Do you think that you might be showing early signs of the chronic swelling condition known as lymphedema? Assessment by a qualified healthcare practitioner is vital for an accurate diagnosis, but learning the basics of how to self-diagnose lymphedema can help you monitor yourself more effectively and discover your symptoms sooner – which can lead to earlier diagnosis, easier self-management, and better outcomes. In this article we offer four self-tests that can help you detect symptoms of lymphedema early, including two NEW tests not available anywhere else.
Breast cancer patients at risk of this condition are often told to simply “watch for the symptoms of lymphedema”. In our experience, and that of our patients, this advice is often inadequate. Most patients first learn of their condition only after experiencing obvious swelling, and by the time many receive a formal diagnosis of lymphedema, significant swelling and permanent tissue changes have already begun to take pace. So how do you know if you are showing early signs? Is it possible to detect lymphedema before obvious swelling occurs? Researchers have been investigating methods for screening at-risk patients for some time, but this knowledge remains largely buried in research papers rather than being taught to patients. We believe at-risk patients should be taught better methods to monitor and self-diagnose lymphedema, this will help them seek out a professional diagnosis earlier, and receive appropriate care faster.
To address this need, we took the most promising clinical studies and created four tests to help you “self-diagnose” lymphedema in your arm after breast cancer treatment. This includes two new tests not available anywhere else.
These four tests will help you detect early symptoms of lymphedema that might otherwise go unnoticed, and help you decide if you need to pursue a professional diagnosis. Of course, if you are at risk of lymphedema the best strategy is to book a visit with a lymphedema therapist (look for someone with a Combined Decongestive Therapy certification) who can examine you for symptoms of lymphedema, take baseline measurements, and educate you on monitoring and self-care. Unfortunately, many at-risk patients are not able to find a suitable therapist in their area, or cannot afford a consult, or simply do not have the motivation to seek one out – because thankfully the majority of breast cancer patients will not develop lymphedema. If you find yourself in this boat, this article is for you.
Here we offer you four easy and reasonably reliable tests for monitoring and self-diagnosing lymphedema of the arm after breast cancer treatment.
Short on time? You can skip ahead to learn how to perform the tests:
- 1 What will you learn from reading this article?
- 2 Why should you learn how to self-diagnose lymphedema?
- 3 Test #1: Monitoring for visual symptoms of lymphedema (a classic test)
- 4 Test #2: Stemmer’s and Pitting Tests (classic tests for self-diagnosing lymphedema)
- 5 Test #3: Quantitative Patient Perception Calculator (a new test to self-diagnose lymphedema)
- 5.1 How we made our Patient Perception Calculator and why it’s an improvement over simply watching for feelings of heaviness and swelling:
- 5.2 Performing Lymphedema Test #3
- 5.3 What if one scale suggests I might have lymphedema but the other does not?
- 5.4 What if I feel changes in both arms?
- 5.5 Limitations of this test:
- 6 Test #4: Patient Arm Volume Risk Estimator (a new test to self-diagnose lymphedema)
- 7 Frequently Asked Questions
- 7.1 What if I had bilateral (both sides) cancer treatment?
- 7.2 One of the four tests suggests I might have lymphedema, but the others do not, am I at risk?
- 7.3 What do I do if I think I might have lymphedema?
- 7.4 I don’t think I have lymphedema. When can I stop watching for it?
- 8 References
What will you learn from reading this article?
Here we will show you the right way to perform four tests: two classic tests for self-diagnosing lymphedema of the arm that are very easy to perform but are not very sensitive at detecting early lymphedema; and two new tests that we have adapted from recent clinical studies and turned into handy lymphedema risk ‘calculators’. While all four tests can be useful, our two new tests should offer you the best opportunity for diagnosing lymphedema early. All four tests are designed to detect hallmark lymphedema symptoms that might otherwise go unnoticed, and versions of these same tests are commonly used to support a professional lymphedema diagnosis. If after performing these tests you believe that you may have lymphedema, you should pursue a professional diagnosis and advice from a qualified healthcare practitioner.
