advise 3-monthly visits during the first two years with the usual blood tests and a CT of the thorax, abdomen and pelvis, moving to every six months during years 3-5, then annual thereafter. I also found a few cases where major cancer centers post their follow-up recommendations. For example, Dana-Farber notes that follow-up is a personalized decision between doctor and patient. For biliary cancer, typical follow-up is indicated to be blood tests and radiology every three months for the first few years after treatment.

Other sources of info include retrospective studies of patients from major cancer centers, a few of which will say how often blood tests and scans were undertaken. And of course, this discussion board reports many individual experiences. For example, the number of board discussants talking about their quarterly scans suggested to me that this is the practice in many cancer centers. For other cancers, there are research studies of whether there is a “survival benefit” to more aggressive surveillance, but I did not uncover this sort of study for cholangiocarcinoma.

In the end, I was persuasive in advocating for quarterly scans during the first two years, timed to my quarterly oncologist appointments. The specifics of my own case suggest a higher risk of recurrence, which I understand is most likely during the first two years. I thought a lot about the risks of the scans themselves and adverse reactions to the contrast. I took a folder with the ESMO guidelines and other materials I had found to my oncologist appointment, and we discussed that this cancer can be symptomless, that the CA-19-9 is good but not a 100 percent reliable early warning signal (CT scans are also not 100% reliable in catching small changes) and what would happen if my insurance did not pay.

In sum, the most important guidance for me was that surveillance is a personalized decision. Patient input is important, as are the specifics of each case. I also came away with the feeling that post -treatment follow-up is a topic that should be more explicitly addressed in cholangiocarcinoma research and treatment guidelines. I have calmed down and am enjoying this current phase where I am not seeing doctors so frequently. There are now even magazines that I have not read.

Experiences and recommendations of others related to post-treatment follow-up would be great to hear about! Mary