Karen Cohn is a retired middle school special education teacher who was diagnosed with follicular lymphoma in July 2020, considered to be highly treatable, but chronic and incurable, which is currently in remission. She is also a fifth-degree black belt in TaeKwon-Do, and is the assistant instructor of a TaeKwon-Do class. She enjoys working part-time with special education students, crocheting, walking, indoor rock-climbing and talking to and petting any dog she sees.

Karen Cohn

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

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.

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Articles

Navigating the complexities of modern healthcare requires patients to actively advocate for themselves, especially when dealing with chronic conditions like follicular lymphoma. Despite advancements in electronic health records, communication gaps persist among specialists, necessitating patient vigilance. Patients must ensure that all relevant information is shared and interpreted correctly by their healthcare providers. Additionally, the influx of external information from non-medical sources can complicate decision-making, emphasizing the importance of discerning credible information. Self-advocacy remains a crucial, albeit stressful, component of managing significant medical issues.

Even if care teams have all of your information on their end, advocating for yourself is still necessary during cancer treatment.

The Need for Self-Advocacy During Cancer 

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

Every so often, the topic of remission comes up. Remission is, after all, the goal of cancer treatment, and the longer, the better. People who haven’t dealt with cancer often think that remission is an either/or kind of a thing: either you’re in remission, which means you were cured, or you’re not.

But many types of cancer, follicular lymphoma among them, are not curable. Even if patients reach remission, they often relapse and need a different, and often more debilitating, form of treatment. This leaves survivors in a state of constant, low-grade fear, which can be pretty stressful — especially when anything even vaguely resembling a previous symptom occurs.

I had several “B” symptoms before diagnosis. “B” symptoms are side effects of cancer and look different for different people. Mine were sinus tachycardia (high heart rate), fatigue which caused unexpected naps, sweats (usually called night sweats, because they tend to happen during sleep — mine tended to happen during naps), and sudden, unexpected weight loss.

The first three tend to occur any time I get sick; my resting heart rate rises, I get tired and if I have a fever, I sweat. I can usually dismiss concerns about those with a thermometer. If I have a fever, I can calm myself down by waiting a few hours to see if the fever breaks, or if it’s high enough or lingers a bit, I take Advil (my preferred fever medication).

That leaves weight loss, and that’s an issue. There’s a lot of press about weight loss in general, and recently, with the introduction of GLP-1 medications, there are even more articles about weight loss, and therefore more discussions about weight loss.

I lost some 15% of my body mass in two months prior to diagnosis, and until I was diagnosed, there was no apparent reason, except that I’d injured my back and wasn’t eating as much. Per my oncologist’s instructions, and due more to treatment than any change in habit on my part, I regained some of the weight. After all, I hadn’t done anything to lose it. Once treatment started, the cancer was less active and then indetectable, and I started to regain it. Regaining weight under those circumstances, it turns out, is easy — a little too easy — and now I want to lose at least some of it again.

Here’s the problem with that: sometimes I lose weight and don’t know why. I’m sure many people have experienced this. Some days no matter what you eat, you lose weight, and others, no matter what you eat, you gain weight. When I lose weight and can’t explain it, I tend to freak out, even several years later, and then I eat too much to see if I regain some, just to be sure. It’s getting better over time, but weight loss — a struggle I had before cancer — is becoming a real issue. I’m back where I was before diagnosis, and I was trying to lose weight then.

Now I have stress issues around weight loss too, approaching post-traumatic stress disorder (PTSD) level, which makes it a real struggle. My closest friends understand, but it’s still just enough of a stress-inducing topic that it’s hard to discuss with my primary care physician (PCP), who brought it up at my last physical. The PCP who diagnosed my cancer retired after I completed treatment, and it was just more than I could manage to explain all of that to the new one. It’s complicated because my oncologist and the PA both said that I’m good where I am. Or at least, the last time I asked, which was about 8 pounds lighter. Maybe next year, I’ll be up for that discussion. Even better, maybe I’ll have managed to lose some of the weight I regained. In the meantime, I’ll do the best I can to eat properly, continue exercising and try not to obsess over my weight.

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Living with follicular lymphoma, a chronic but treatable blood cancer, involves navigating the complexities of remission and the fear of relapse. Remission does not equate to a cure, and patients often face ongoing anxiety, especially when experiencing symptoms reminiscent of their initial diagnosis. Weight fluctuations, particularly unexplained weight loss, can trigger significant stress, sometimes approaching PTSD levels. This stress complicates discussions with healthcare providers, especially when managing weight becomes a concern. Balancing treatment outcomes with personal health goals remains a challenging aspect of living with this condition.

Whenever I get sick, I experience a few side effects that usually go away, but unexplained weight loss becomes a problem for me.  