The four tests for self-diagnosing lymphedema
- Test #1: Monitoring for visual symptoms of lymphedema (a classic method)
- Test #2: Monitoring for tactile symptoms of lymphedema using Stemmer’s and Pitting tests (classic methods)
- Test #3: Monitoring for sensation symptoms of lymphedema using our Quantitative Patient Perception Calculator (a NEW test)
- Test #4: Monitoring for volume symptoms of lymphedema using our Patient Arm Volume Risk Calculator (a NEW test)
You can click on the links above to skip ahead to learn how to perform the tests, or keep reading below if you’re still not convinced that you should learn how to self-diagnose lymphedema.
Why should you learn how to self-diagnose lymphedema?
Because it is surprisingly common, it can present significant quality of life concerns, and catching it early is extremely beneficial.
Estimates vary, but somewhere between 10% and 34% of breast cancer patients who have had axillary lymph node dissection will go on to develop lymphedema of the arm (ref 1,2), and perhaps 3% to 15% of patients who have had sentinel lymph node biopsy (ref 3,4). Lymphedema can also present on the chest wall, trunk, or in the breast itself – stay tuned for a future post on self-diagnosing lymphedema in these areas.
Lymphedema is a chronic and incurable swelling condition caused by lymphatic system damage (often during cancer treatment) or congenital abnormality (present from birth). This damage or abnormality hinders the lymphatic system from performing a vital role: maintaining fluid balance throughout the body. The result is a gradual accumulation of lymph fluid in the affected tissue or limb and susceptibility to infection. If left unmanaged, swelling will naturally worsen with time, and will initiate other more permanent tissue changes including fat accumulation, fibrosis (scarring) and skin hardening. Here you can read more about the stages of lymphedema.
As you might expect, early detection combined with appropriate symptom management practices can be effective at reversing swelling at early stages, preventing further disease progression, and improving quality of life (ref 5), as well as decreasing associated healthcare costs (ref 6). An early lymphedema diagnosis also makes treatment easier – the recommended treatment for lymphedema, known as Combined Decongestive Therapy (CDT), has been shown to be most effective at early stages of the disease. In contrast, in advanced lymphedema CDT is often unable to reduce swelling, instead helping to limit further progression, and for very advanced cases, specialized liposuction may be necessary to help reduce disability, infection risk (cellulitis), and disfigurement.
An early lymphedema diagnosis can help simplify self-management, prevent disease progression, increase treatment effectiveness, and improve outcomes.
Better lymphedema awareness and screening of at risk populations (especially breast cancer patients) is vital. However, this will not be sufficient to catch all cases of lymphedema early. This is because the time of onset of lymphedema varies person-to-person depending on a whole host of factors including the type and extent of surgery, radiation and chemotherapy, patient body weight, environmental stresses that might initiate onset, and what appears to be a genetic predisposition for some women (check out our early efforts for a do-it-yourself genetic test for lymphedema risk after breast cancer). It can take months, or in some cases even years before symptoms first arise.
The importance of self-screening in at-risk populations is underrecognized, and patient tools for self-diagnosing lymphedema have been lacking. Below we will show you four evidence-based ways to monitor yourself for early symptoms of lymphedema.
Test #1: Monitoring for visual symptoms of lymphedema (a classic test)
The first visual sign of lymphedema is unexplained swelling in one arm that usually appears during the day or with physical activity and goes away with elevation or overnight.
The usual way that patients discover they have lymphedema is simply by noticing unexplained swelling in the arm on their breast cancer side compared to their other arm, and asking their doctor about it. But since this early swelling usually starts small and will often go away if the arm is elevated or after sleeping, an uninformed patient might miss it or ignore it at first. This is detrimental. The sooner it is noticed, the sooner professional advice can be sought, the sooner treatment and self-management can be initiated, and the better your outcome.
Hopefully you were told by your health care team to watch for swelling after your breast cancer treatment. Although it can be challenging to detect early lymphedema visually, this test is very easy to perform, and with a few helpful pointers can be made reasonably effective. Below I describe the best way to visually monitor for lymphedema.
Performing Lymphedema Test #1
Here’s how you can detect early lymphedema visually:
- Follow the flowchart below to monitor yourself for visual signs of early lymphedema. Since very early stage lymphedema is often not noticeable in the morning, visually compare your arms at the end of the day, such as before bed.
