My experience has been that a cancer diagnosis brings a plethora of invitations to participate in studies. Many of these require only a one-off blood sample and/or questionnaire. A few involve some sort of ongoing regular participation.
In the early days, when standing still was difficult enough and moving forward was just a far off ambition, the decision as to whether or not to take part was very straightforward. If it seemed likely to be of reasonable benefit to me or to future generations, I tended to do it. As a result, I gave a lot of blood samples, filled in numerous questionnaires and was even interviewed about the involvement of friends and family in my decision making processes.
Now that I am a couple of years on (surgery was 2 years ago tomorrow), I'm a bit more discriminating but still happy to participate in studies involving one-off samples or forms that might lead to important work around understanding and preventing breast cancer or in moving forwards after acute treatment. The difficulty for me is with those studies that involve ongoing participation.
I appreciate that much important work can be done only through ongoing studies, but they also serve as an ongoing reminder. When I'm down to just an annual visit each to surgeon and oncologist, 4 monthly, or even worse 2 monthly, tests of one sort or another are a less than welcome reminder of the problems that could arise. There is the anxiety that always accompanies waiting for results and even more when repeats are needed or problems, however minor, are identified.
At the moment I am (yet again) feeling somewhat ambivalent about the ovarian screening study. The study people are lovely, the work they are doing is extremely valuable and I have already benefitted from it. However, there is a very big "but", and that is that not only does it raise anxiety from time to time, it also makes it hard to get back to everyday life. So far I have had an ultrasound that had to be repeated, a blood test that triggered a request for a repeat and another that was problematic.
The study people generally present repeat requests in a calming way, but the hospital concerned is not always so considerate. Having said that, the hospital letters can, in retrospect, appear a bit comical! I received 3 letters about a repeat blood test. The first, from the study, said that because of the variation between my first and second set of results, the computer needed another to establish what is normal for me. Fair enough I thought, once the initial anxiety subsided. Then I had a letter from the hospital saying that because it was increased from the previous level it had triggered a request for a repeat and I might want to discuss the endometrial thickening with my GP to see if a gynae referral was indicated. This was followed by another letter from the hospital to say that the (same) blood test reading was "the highest it has been for you" and that they needed to repeat it "just to keep an eye on things"! Oh but please don't be alarmed! Not surprisingly, my initial reaction was to be alarmed. One week the computer just needs further data and then two weeks later they need to keep an eye on things.
Then I stopped and thought about it. This was only my second blood test they were talking about - there was a 50% chance of it being "the highest it has been" for me! That third letter may have been alarmist but it was also vaguely silly.
It does, however, illustrate what for me is the drawback of being in the study. It can trigger a series of extra appointments and additional anxiety. As I wailed in an email to a patient friend "I just want my life back" rather than a string of tests and appointments. Fortunately Common Sense GP agreed with what Reassuring Radiologist had said and we decided that there was no need for a gynae referral unless I started getting worrying symptoms.
A part of me wants to come out of the study so that I don't have the additional tests and anxiety that almost certainly hamper my moving forwards. Balanced against that is the fact that I might derive benefit from it (although my risk is now assessed as being much lower than it was this time last year). Also weighing heavily with me is the fact that if people come out of studies like this just because it is stressful it can spoil the study - there is a psychosocial arm of the study looking at the stress element.
I've spoken with people who say that I should just think about what is right for me, weighing up the moving forward issue with the potential benefit without worrying about spoiling the study. I am mindful though that the study is now in its final year so it could be worth hanging in there for a bit longer. After all, finding a way to live with anxiety, appointments, risk and uncertainty is all part of learning how to live in the Land of New Normal.