Self Advocacy

About 10 days after the port was placed I noticed some pain in my neck close to where the lead goes to my vein. I mentioned it to Holly – my lymphedema therapist. She always asks about any pain or side effects. She encouraged me to call the oncologist office. So I called and spoke to the nurse and she asked me to stop by after therapy. She looked at my neck and said since its not swelling or red it didn’t seem to be anything to worry about. She said that some people were more “sensitive ” to the port. She told me to watch for redness or swelling or let them know if the pain got worse. The pain continued and I mentioned it to the nurse practitioner at my second treatment. She examined my neck but didn’t seem to be concerned at all. The following week my neck was still hurting and even felt bruised when I touched it. I called the nurse again and she told me to come by the office on Friday. They had another nurse examine me and I explained that I felt like something was wrong. After some deliberation they scheduled me for an ultrasound. They asked them to get me in that day. After waiting for an hour and a half in the waiting room I finally had the ultrasound. The technician looked at my neck and all the way down my arm. It took about 30 minutes for the scan. She told me the radiologist had read the results and sent them to my Dr. About 10 minutes later the nurse practitioner called and told me that there is a blood clot near the port and I would need to take blood thinners until the port is removed. I am so thankful that I listened to my gut and kept going back to the Dr. to get it checked. They never seemed concerned and it seemed as if they scheduled the ultrasound to appease me but I don’t care. You are the only one that knows your body and you have to be persistent. Call if something doesn’t seem right. Ask questions!

Fortunately I have a great support team. The cancer center assigns a nurse navigator that can assist with any questions. My insurance company even assigned an oncology nurse to my case who is very helpful with any recommendations and can give contact information for any organizations that may be helpful. I have some other friends who have been through the same or similar journey. Not to mention my wonderful family and friends. Get help when you can and don’t forget to speak up! You have to be your best advocate.