- When you inspect your arms, look at the full length of them, including the forearms and hands. In my experience, breast cancer patients might first notice swelling in their upper arms, forearms, or hand – everybody is different. Forearms tend to have less fat and more distinguishing landmarks (veins, tendons, curves) that can make early detection by visual inspection easier. However, it’s important to note that breast cancer related lymphedema symptoms can vary significantly between patients. Some patients find noticeable swelling only in their fingers or the back of the hand, while others with advanced lymphedema may only experience swelling in their upper arm and nowhere else. Some patients don’t experience swelling in their arm at all and only experience swelling in the breast or on their trunk – more on this in an upcoming post.
What if both arms or hands look swollen?
Bilateral arm lymphedema (lymphedema that effects both arms) should only occur if you have undergone cancer treatment on both sides of your chest. If your treatment was limited to only one side, yet both of your arms or hands appear swollen, the cause is not likely lymphedema. You should speak to your doctor if you are experiencing whole-body or multiple-limb swelling.
Limitations of self-diagnosing lymphedema visually using the above tool:
- This test is not specific for swelling caused by lymphedema. In other words, observing swelling in your suspected arm doesn’t mean for certain that you have lymphedema. Although it is unlikely, swelling that appears only in your at-risk arm could be caused by an unrelated issue such as an injury, infection, insect bite, or local venous insufficiency/blood clot.
- The sensitivity of this test for detecting small changes depends your ability to notice small differences – which can be difficult. Noticing small differences can be especially challenging for larger arms that have more fat tissue, or for lymphedema that occurs only in the upper arm. What if you’re uncertain about seeing swelling? Seeking out professional advice is advisable, but if you feel like you need something a little more definitive first, you could try our Patient Arm Volume Calculator below (Test #4). This test can be more reliable, and can offer you something more quantifiable to discuss with your health care provider.
- You cannot formally self-diagnose lymphedema using this test; lymphedema diagnosis can only be made by a qualified healthcare practitioner. This test is intended only as an aide to help breast cancer patients monitor themselves for early signs of lymphedema. The results of this test are not definitive. If this test suggests that you show symptoms of lymphedema, you may or may not have lymphedema, and you should discuss your results with a qualified healthcare professional. Conversely, if this test suggests that you do not have lymphedema, it’s still possible that you do, or that you may develop it in the future.
Test #2: Stemmer’s and Pitting Tests (classic tests for self-diagnosing lymphedema)
“Stemmer’s” and “pitting” tests are two lymphedema tests that are typically best used for determining the stage of lymphedema, or for differentiating between lymphedema and other forms of swelling (such as chronic venous insufficiency) rather than for self-diagnosing early lymphedema. With that said, they are easy to perform and can be informative for some patients.
Performing Lymphedema Test #2
Here’s how you can self-diagnose lymphedema using Stemmer’s and Pitting tests:
- Stemmer’s test (or “Stemmer’s sign”)
- Pinch and lift the skin on the top of your middle finger close to the knuckle (Figure 1). Perform this test on both your hands and compare.
- If you can lift this skin to the same extent and with the same pliability on both hands, then you are not showing signs of lymphedema of the hand, however you may still show symptoms of lymphedema elsewhere. Conversely, if the flesh on your suspected hand feels more solid and you have difficulty (or can’t) lift the skin compared to your other hand, then you are likely showing signs of lymphedema. This test looks for the presence of swelling and fibrotic tissue in the hand. Swelling arising from other causes such as venous insufficiency does not typically include fibrosis and should not produce a positive test result.
- If the result appears to be positive, try the other tests in this article to investigate your condition further, and consult a lymphedema specialist. If negative, continue to routinely monitor yourself for early signs. Self-monitoring should include using one or more of tests 1, 3 and 4, since these tests aren’t limited to the hand.
- Pitting test
- Pitting can be evaluated by pressing the thumb with deep pressure into the area of suspected swelling (as hard as is tolerable).
- If the suspected swelling is due to a buildup of fluid this procedure should leave a temporary thumb print (‘pitting’), indicative of early stage lymphedema (see Figure 2). This indent will gradually fill in with fluid and disappear. If no pitting occurs (no indent is made), then the area does not exhibit signs of significant fluid accumulation. This might suggest that either there is no swelling, that the swelling present is too small to be detected by this test, or that you have an advanced stage of swelling where fat accumulation and/or tissue hardening has occurred – but by this stage it’s likely you would have already discovered your lymphedema.
