Cathy Nobil-Dutton carries the genetic variant for Lynch Syndrome which puts people at risk for a number of different cancers. She was diagnosed with uterine cancer in 2013. Her mother, who also carried this genetic variation, was diagnosed three times with colon cancer.
Her mission is two-fold: to help her clients deal with the challenge of body changes that occur as a result of cancer and to raise awareness about Lynch Syndrome.
One of the most stressful times that cancer patients face is during the period of time when they are being diagnosed and discussing treatment options. Often, a person is going from feeling fine to finding out that they have a life threatening illness in a very short period of time. Information is being given out at a rapid rate and a person has to process all of it and try to make decisions.
- Which hospital should you go to for treatment?
- Who is the oncologist I want to work with?
- Should I go for a second opinion?
- What if 2 doctors suggest different courses of treatment?
It can be a very challenging time for the person who has been diagnosed and also for their family.
I can’t remember what they told me.
Information is being presented at such a rapid rate when you are first diagnosed, that it is very tough to retain all of it. When we get a cancer diagnosis, it is nearly impossible not to experience at least some level of fear. We are all concerned with our own mortality and hearing the word “cancer” often can shut down one’s ability to hear and process information.
I have experienced many people tell me, “After I heard the word cancer, I didn’t hear anything else they told me”. This is a totally normal reaction, but often prevents us from getting all of the facts that we need to move ahead with treatment.
Don’t go to appointments alone- Take someone with you.
Because of this combination of information overload and anxiety, it is really best to take someone with you to your appointments. This is a person who is able to be a passive listener and not an involved party. They can take notes and gather all of the information for you to review after you leave the doctor’s office.
It is not uncommon to have questions arise after your appointments and you may need to look at the notes that were taken in order to reinforce what you were told.
When I was first diagnosed, my husband and I were feeling rushed to meet with doctors and choose my treatment location. I had to have more tests done and it was all coming at us too quickly. I asked one of my close friends if she would serve as my “Cancer Scribe” and attend our appointments. She is a cancer survivor herself so she knew how it all worked, which was really helpful. After each visit, she would sit down with me and review the notes just to be sure I was clear about what had been said to me. Then she went home and typed them all up and emailed them to me. I printed out the email and kept everything in a file that was easy to refer back to when I needed it.
It was such a weight off of my mind not to have to worry that I was going to miss something!
Cancer Scribe: a necessary component of treatment.
I have a wish that the term Cancer Scribe will become a commonly used term in the world of cancer treatment. It would be really wonderful if cancer treatment hospitals began to make it a recommendation when a new patient calls for that very first, very difficult appointment.
When the receptionist is telling you about all of the things you need to bring to your appointment, they could also remind you to bring your “Cancer Scribe” support person along too and explain the value of having a Scribe. It would make a tough appointment go just a little bit easier.