Unexpected Setback

We've all seen the medical dramas on TV where the patient comes in with a mysterious ailment and all of the staff work together to figure out the problem and decide on the appropriate treatment. This week, Emily had a vastly different experience in which she was met with apathy and a C.Y.A. approach to medicine. Let me start at the beginning....

On Thursday, Emily had some discomfort around the port that is used to administer her chemo drugs. The port is implanted in her chest about 3 inches below her collar bone and is attached to a catheter which is threaded through a vein. The area around the port was sore and tender with an area of skin about the size of a postage stamp that was bright red and inflamed. Suspecting an infection, she immediately she called her oncologist and was told to come in right away. The doctor looked at it and could not identify the problem so he called in his nurse and asked her (?) and she didn't know either, but they both agreed it did not look like an infection. They decided to order a "dye study" in which dye in injected into the port and an x-ray is taken in order to determine if the port could be leaking. They prepped her for the dye study and prepared to send her down to radiology for the x-ray. As soon as they had her all prepped, which entails inserting a 1 inch needle connected to a long tube into her chest, they notified her that no one was available in radiology, and since it wasn't an emergency, she would have to come back in the morning. They decided to leave the needle in her chest and simply taped her up and sent her home. So, she had to leave the hospital with a mysterious, painful infection AND a needle and tubing sticking out of her chest.

She went back in on Friday to finish the test and it was determined that her port was not leaking. The doctor said he still didn't think it was an infection, but since he couldn't come up with another explanation, decided to put her on antibiotics anyway. Meanwhile, the affected area was getting redder, more swollen and more tender by the minute and had doubled in size. His lack of desire to get to the root of the problem really concerned us all, but Emily dutifully took her antibiotic and hoped for the best.

By Saturday morning, the postage stamp sized redness had grown to the size of a baseball and was swollen at least an inch above the rest of her skin and extremely painful. Since she wasn't getting much help from her oncologist and his team, she decided to call her surgeon at home to see if she could help. That was the best decision she could have made. Her surgeon immediately recognized the symptoms as being the result of extravasation, which is a fancy way to say that the chemo drugs had, in fact, leaked outside of her port and into her chest.

Though her surgeon suspected extravasation immediately, she wanted to run some tests to rule out infection once and for all, so Em and our parents spent most of Saturday at the hospital. Why her oncologist didn't run these tests before arbitrarily prescribing antibiotics, we'll never know. The results of the tests won't be in until Monday, but her surgeon asked her to come back in Sunday morning so she could take a look at the area and see if the redness and swelling had spread. Had it shown signs of spreading, they were going to go straight to the Operating Room and remove her port. Luckily, it did not spread overnight, and her surgeon concluded that it was, in fact, extravasation.

Extravasation is typically caused by a break in sterile technique, not a leaky port. So in other words, the nurse that gave Em her chemo last week didn't follow proper protocol when administering the drugs and caused Emily a pretty serious injury. There are two things that can happen when chemo leaks into the tissue and it all depends on what type of drug is involved. With certain drugs, it causes severe tissue necrosis (tissue death), whereas with others, it simply causes terrible irritation of the skin and underlying tissue that can take weeks to dissipate. Fortunately, Emily is not on the drugs that cause instant tissue death. Unfortunately, she will have to endure the horrible pain for quite a while.

Needless to say, she had decided to leave her current oncologist.

Her surgeon is setting her up with a new oncologist at a new clinic that is closer to home. Hopefully she will have more luck with these folks! Em, I know this has been a painful and stressful weekend for you and I hope that you feel better soon!