- If the pitting test result appears positive and an indent is visible, try the other tools below to investigate your condition further, and consult a lymphedema specialist. If negative, routinely monitor yourself for early signs using one or more of the tools described in this article, in particular tools 1, 3 and 4.
Limitations of the Stemmer’s test and Pitting test:
- Stemmer’s test is specific for detecting lymphedema, but only when it involves the hand. Many cases of early breast cancer related lymphedema do not involve the hand at all.
- The pitting test does not detect early lymphedema and is only positive when significant fluid accumulation has already occurred. It is also not specific for lymphedema – it does not differentiate between lymphedema and swelling due to other conditions. If pitting occurs in both arms you are likely suffering from an unrelated condition and you should speak to your doctor to determine the cause.
- You cannot formally self-diagnose lymphedema using these tests; lymphedema diagnosis can only be made by a qualified health professional. These tests are intended as an aide to help breast cancer patients monitor themselves for symptoms of lymphedema and are not definitive on their own. If you perform these tests and get a positive result, you should pursue a consultation with a qualified healthcare professional to get an official diagnosis. Alternatively, if these tests give you a negative result, it is still possible that you have lymphedema, or that you may develop it in the future. On-going monitoring is advised.
Test #3: Quantitative Patient Perception Calculator (a new test to self-diagnose lymphedema)
Click here to skip ahead to performing Test #3. Or keep reading for more insight into how and why this test works.
Feelings of heaviness or swelling in the arm can be among the very first symptoms of lymphedema. Studies suggest that some people may even be able to perceive arm sensation changes before measurable arm volume differences appear (ref 8). However, not everyone who has lymphedema experiences sensation changes in their limb, and certainly not everyone with sensation changes in their arms have lymphedema. Even though this approach lacks sensitivity (it can’t identify all cases of lymphedema) and lacks specificity (people without lymphedema can report these feelings too), it is still recommended that healthcare practitioners discuss feelings of heaviness and swelling during routine monitoring of at-risk patients (ref 9). What about for self-screening?
Thinking about how your arm feels is quick and easy to do, but how do you know if your arm feels heavy or swollen enough for it to be lymphedema? How can you feel confident that what you’re feeling reflects an actual change in your arm? Could these sensation changes in the arm merely be a side effect of chemotherapy or other cancer treatment? Perhaps your arm felt unusual a couple of days ago, but feels fine in this moment – what does that mean? This ambiguity has reduced the usefulness of asking patients to self-monitor for feelings of heaviness or swelling. However, we think this approach has unrealized potential as a self-screening test, and recent clinical data suggests ways that it might be improved: first, by asking patients to rate how much they feel sensation changes (thus making it quantitative), and second, by establishing a ‘cutoff’ level to help distinguish between small sensation changes that are not likely to be lymphedema and larger sensation changes that are.
Our Patient Perception Calculator below incorporates both these enhancementsand should be an improvement over simply “watching for feelings of heaviness / swelling”. We built it with the help of published clinical data and discussions with one of the clinical researchers involved in this research. In the next few paragraphs I’ll describe the approach we took in developing this test, but feel free to skip ahead to performing the test.
How we made our Patient Perception Calculator and why it’s an improvement over simply watching for feelings of heaviness and swelling:
As you would expect, patients with lymphedema typically feel more swollen/heavy when they have more swelling, and patients without lymphedema tend to report lower levels of these feelings (ref 8, 10). So, quantifying these sensations as a means of screening for lymphedema appears to be a promising approach. But how heavy or swollen must your arm feel, for it to correlate with the presence of lymphedema? Devoogdt et al. did a good job at distinguishing between lymphedema and ‘normal’ arm sensations using a patient questionnaire they developed (called “Lymph-ICF”). This questionnaire asked patients to score their symptoms, including any feelings of heaviness and swelling, on a scale of 0 to 100 (ref 10). They established that a score of 25 out of 100 was fairly reliable at distinguishing between people with established lymphedema and people without lymphedema. In other words, patient perception of arm sensation changes can be reliably quantified, and a reasonable cutoff between lymphedema-related feelings and normal feelings, can be established. But can this test be a reliable indicator of early lymphedema onset? The Devoogdt research group didn’t attempt to answer this question, so further research was needed.
