To Test or Not To Test

Once you are diagnosed with cancer, you have two key desires:

• Get the damn thing out of me! 
• Make Sure It Doesn't Come Back!

So you have surgery and they remove every thing they can. You might have to have more surgery to get those pesky clean margins. Then the give you nasty drugs for chemo and might zap you a few times as well with radiation as well. You might get some pills too. All sorts of fun and games thrown at you. 

The doctors swear to you that they have done everything possible to get the cancer out of  you.  So you go back to your oncologists and they tell you... see you in three months! You kind of freak out because you had been getting day to day care from your oncology team and they wanted to know about every fart and sniffle.

So you take a deep breath and wait three months. You go back to your oncologist and they tell you: 'your blood work looks fine, see you in another three months'. You take a really deep breath and ask shakily 'aren't there any more tests? How do you know there is no more cancer in me?' Your oncologist says 'there are no other tests that have been shown to be of any value in following your cancer.' 

This is a very real scenario. Although the patient may want more scans or tests to look for any teeny tiny cancer cooties, there may not be any else they can do to look for cancer for you. There is no evidence of your disease. They have no way of looking for anything now. 

They have to wait until you get some kind of symptom. This could be anything from a fever, swollen lymph nodes, or unusual pains. Then they can run more scans.

There are two reasons that doctors cannot provide more scans: 

1. Scans may not have the resolution to show anything smaller than say 7mm. So they have to wait until something is large enough for them to seem. Scans can include high doses of radiation or contrast agents. You really do not want to have many of them.
2. If you have bottomless pockets, you may be able to convince your doctor you will pay for them because your insurance may not cover scans unless you are symptomatic. 

An additional cost of scans is 'scanxiety'. This is the huge emotional toll on the patient at each scan. It is often better to stay off the emotional cancer roller coaster than to push your way back to the front of the line regularly.

I get it. I really do. I did recently get rid of a back doctor who didn't see a reason to rescan my back after 7 years of treatment even though I complained of different pains over the years. But I am very happy not to have any more cancer scans than the annual mammogram and annual neck check from my endocrinologist. I will speak up if I feel anything weird or think something is going on. (But my track record in noting bad things is awful - if I think there is something there isn't.)

I do not want to have any more scans. If there is a need to have more scans, that would freak me out just as much as a new cancer diagnosis. So test me less and I will be happy.I am happy to live in my cancer free la la land, than to be rediagnosed.