Red flag patient.
It is a bad thing to be a red flag patient. When a physician is treating a patient with a symptom there is always a differential diagnosis. This means that the reason for the symptom could be a b or c. For chest pain, the reason for the symptom could be a heart attack, it could be a pulmonary embolism, it could be pneumonia, it could be a rib fracture, it could be heartburn, it could be a muscle spasm, or or it could be metastatic cancer.
In an average patient, depending on their age, certain of the diagnoses may be more likely but certain characteristics trigger awareness that a physician would have to be more aggressive in looking for the less common but more dangerous diagnosis. An example: back pain is a very common complaint and with new back pain an average 40 year old patient will be asked if they have bowel or bladder incontinence, they’ll be asked if they have fevers, if they have night sweats and then we asked if they have a history of cancer. If the answers to all of those red flag questions are “no” then the most likely diagnosis is that it’s an acute back strain or a disc herniation. The treatment for both of those conditions to start with is avoiding heavy lifting, stretching exercise, and gradually working into some strengthening exercises.
But if there are fevers or night sweats then you have to think about whether there’s infection in the back. If there is bowel or bladder incontinence then you have to think about whether there is a very severe spinal compression high enough up to be causing what we call cauda equina syndrome, where there is compression of all of the nerve roots rather than just one. The diagnostic workup is much more aggressive in these cases where we want to have Imaging right away and perhaps even lab studies to rule out infection right away.
If you are a 40 year old BRCA carrier or if you have had breast cancer whether you are a BRCA carrier or not, then that high risk for cancer makes that you are a red flag patient. In those cases lots of different symptoms have to be considered regarding could this be cancer and that means that the work up has to be more intensive.
As a medical student and as a resident and as a physician I follow these red flag rules, and at times use my instincts to tell the difference between an average back pain patient, and a different type of back pain that needs a more aggressive workout. It means that I have sniffed out the tumor in the spine earlier than perhaps other people might have or have been the first one identify the metastatic spine disease that was so obvious that whoever the patient saw would see it.
Once I started to spend time on the force message boards I began to learn just how high the risk of cancer, recurrent cancer, and metastatic disease BRCA carriers are.
There was one after the other incident where a member would post on the board “I have this, that or the other thing: what do you think it is.” Being the diligent doctor Force member, I would give a brief differential diagnosis, recommended the patient check with their doctor, consider seeking imaging depending on their status as a survivor, or previvor. And was horrified how often these red flag patients came back with at came back with: “OMG lump in my armpit causing the numbness going down into my fingers is actually cancer.” Or “oh my God that pain in my spine is actually cancer” or “oh my God that bump on my reconstruction is actually cancer even though I’ve already had my breast removed to avoid getting cancer.”
For me, the dawning of how serious and how high my risk was occurred immediately upon telling my internist and my gynecologic physician of my situation and seeing the look Of terror on their eyes. They were taking care of one of their colleagues who they suddenly had to treat as a red flag patient. I could read how high a risk for cancer I was clearly on their faces. I was scaring my doctors.
It would have felt better for me had they just been able to be matter of fact and state their recommendations, but it may have made it harder for me to be so decisive and definitive about getting my preventative surgeries and getting them quickly. All of my doctors practice giving me the options, but not trying to influence my decisions. This is often annoying, but supposed to ensure that patient’s don’t feel pressured into having to make decisions that they might later regret.
Being a red flag patient is kind of exhausting. Everybody has symptoms. Many of us have symptoms all the time. I have sinus allergies so I’m often having cough or congestion. I have IBS and so my bowels are never regular, so bowel issues flare worries about ovarian/primary peritoneal or pancreatic cancer. I have a bad back and bad knees so those symptoms will often be played off as just my usual, but sometimes they grab my attention.
It was a weird situation knowing that I was heading into my surgery and my therapist was working so hard to get my back muscles loose and my spine aligned, and my core strength improved. And then I was intentionally going under the knife to have surgery that would at least temporarily undo all of the work that she and I were was doing.
As I was getting ready for my surgeries, I had an episode of thoracic back pain. Because of my new awareness of my high risk status, I was quick to get things checked out. I was fine. Physical therapy for mechanical back pain, perhaps with some stress adding to the situation.
HYPOCHONDRIASIS VS. RED FLAG Patient
So back to red flag patient vs. paranoia. In my position, as a physician, I have it both easy and hard. I am acutely aware of all of the red flags and the medical disasters that each red flag warns about. I can direct my own reasonably easy.
I started having sinus congestion 3 years ago that was associated with vertigo. My strategy was to keep in mind the four and a half hour tPA window for stroke treatment and monitor for a while. Fortunately for me, guaifenesin relieves my sinus symptoms enough that my vertigo goes away within a half an hour. So my medical knowledge helps me have an alternative between living uncomfortably with a potentially dangerous symptom or going to the doctor.