Thankfully, a recent and very interesting study by Hidding et al., attempted to answer this question (ref 11). Unlike previous studies to investigate the relationship between changes in arm sensation and arm volume, participants in this recent study were all actively undergoing breast cancer treatment and did not yet know if they would go on to develop lymphedema. This makes it is a nice study design to evaluate the effectiveness of Devoogdt’s tool as a means of detecting early lymphedema. What did the Hidding et al. group find? When they used the Devoogdt scale of 0 (none at all) to 100 (very much), they found that many participants without any signs of lymphedema were scoring their feelings of heaviness and swelling higher than the cutoff of 25. In other words, as a diagnostic tool the authors decided the Devoogdt scale and cutoff wasn’t sufficiently reliable for detecting early lymphedema symptoms. But could it be improved to do so? Judging by the data presented in the Hidding et al. paper, it looked like it could be.
We contacted Janine Hidding, the primary author of this recent paper to discuss. Based on their unpublished observations, patients recently treated for breast cancer (within 1 month of treatment completion) and who didn’t have lymphedema, tended to experience greater ‘feelings of heaviness and swelling’ than the patients without lymphedema in the Devoodgt et al. study. Similarly, patients in the Hidding et al. study who did have lymphedema scored their feelings higher than patients with lymphedema in the Devoodgt et al. study. In other words, the Devoodgt et al. cutoff of 25 appears to be too low to be used as a reliable test for early onset lymphedema following breast cancer treatment.
Interestingly, by the third month post-treatment patient-reported arm sensations appeared to lessen, in particular scores of ‘heaviness’. These observations might suggest an effect of the cancer treatment itself on arm sensation, one that is independent of the presence of lymphedema. Or perhaps sensation changes in patients with new onset lymphedema may be more pronounced than sensation changes in patients with long-standing lymphedema. Not surprisingly then, their unpublished data suggested that a higher cutoff, around 40, may offer a better balance of sensitivity (ability to detect people with lymphedema) and specificity (ability to exclude people without lymphedema) in the early onset population.
In our patient tool below, we conservatively combined the Hidding et al. findings with the Devoogdt et al. approach to create a multi-tiered lymphedema risk-scoring system that patients can use to monitor their symptoms.
Here’s how it works: for patients who have recently been treated for breast cancer we used a symptom rating cutoff of 40 to signify ‘enhanced risk’ of lymphedema. We also kept the original cutoff of 25, as an indicator of ‘some risk’. For patients who have not recently been treated for breast cancer, our tool reverts to the original Devoogdt et al. scoring system. It’s likely that we have been overly conservative in this approach – meaning that the test will error on the side of telling you that you have lymphedema when you don’t (false-positive), rather than erring on the side of telling you that you don’t have lymphedema when you do (false-negative). Nevertheless, it should still represent an improvement over the original Devoogdt et al. scale and is certainly a better approach than simply asking patients to watch for symptoms without offering them a systematic scoring tool. Of course, our tool requires clinical validation (as would the Devoogdt et al. scale for this application), but we feel comfortable offering it here because it is quick, safe and easy to perform, and we feel it offers value as a self-screening tool.
Use the calculator below to screen for lymphedema symptoms by reporting your feelings of “heaviness” and “swollenness”.
Performing Lymphedema Test #3
Here’s how you can self-diagnose lymphedema by scoring your feelings of swelling / heaviness using the risk calculator below:
- Select YES or NO as to whether or not you have had breast cancer treatment within the last 3 months (which includes chemotherapy, surgery, and/or radiation). Why does this matter? Because patients recently treated for breast cancer treatment appear to frequently score high on these scales even in the absence of lymphedema, so we’ve adjusted the risk calculation accordingly.
- Slide the button on the scale to rate your feelings of arm “swelling” and “heaviness” during the last two weeks in your suspected arm compared to your good arm. Since early lymphedema symptoms may come and go, your feelings in the moment you take this test might not be reflective of what you’ve been experiencing recently. Therefore, consider an overall rating for the past 2 weeks. It’s also best not to think too hard about the questions, or to discuss it with others who may bias your scoring.
- Press “calculate” and read your results.
