The Need for Self-Advocacy During Cancer

Karen Cohn is a retired middle school special education teacher who was diagnosed with follicular lymphoma in July 2020. Catch up on all of Karen's blogs here!

I have follicular lymphoma, a form of blood cancer that is considered very treatable, but chronic and incurable. I received that diagnosis in July 2020 and was declared to have no evidence of disease (NED; remission) in December 2020. 

Once upon a time, doctors were generalists. You got sick, you went to your doctor, who examined you. Then, if needed, they treated you. As medical care has grown more complex and as medical practitioners become more specialized, it is vital that people advocate for themselves and their medical needs. Many doctors practice their specialty in relative isolation, and communication between practitioners doesn’t always happen the way it should.

For some people, it’s not a problem; my health insurance is through an HMO system, and all of my records are in the same system. Any practitioner I see can view anything in my records, and as far as I’m concerned, that’s a good thing. When I wanted to see an immunologist following cancer treatment, the immunologist was able to see all of my records without anything having to be transferred, copied, faxed or emailed. It was all right there.

When my oncologist wanted to see what the immunologist had found again, it was all right there. But this doesn’t negate the need for self-advocacy. I did, after all, have to ask for a referral to the immunologist when I was concerned about my immune system not rebounding properly — or possibly at all — following treatment, a common issue with blood cancers.

There are other issues that can come up as well. Over the past five years, I have seen two different primary care doctors (the one who diagnosed me retired a couple of years ago), an oncologist, a cardiologist, a dermatologist, an immunologist and a variety of nurses and techs, for services ranging from immunizations to a variety of scans (CT, PETand mammograms).

Yes, they all have access to the same information, but that doesn’t mean that they all have reasons to look at all of it, much less to integrate it into a larger whole. It also means that if something doesn’t make it into the computer system, that piece of information is lost forever.

Even if the information is there, there’s no guarantee that the next practitioner will interpret it the same way, or even see it. The testing the immunologist did showed that I had no response to the pneumococcal vaccination, but I had to ask my primary care doctor for it, or she wouldn’t have noticed that particular test result — after all, it wasn’t testing she’d ordered.

Then there is input from outside the medical establishment: friends, family, the media, etc. There is so much information out there, and so much of it is wrong, misinterpreted or applied incorrectly. Sorting through information and vetting sources to know what information is valid and applicable is hard, and knowing what to ask for, and when, adds a lot to the stress of trying to self-advocate.

There are so many things “everyone knows” that are wrong, and yet widely accepted. There are also a lot of desperate people out there, for whom treatment was ineffective, looking for anything that will give them hope, and recommending it to others.

Anyone who has a significant medical issue, whether it’s a one-time injury, a permanent chronic condition, or anything in between, runs into these issues with self-advocacy. It’s one more stressor in a list of stressors.

Patients should always tell their medical providers anything they feel, or anything that’s changed, because the patient may make connections that no one else sees, or see some snippet of information that triggers something else, something beneficial. Yet, it can seem like one more thing that needs me to think about cancer when I’d rather think about anything else.

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.