What is the average patient’s experience of head and neck lymphedema? Am I a ‘typical’ case, or somehow unique?
You may suspect that you have lymphedema in your head or neck, or perhaps you’ve been formally diagnosed with it. But often patients with lymphedema have little exposure to others with the condition. Your family physician or other healthcare specialists may also have had little exposure to it. (For more information on the condition please see: “Patient Guide: Head and Neck Lymphedema Following Cancer Treatment”)
This can feel a bit isolating. As a result, patients with lymphedema who come to see me often ask: “Am I like the other patients you see?”
The simple answer to this question is usually yes. Patients with lymphedema in the same area of the body typically experience the same physiological changes, a progression of the condition, and associated symptoms. This is fairly consistent across patients even if the underlying cause of the lymphatic insufficiency differs.
But I know that patients are often meaning to ask me a more nuanced question: “Are there other people experiencing this condition in the same way as me? Or am I unique in my experience?”
Is my experience of Lymphedema unique, or am I like everyone else?
So how does the ‘average’ patient with head and neck lymphedema experience their condition during the period of time when they are first coming to understand it and learning to manage it?
I was curious to find out, so I had a look through the literature to find the largest study that included details about how the patients first present clinically.
The largest study I found was a cohort of 1255 patients treated for Head and Neck Cancer at the University of Texas MD Anderson Cancer Centre and referred to their Lymphedema Program for evaluation of presumptive head and neck lymphedema (ref1). Of those 1255 patients, 53 were excluded from the study because they didn’t have head and neck lymphedema, or didn’t have a diagnosis of head and neck cancer.
So how similar are these patients’ experiences of head and neck lymphedema? The results are illuminating, in part because this information isn’t widely known.
How does head and neck Lymphedema usually present upon the first diagnosis?
At the MD Anderson Cancer Center (MDACC) in Texas, 1202 patients treated for head and neck cancer presented with head and neck lymphedema. These patients typically had a diagnosis of squamous cell carcinoma, and almost three-quarters had tumour sites in either the oropharynx, oral cavity, or larynx. Over half of patients had lymph node dissection, and over half were treated with both surgery and radiation.
In the tables below you can see the characteristics of these patients when they first presented at intake to the MDACC Lymphedema Program and were confirmed to have lymphedema.
Clinical stages of head and neck Lymphedema
As you can see from Table 1, most patients were first confirmed to have lymphedema while they were in stage 1b of the MDACC head and neck lymphedema grading scale. It is interesting to see that even at a seemingly excellent centre for head and neck cancer treatment, identification of patients at early stages of lymphedema is still challenging.
|Stage of lymphedema (MDACC scale)||% of patients|
|0||No visible swelling, but feelings of heaviness.||1 %|
|1a||Soft visible swelling that is reversible and that is without ‘pitting’. So when you press the area of swelling with your finger it does not leave an indentation behind.||28 %|
|1b||Soft visible swelling that is reversible, with ‘pitting’. So when you press the area of swelling with your finger it leaves an indentation that persists for a short period.||62 %|
|2||Firm visible swelling that is irreversible, but there are no tissue changes such as skin bumpiness and thickening.||9 %|
|3||Firm visible swelling that is irreversible and accompanied by tissue changes.||0 %|
Table 1: Patient stage of lymphedema as assessed at intake into the MDACC Lymphedema Program. Data is shown for 1202 MDACC head and neck cancer patients referred to the program with presumptive diagnosis of head and neck lymphedema. Smith 2015 (ref1).
Sites of head and neck Lymphedema
At first diagnosis, the most common site for swelling was found to be the neck and the area under the chin (known as the submental space).
|Site of lymphedema (patients could have more than one site affected)||% of patients|
|Submental space (the area underneath the chin)||89 %|
|Intra-oral (inside the mouth)||18 %|
Table 2: Patient site of lymphedema as assessed at intake into the MDACC Lymphedema Program. Data is shown for 1202 MDACC head and neck cancer patients referred to the program with presumptive diagnosis of head and neck lymphedema. Smith 2015 (ref1).
Symptoms of head and neck Lymphedema
Most patients accepted into the MDACC Lymphedema Program were found to have cosmetic concerns and feelings of discomfort with respect to their swelling. But as you can see from the table below, many patients also experienced functional issues.
As a patient progresses through the stages of head and neck lymphedema, their symptoms will get progressively worse. Keep this in mind as you read the below table, if you are in stage 1, cosmetic and functional deficits would be rare, but in stage 2 they would be highly likely. The table represents the response of all patients in the program.
|Patient Symptoms||% of patients|
|Cosmetic concerns (patients were self-conscious about their appearance)||83 %|
|Feelings of discomfort||64 %|
|Functional deficits||37 %|
|i. Swallowing||25 %|
|ii. Breathing||15 %|
|iii. Speaking||11 %|
|iv. Vision||2 %|
Table 3: Patient reported symptoms of lymphedema as assessed at intake into the MDACC Lymphedema Program. Data is shown for 1202 MDACC head and neck cancer patients referred to the program with presumptive diagnosis of head and neck lymphedema. Smith 2015 (ref1).
Does this population really represent me?
Looking at the above tables you may find that your experience places you into one of the smaller groups, or as an outlier altogether. If so, don’t feel disheartened, this population may not be representative of you.
For example, this group of patients had secondary lymphedema arising from cancer and cancer treatment. If you have primary head and neck lymphedema (ie, arising naturally), there may be differences in your experience of lymphedema.
But that’s not all, people in this population fit a fairly narrow mould: 80% were caucasian, and 80% were male. They all also came through the same health care system, which may be more or less intensive in their treatment of head and neck cancer when compared to the centre where you were treated (which can impact rates of lymphedema). The MDACC may also be better or worse at identifying new cases of head and neck lymphedema as compared to other cancer treatment centres. These and other differences could skew the characteristics of this population of patients.
Further to this, there exist a variety of risk factors for lymphedema, which (for breast cancer patients) includes having a high Body Mass Index (BMI) and genetic predisposition (read more here). Such risk factors may differ between you and the population characterized above.
Take home message
In my practice, patient experiences of lymphedema are usually a lot more similar than patients seem to expect.
When you read the above you might feel like you’re one of many or one of few. But rest assured, there are many patients experiencing this condition just like you are. As many as 50% of patients treated for head and neck cancer develop lymphedema (ref2), so there are a lot more patients out there affected by this condition than it might otherwise appear.
Feel free to share your experiences, or ask me a question. Sharing is caring 🙂
- Smith B.G., Hutcheson K.A., Little L.G., et al. Lymphedema outcomes in patients with head and neck cancer. Otolaryngol Head Neck Surg. 2015 Feb;152(2):284-91.
- Deng J., Ridner S.H., Dietrich M.S., et al. Prevalence of secondary lymphedema in patients with head and neck cancer. J Pain Symptom Manage. 2012 Feb;43(2):244-52.