- If the result suggests that you have a risk of having lymphedema: try Tool #4 below to investigate your condition further, and ideally consult with a lymphedema specialist. Remember, this test is NOT perfectly reliable. For some patients this test will incorrectly indicate the presence of lymphedema even when no lymphedema is present.
- If the result suggests that you do not have lymphedema: routinely monitor yourself for early signs using Tools 1, 3 and 4. Remember, this test is NOT perfectly reliable. For some patients this test will incorrectly indicate that no lymphedema is present even when it is.
What if one scale suggests I might have lymphedema but the other does not?
These calculators do not cancel each other out. People interpret feelings in their arms differently. If either or both scales give you a positive result, you should consider the possibility that you are showing signs of lymphedema in your arm.
What if I feel changes in both arms?
If you think you feel similar sensations in both arms, then it is not likely due to lymphedema unless both sides of your chest have been treated (for example, removal of lymph nodes, radiation, etc.).
Limitations of this test:
- The underlying basis of this calculator is very simplistic. It simply compares your reported feelings against one or two cutoffs. According to the Lymph-ICF questionnaire from which it was derived, if you report feelings beyond the cutoffs then your it may reveal a significant issue. Furthermore, the scale used for this test is normally 10 centimeters long when administered in a printed format. Depending on the type of screen you are using to view this webpage, our scale may appear to be longer or shorter than 10 centimeters, and this may impact its resolution, and therefore the reliability of this test.
- Patient perception of changes in arm sensation is highly variable. Some patients with lymphedema don’t report arm sensation changes at all, while other people without lymphedema do report arm sensation changes. Studies have found this patient perception approach to be only moderately reliable as an indicator of true lymphedema.
- You cannot formally self-diagnose lymphedema using this tool; lymphedema diagnosis can only be made by a qualified healthcare professional. This tool is intended as an aide to help breast cancer patients monitor themselves for early signs of arm lymphedema. The results of this test are not definitive. If this test suggests that you show early symptoms of lymphedema, you may not in fact have lymphedema, and you should discuss your results with a qualified healthcare professional. Alternatively, if this test suggests that you do not have lymphedema, you may still have lymphedema, or develop it in the future.
Test #4: Patient Arm Volume Risk Estimator (a new test to self-diagnose lymphedema)
Click here to skip ahead to performing Test #4. Or keep reading for more insight into how and why this test works.
An increase in limb size is obviously one of the best indicators of the presence of lymphedema. So how do you know if your arm has gotten bigger? The standard approach to screening for lymphedema involves comparing the size of your suspected arm to your unaffected arm, or, comparing its size to a baseline measurement (ideally taken pre-operatively). How much bigger is considered significant? Given we all have naturally occurring differences in arm size, an increase in size is generally only considered to be significant under the following circumstances: when there is either a 2cm increase in arm circumference, a 200ml increase in arm volume, or a 10% increase in arm volume (ref 12, 13). The first two measurement approaches are less reliable for diagnosing lymphedema because they use absolute differences that don’t take into consideration the base size of the person’s arm. In other words, a 2cm or 200 ml difference for someone with a very large arm is less significant than the same difference in a small arm. Circumference measurements also depend greatly on which part of the arm is being measured (some areas of the arm don’t tend to be reliable for monitoring changes), and measurements must be taken at precisely the same location on each arm (and over time, for on-going monitoring). For these reasons, a 10% increase in arm volume is generally considered to be the most reliable indicator of lymphedema. How do we measure limb volume? Limb volume can be measured by water displacement or calculated by measuring arm circumference at multiple fixed points along the arm using a “conical” formula. Unfortunately, measuring and calculating volume differences accurately can be challenging even for health care practitioners, and certainly is not user-friendly nor reliable for patients to use for self-monitoring purposes.
To address this, a recent study by Hidding et al. developed and evaluated a new approach to self-monitoring arm volume changes that is simpler to perform while still being reliable (ref 11). To help make this new approach more accessible for individuals to use for self-monitoring, we turned it into a handy calculator below.
