Perspectives on treatment pathways – Isla


Isla was not ready for the health risks of a certain test and requested a different kind of testing even though her health professional disagreed.


What else, I would say that sometimes the protocol that’s in place, I’ll give you an example. So women who take Herceptin they’re supposed to get MUGA scans* (Multi Gated Acquisition Scan) every 3 months while they’re on it to monitor the ejection fraction from the left ventricle of the heart. Well a MUGA scan is an injected dye, it’s a nuclear medicine test, so for someone who gets a blood test all the time and who gets intravenous chemotherapy signing up for a MUGA scan after you’ve had a bone scan too is not something that you want to do. I decided I wanted to have echocardiogram, which is a non-invasive ultrasound of the heart. So I got scolded by a cardiologist because the error bar around the ejection fraction that’s determined from an echocardiogram is probably bigger, is bigger than the change that they’re trying to detect. But I accept that as okay, I know it’s not precise enough but I don’t want another test and I don’t want another needle and I need for you to respect that, right. I understand that I’ve given up precision but what I’ve gained is I don’t have to have nuclear dye in my veins every 3 months, right.

So they have to kind of understand where people are coming from on that even though I know the precision isn’t there, right. So it’s not a good serial follow-up, I know. I made that decision thank you.
No he was upset with me and he continued to say “You shouldn’t be doing this” I’m like “I know you’re not going to see a 2% change you can only see a 5% change I’m willing to accept that, right.” Because the biggest changes are coming usually in elderly women, usually in people with pre-existing conditions. I don’t have any of those so the so-called risk to me of the test is bigger than the lack of precision by the choice that I made in my view. And he, that’s my viewpoint on it and it’s not an unformed viewpoint, it is a lay viewpoint but it’s not an uninformed viewpoint and it is a valid viewpoint.

* MUGA scan: Scan that creates video imagery of the hearts ventricles to check for abnormalities and to ensure that they are pumping blood properly.

More content