TOPIC:

Before & During the Diagnostic Process: How to Help Yourself or Others

Testing to find out if you have cancer is scary and emotionally draining for the person and loved ones. Some diagnostic procedures cause pain. There can be time spent waiting for the test, waiting for the results, and waiting for the treatment plan. All this waiting and wondering causes incredible stress for the person and those who care. (For convenience, I will use “she/her.” All the information applies to anyone of any gender identity going through the cancer diagnostic process.)

How to Help

1.   Drive her to all tests. If she wants to drive, go with her as a passenger even if you must wait in the car. She will be so glad that you are there when the testing is finished. 

2.   Offer to go with her to doctor’s appointments to sit in the exam room waiting with her (helps pass the time and keep the scary thoughts at bay) and to take notes for her. She will NOT be able to acquire information on her own when it is first said to her due to fear, anxiety, unfamiliar terms, etc. Bring a dedicated notebook and quietly write down as much as you can. At the end of the visit, ask the doctor/medical provider to look at your notes and be sure they are accurate.  

3.   Remind her to get copies of every test, scan, biopsy, report, etc. Providers give these to patients if the patient requests it. They can be given in person, mailed, or emailed. Start doing this with the very first test. It is easier to get copies of printed material and CDs of scans and images right away rather than waiting until later trying to get them all. These are provided at no cost. Usually there is a form to fill out to get the materials. 

No matter if she has cancer or not, she will want to start a three-ring binder with every test result and every doctor's appointment notes because information is hard to keep track of and may be useful in the future. If she has cancer, multiple professionals will want to see the tests results and images. Most often providers say they can send information from one doctor or provider to another electronically. In reality, that does not always work out. You could find yourself having to make another appointment because the doctor did not receive what was needed. Having a folder with all her own information in it to bring with her every time she goes to any doctor will turn out to be helpful.

 4.   It may not be helpful to say things like “everything will be all right” or “you will be fine” or anything like that. Those are our hopes, but we do not KNOW what might happen. Better to say that you are willing to walk this journey with her and talk about things as she learns them and be a sounding board, helper, etc. for her. Point out her strengths and positive attributes. Remind her that she is on a sharp learning curve so that feeling overwhelmed or freaked out is a perfectly normal response. Remind her she is not alone. 

5.   Remind her of the rapid advances in medicine and how she must not compare her situation to anyone, anywhere, in the past. More knowledge about fighting cancer has been gained in the last ten years than in the last ten decades! More knowledge about cancer treatment has been gained in the last two years than the last ten years. No one else's treatment experience is relevant.  

6.   Empower her to tell people NOT to tell her stories about someone with cancer who suffered and died. (NOTE: I put a sign up in my kitchen that said, "Cancer horror story free zone" and I told people to STOP the minute they started a story about someone. Like if they said, "Oh my aunt had breast cancer..." I would stop them right there and say, "Only continue if this story has a positive outcome." People were shocked at my boldness, but it made them think before they spoke. )

 7.   Remind her to be cautious about searching the internet for more information. During the diagnostic process, when it is not known if she has cancer, what type of cancer, what stage, etc. searching the web can cause more anxiety, confusion, and misunderstanding. Use the web to define terms that are known to apply at this stage. Tell her to ask her medical professionals if they have websites that they recommend at this stage in the process.