Here’s how and why it works
The goal of the Hidding et al. study was to see if a location existed on the arm where a single circumferential measurement could be used as a reliable indicator of arm volume, and then establish a reliable cutoff for that measurement which would correlate with a 10% increase in arm volume (the benchmark for lymphedema). To account for baseline differences between patient arm sizes, this difference was calculated as a % difference between the suspected and unaffected arms (or between the suspected arm and baseline/pre-operative measurements of that same arm). The results look very promising. The authors found that a 4% increase in arm circumference at their designated measurement location predicted a 10% increase in arm volume quite well (for those of you with knowledge of medical diagnostics, this test demonstrated a sensitivity and specificity of 0.85). Further to this, the authors reported that this test was still robust when factoring in arm dominance (dominant arms tend naturally to be bigger) and was a better diagnostic tool than patient scores for feelings of ‘heaviness’ or ‘swelling’ (which roughly judging by their data might reach a sensitivity and specificity of 0.7). The measurement location they identified also matches that of an earlier study that found the same site to be the most accurate for measurement purposes (ref 14).
Performing Lymphedema Test #4
Here’s how you can self-diagnose lymphedema by detecting an increase in arm volume using a simple circumferential measurement. The calculator below compares your good arm to your suspected arm, but you can also use it to track changes in your suspected arm over time.
- Measure your arms
- Measure your arms in the evening. Early onset lymphedema can come and go with your daily activities and tends to be most pronounced at the end of the day. Sticking to one time of day to do the measurement is also important if you want to track your arm volume over time.
- Measure the circumference of your arms at a specific location: “30 cm proximal to the styloid process”. In other words, 30 cm up from the little bump on the outside of your wrist. The easiest way to do this is to make a small pen mark on the top of the bump, measure 30 cm up from the bump (which will be just above your elbow) and mark this point. This is the point where you will measure your arm circumference (distance around your arm). You can see what this looks like in Figure 3 below. You can also use this approach to compare measurements of your suspected arm over time.
- Measure the circumference of your arm using a flexible tape measure (like the one a seamstress uses). It would be easiest and most accurate to have someone help you with this. Make sure the measuring tape goes straight around your arm rather than on an angle. Also, do not pull the tape too tightly when measuring- you don’t want to squeeze your arm with the tape measure.
- Plug your measurements into our calculator below and press “calculate” to read your result.
Limitations of this test:
- The test requires that you measure your arms with good accuracy. The good news is that it looks like people can be quite good at doing this fairly reliably (ref 15), but the bad news is that your results are only as good as your measurements. Getting someone to help you (and preferably always the same person) could significantly improve your measurement accuracy.
- Sometimes lymphedema can appear exclusively in the hand or forearm. This test will not be an effective screen for lymphedema that is compartmentalized in this way.
- You cannot formally self-diagnose lymphedema using this tool; lymphedema diagnosis can only be made by a qualified healthcare professional. This tool is intended as an aide to help breast cancer patients monitor themselves for early symptoms of lymphedema. The results of this test are not definitive. If this test suggests that you show early signs of lymphedema, you may or may not have lymphedema, and you should discuss your results with a qualified healthcare professional. Alternatively, if this test suggests that you do not have lymphedema, you may still have lymphedema, or may develop it in the future.
Frequently Asked Questions
What if I had bilateral (both sides) cancer treatment?
If you had cancer treatment involving both breasts, then it is possible for you to have lymphedema in one or both arms. This should be kept in mind when performing the above tests.
One of the four tests suggests I might have lymphedema, but the others do not, am I at risk?
It might mean that you do not have lymphedema, or that you may have caught it early. Test #4 is the most reliable test for lymphedema, but the performance of this test depends on the accuracy of your measurements. If one of these tests suggests that you may have lymphedema, you should follow the steps we have outlined below.
What do I do if I think I might have lymphedema?
1) Seek out professional lymphedema diagnosis and treatment
You may wish to do this by seeking out a referral to a lymphedema specialist through your family doctor, or by directly seeking one out on your own. A history of your cancer treatments and swelling/symptoms onset, visual inspection, palpation, and measurement are usually sufficient for a professional lymphedema diagnosis, although other diagnostic approaches may be warranted and undertaken.
A therapist trained in of combined decongestive therapy (CDT), the internationally recognized and recommended treatment for lymphedema, can help you reduce your symptoms and better manage your condition to prevent progression and maintain a high-quality of life.
2) Take steps to avoid exacerbating your symptoms and watch for infection
If you suspect that you have lymphedema, please see “Patient Guide: Lymphedema Symptoms, Prevention and Management”.