My Unexplained Follicular Lymphoma-Related Weight Loss 

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

Recently, I’ve been getting a little lonely; I’m retired, and most of my friends work, which limits their time. I’m far enough out of treatment, and I’ve been sufficiently reassured by the immunologist who assessed me, that I’m more willing to mingle with people I don’t know. Without a job, though, it’s harder to meet new people than it used to be, so I finally joined Meetup and went looking for crafting groups, because I enjoy fiber arts — crocheting, mostly — but also cross-stitch and needlepoint, and one of these days, I’m going to practice knitting enough to make it stick.

One of the groups I found is a fiber arts group that meets on a drop-in basis at a local coffee shop for several hours, and I’ve been several times. The last time I went, a few weeks ago, I met another cancer survivor. I forget how we got on to that topic, but somehow, we found ourselves discussing medical diagnoses and the difficulties in dealing with chronic cancers. In contrast to my own situation, this other person has a slow-growing, incurable form of liver cancer that is kept in check through periodic treatments, which started with surgery to remove as much of the cancer as possible. In the course of explaining the course of treatment, the other person asked how my surgery went, and seemed quite startled to find out that I hadn’t had surgery, and even more, that surgery is not a given for cancer treatment.

I’ve learned far more about cancer, and cancer treatments, in general, and lymphoma specifically, than I ever wanted to know. It’s the way I am; when I want to know about something, I start to research it, and the research can take me off into various tangents. I know other people learn differently, and some don’t do any research at all, but still, it was quite a shock for to me find out that this other person knew nothing about any other forms of cancer but the one they were being treated for, and assumed that all types of cancer were treated exactly the same way.

At this point, I expect people without direct experience with cancer to have assumptions rather than information, but until this encounter, I expected that other people with cancer would at least have talked to a few other people with cancer — in the oncologist’s waiting room, if nowhere else —and realized that not everyone else was following the same steps. That others might not garner at least a little general cancer information along their journey had never occurred to me, and it set me back. I’m not really sure why; I guess it’s because, like many people, I expect others to react kind of the same way I do. When this person didn’t, it made me second-guess my own actions, and I’m still not sure what, if anything, I want to do about it. So far, I haven’t done anything.

Recently, I met a fellow cancer survivor but after talking with her about cancer, I realized she had a different perspective than I did.  

Meeting New People and Finding Old Assumptions After Cancer 

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

I belong to various online forums for cancer patients. One of them recently asked, “What does the phrase ‘fighting cancer’ mean to you?” I started thinking about it and realized that I don’t like it. The connections to war, to winning at any cost, are kind of disturbing to me. There are negative connotations to that, I am sure, are not intended, but they put an enormous amount of unneeded pressure on people in various stages of cancer diagnosis, treatment and survival.

The military terminology just doesn't work for me, and it's an issue that goes beyond cancer into the wider world of medicine. So many people are kept alive in a state they would not have chosen — in a coma, in severe pain, with significant medical supports, etc. — in the name of "fighting" death. The terminology around death, particularly in phrases such as "lost the fight" is a problem; it assumes that no matter how much medical intervention was provided, anyone who dies (or, by extension, experiences relapse or doesn't reach remission) did something wrong, and that’s just not so. Medical technology is constantly evolving and changing, and treatments that didn’t exist a few years ago are changing outcomes in a wide variety of illnesses and injuries.

When I was diagnosed, I was in shock. I wasn’t thinking about “fighting,” I was numbly going wherever I was told to go, doing whatever my medical team said: getting more tests done to pinpoint the stage and grade of my cancer so a proper course of treatment could be determined, getting baseline testing done so the effects of treatment could be better tracked, filling prescriptions and buying over-the-counter medications intended to minimize the effects of treatment, contacting my principal and arranging for medical leave, trying to field the questions and concerns of those around me, doing research so I’d have some idea what was going on and what my options were, and so many more things too.

I wasn’t fighting; I was reacting. In some ways, I was barely coherent.

For me, cancer treatment isn’t a fight, it’s a journey. That’s probably truer for cancers such as mine, which is considered very treatable, but chronic and incurable, because even with reaching NED following my first (and hopefully only) course of treatment, there’s always that nagging thought in the back of my mind that it might come back. My oncologist was very clear that he didn’t treat me so I could stay at home and hide from possible issues, such as infection — cancer treatment tends to tank the immune system, and I was treated during the height of COVID, before there was an effective vaccine. He treated me so I could live my life. Like any journey, there are destinations, with diversions, steps backwards and forwards, side trips and missteps. But the journey goes on, even if it’s altered in ways that were never previously considered. For me, a journey is far better than a fight.

The militaristic terminology of “fighting a disease” does not sit well with me. After being diagnosed, I wasn’t fighting. I was reacting. 

Karen Cohn

The Need for Self-Advocacy During Cancer

My Unexplained Follicular Lymphoma-Related Weight Loss

Meeting New People and Finding Old Assumptions After Cancer

‘Fighting Cancer’: My Thoughts on the Phrase

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