Two years ago when I was having palpitations and tachycardia I did have to go to the emergency room for testing and rule out anything other than anxiety. It is hard when the differential diagnosis includes anxiety for a doctor to seek evaluation. I assauged that discomfort a little by taking my computer and charting in the ED waiting room. I did curbside my colleagues, who supported my plan of going to the emergency room. I have the advantage of going to a Cardiologist with whom I work, whose office is on campus, so I normally only have to take a couple hours off from a normal work day. Over all, the advantages outweigh the disadvantage of too much knowledge fanning the flames of the paranoia.
Can you really call it paranoia if you’re at high risk of bad things happening?
Hard to talk about this topic without scaring people further. I think of a FORCE with primary peritoneal cancer. Another who died suddenly of a secondary cancer. I learned my lesson from my message boards, that our high-risk status means trying to alleviate our fears that most likely symptom a is not the worst case scenario answer but that we need to get it checked out anyway. There is a slight chance that symptom is the first indicator of bad things brewing.
In 2022, I feel the frustration of my fellow hereditary cancer carriers. Access to physician care is much harder. Primary care offices are full, trying to work online is not ideal for evaluating potential cancer symptoms and it is often harder to get the specialist. Testing means figuring out if covid testing is needed to show up for the test, whether the test is worth the risk of sitting in the waiting room with potential covid carriers and how it all fits into our current state as a potential covid carrier, possible covid survivor, possible high-risk to get ill from covid patient.
Personally I went over a year between Primary Care interactions and the prior one was virtual and focused on my covid infection. My pharmacy was reluctant to allow me to write my own prescription for Metformin and my primary care nurse practitioner is no longer in that practice.
I come to the subject of two minds. On the one hand as a BRCA1 carrier means that my risk of developing cancer is high, and that means concern about symptoms become magnified. I am at risk for pancreatic cancer. As a physician, I know the worst case scenarios, but can also evaluate my own symptoms with a lot of training and experience.
I am aware that most of the symptoms that I notice during the course of a day, a week, a month, are not indications of brca related cancers. I have the advantage of being able to evaluate my body and my skin with a decent degrees of expertise. I can listen with stethoscope, palpate and use my clinical skills to determine exactly how likely a given symptom is just that minor chronic condition again. I have colleagues who I can bounce ideas off and get curbside consults from, even can sometimes order my own, or get colleagues to order x-rays or lab test. I have the vocabulary to say exactly the right thing to get my insurance to pay for the test which will allay my fears or confirmed them. I also have patients with the exact diagnoses that I about and anecdotes where bad things really did happen.
I do not envy my fellow hereditary cancer carriers trying to negotiate in 2022. Healthcare resources are more scarce. Providers are doing virtual visits. There’s nothing wrong with the virtual visit, other than it eliminates palpation, eliminates the handshake, it minimizes the ability to assess physical reactions, facial cues. It changes the art of the physician patient encounter.
Doing virtual visits with my long-established outpatients, or with patients who have seen on the Inpatient Rehab unit on a daily basis for four or more visits allows an already established relationship to continue. Trying to do that with a new patient would be more challenging. I think I would have been less reassured if my physician has not had the option of laying hands on me to evaluate my status. Currently we frequently manage without vital signs. This would be and has been the ideal time to encourage patients to make use of available devices such as pulse oximeters and blood pressure cuffs. I have not seen an increase in uptake of patients monitoring their own blood pressure.
In my hereditary cancer community, there is that impulse to post questions on the message board. I could see that would be more tempting in this current environment. The FORCE boards remain well moderated. It seems to get less use the previously. The private FORCE Group on Facebook has been well received. Some of the other boards are frightening, containing posts that indicate not savvy responses and sometimes include incorrect answers. For a medically related board to function well, there has got to be some sort of moderation going on and I’m assuming that the moderators are removing spam but it does not appear that there are enough hereditary cancer savvy moderators squelching misinformation.
It seems that the hereditary cancer carrier needs to find good providers who will take the telephone calls seriously and will get the patient in and teach them exactly what they must do. It is also important for each of us to have spaces to be able to bounce things off others and seek reassurance both about each set of symptoms, and about the anxiety of needing to worry about serious issues arising.
One of my patients is ruminating on similar topics this week. The recollection of the tough time getting on the phone to say goodbye to loved ones before intubation and the struggle with the fact of his survival are challenging him. While in the hospital, he had the advantage of providers rounding on him daily to provide reassurance. Once home, that advantage disappears. I hope a message of encouraging appropriate evaluation of potential symptoms, appropriate screenings, taking advantage of preventive measures, and giving permission to call the doctor for reassurance will be enough to keep him moving forward. I wish the same for each of my fellow hereditary cancer gene carriers.