While you await a formal diagnosis, you should attempt to avoid injections/needles, overheating, infection and injury to the suspected arm – these can make swelling worsen. You should also watch for signs of infection such as redness, heat and soreness in the arm, as well as fever/muscle aches/other signs that the body is fighting an infection. Prolonged swelling weakens the local immune system, as does the removal/irradiation of lymph nodes, thus increasing your susceptibility to skin infection (cellulitis). In the longer-term, regular exercise and maintaining a healthy body weight can be very beneficial to managing lymphedema signs and symptoms.
Special garments or bandages are used as part of combined decongestive therapy to compress the arm and prevent lymphatic fluid accumulation. I am often asked for advice on purchasing compression garments by people who live in areas where local expertise doesn’t exist (or is otherwise inaccessible), or by those who suspect they have lymphedema but who have not yet received a formal diagnosis. Self-prescription of compression garments is certainly not optimal – you may require or benefit most from a specific level of compression, a specific style of compression, or compression only after some volume reduction through manual lymphatic drainage. Given that each person’s swelling characteristics, lifestyle, and preferences are different, without an in-person evaluation it is difficult to give personalized advice.
However, if you have difficulty accessing care, or strongly suspect that you have lymphedema of the arm and wish to be proactive in your self-management, you may consider purchasing a ‘generic’ off-the-shelf compression garment that offers a relatively low-level of compression, such as the Jobst Bella-Lite, as seen the image below. However, this type of compression garment would not be suitable if you are also experiencing swelling in your hand. [Small disclaimer: if you purchase an item through this link we may receive a very small fee which we use to help support our blog, but feel free to look around for a garment that suits you best. Better yet, ask a local CDT therapist for personalized advice before purchasing a garment.]
If you do decide to wear a compression garment, it is advisable to wash it every day or two by hand, so that it maintains its shape and elastic properties, and discontinue its use immediately if you experience skin sensitivity, friction areas or sores, pain or discomfort, an increase in swelling anywhere in your arm or hand, or if you shows signs of an infection in the arm (as previously discussed). As an aside, compression garments can be quite effective at reducing swelling symptoms, so if you are going to seek a professional assessment for the first time, it may be best not to wear the compression garment for a day or so prior to the visit.
3) If you think you might have lymphedema symptoms, do not wait to see if they worsen
If you do have early lymphedema and it remains unmanaged, it will typically progress over time. In the initial stage of the condition (Stage 0) there are no visible signs of the underlying lymphatic insufficiency. Stage I begins once lymphatic fluid starts to accumulate – this is the ideal time to initiate treatment, and early treatment can vastly improve outcomes and prevent the condition from worsening. Stage I may begin immediately following cancer treatment, or may first appear sometime in the future, perhaps only after an event that increases fluid transport demands in the tissue, such as overuse, overheating, infection, injury, weight gain, local infection, etc. During this stage the swelling is mostly transient, coming and going on its own. Unfortunately, prolonged or untreated swelling makes the situation worse. It promotes scar tissue formation and further lymphatic damage, encourages the body to accumulate adipose tissue (fat) in the affected area, causes skin changes to occur including hardening and fibrosis, and increases infection risk by locally suppressing the immune system (Stage II). In the most advanced stage of lymphedema (Stage III) significant swelling is present and is associated with marked tissue changes, and functional disability. Combined decongestive therapy can no longer be used to reverse the swelling in cases of Stage III lymphedema, and more invasive procedures such as liposuction might be warranted.
I don’t think I have lymphedema. When can I stop watching for it?
Most cases of lymphedema resulting from breast cancer treatment occur soon after treatment, with perhaps as many as 75% of cases appearing in the first year (ref 16), and the vast majority appearing within the first three years (ref 17). But some cases can take many years before they surface. There have been documented cases appearing as late as 20 years post cancer treatment (ref 18).
The four self-tests described in this article can be used to easily and effectively monitor your arm for symptoms of lymphedema. We recommend monitoring yourself regularly (perhaps every 2 weeks) for at least the first year, and ideally for the first two to three years. Thereafter, regular monitoring is likely not warranted, but you should keep lymphedema in the back of your mind should any warning signs arise.
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