In the Western world, the main cause of lymphoedema is cancer and cancer-related treatments.
Compromises to the working of the lymphatic system can occur due to:
- Tumours causing blockages in lymphatic pathways, or in lymph nodes
- Removal of lymph nodes
1. Tumours cause a mechanical blockage to the flow of lymphatic fluid, causing buildup of fluid not only in the area of the tumour itself, but also in the whole body area surrounding the tumour.
The body is divided into regions, each region draining to a specific set of lymph nodes – these are known as lymphotomes. For example, if you imagine dividing the front of your body in half lengthways, and then again at the waist, you will have four sections, and each of these drain to different lymph nodes. The two top sections drain to the armpit nodes (axillary nodes), left and right, and the two bottom sections drain to the groin nodes (inguinal nodes), left and right. The back of the body also drains to these same lymph nodes.
A blockage in any of these sections will affect the drainage of fluid in the whole section, not only in the area where the tumour is situated. If we think of a stream of water, with a blockage due to a tree trunk, or rocks, we know that that the flow of water is not only affected at the point of the blockage, but also further downstream.
2. Once lymph nodes have been removed, for example in an axillary/inguinal node dissection, once again the system is compromised – the fluid cannot move through the nodes in that area, as they are no longer present, and so it stagnates in that area, and also starts pooling in the area below and around it – in the case of an axillary node dissection, into the arm, and maybe breast and trunk, and in the case of inguinal node dissections, into the leg, and maybe the buttocks and genitalia as well.
Even if not all the nodes have been removed, the remaining nodes can sometimes not cope with the additional work they have to do and thus become overloaded, either functioning poorly, or not at all.
3. Radiation causes changes in the skin texture, as well as scar tissue that can cause blockages in lymph flow and make it harder for the body to build new lymphatic pathways.
4. Chemotherapy, on the other hand, can cause fluid retention in some cases, (eg with the use of steroids). This causes a decrease in the normal functioning of the lymphatic flow, once again predisposing the patient to the risk of lymphoedema.
As we have seen in the lymphoedema section, MLD can help with both lymphoedema prevention, and management.
Education about what to look out for, and what to do if you experience any of the signs and symptoms of lymphoedema, is vital for all cancer patients, no matter where the site/s of the cancer may be.
Statistics about the probability of getting lymphoedema after various surgeries or cancer-related treatments vary a lot, (especially as it is often not diagnosed and thus is under-reported), but they all have one thing in common, and that is that you will always be at a greater risk of developing lymphoedema if the lymphatic system has been compromised in any way. We call this the latent stage, and the primary focus of lymphoedema therapists – in terms of prevention – is to try and ensure that the threatening lymphoedema remains in the latent phase, and does not develop into stages 1, 2 or 3.
How do we help patients that have already developed lymphoedema?
As seen in the lymphoedema section, CLT is the gold standard of lymphoedema management.
However, I would like to explain how MLD in itself (one of the four components of CLT), is used. The trained lymphoedema therapist can help REDIRECT the flow of lymph from one part of the body to another.
For example, in a patient who has had a left-sided mastectomy and axillary node clearance, the lymph from the left armpit can be redirected to the healthy, working nodes in the right armpit – across the chest and across the back. In addition, lymph can also be redirected to the groin nodes on the left. The more places to which the built up fluid in the left arm can be dispersed, the better, as we also have to be careful not to overload another set of nodes.
I always teach my patients how to do this for themselves, as the more they can do at home, the better it is in terms of the management process. Often a partner, carer, or family member will also attend the training session, so that they can help out, as well as remind the patient of this very necessary routine.
In addition, repeated manual drainage of fluid encourages the body to form new pathways – and not only that – it also encourages the fluid in the superficial areas to flow in the right direction. The most superficial lymphatic channels, known as the initial lymphatics, form a fine mesh, or network, just under the skin. However, as there are no valves or muscles in these superficial structures, the direction of flow can easily be changed by a trained MLD therapist. Hence, the therapist and the patient work together to ensure that the lymph flows away from the congested areas, thus also making certain of the best possible outcome.
So, in summary, MLD by a trained therapist will encourage new pathways to be formed, move fluid in the right direction, and lessen the load on already overloaded structures, namely the compromised lymph vessels and nodes.
As a bonus, MLD also stimulates the parasympathetic nervous system – the one that relaxes you. Often undervalued, relaxation is a wonderful addition to other self-care techniques, as it is vitally important for health and rapid healing. Deep, restorative sleep after an MLD treatment is often reported to me by my patients.
You may be wondering why, after having read the above, not every cancer patient at risk of developing lymphoedema is actually referred to a lymphoedema therapist.
In my opinion, it is a combination of many factors.
The main reason is a lack of awareness, in general, of other health professionals. Sometimes the focus is so much on the cancer, which naturally is the immediate priority, that the risk of lymphoedema can seem trivial, and perhaps just another element to cause anxiety in the patient. There are so many things a cancer patient has to deal with, that it can be very overwhelming to be burdened by yet another “maybe” in the future. While this is understandable, it should still be mentioned, and if appropriate, the patient should be referred to a CLT therapist.
The issue of potential lymphoedema has to be dealt with at an appropriate time – when the initial diagnosis and surgery/ treatment regime has been discussed and the patient has been given time to digest all of this. Depending on how soon surgery/other treatments are started, the discussion about lymphoedema is necessary and should be initiated either beforehand, or very soon afterwards.
In my experience it is helpful to have an initial telephonic conversation before booking an appointment with me, so that we can decide on the best timing for the initial consultation, which is mainly educational and preventative in nature.
I will often only see a new patient once they are finished with their surgery and adjuvant therapies, whether radiation, chemotherapy, or both. However, it is helpful for the patient to know that they can contact me at any time to ask questions or discuss their concerns, and also to know that I am in contact with their attending doctor/s. There are many people in the cancer fighting team – the patient, the doctors, family, and the therapist. It is reassuring for the patient to know that if needed, help is available at a later stage. This allows them the time to get to grips with their cancer and all that that entails, as their first priority.
YOU CAN COPE WITH LYMPHOEDEMA!
Cancer patients and survivors with lymphoedema face multiple psychosocial and adjustment issues. Because lymphoedema is disfiguring and sometimes painful and disabling, it can create problems in many aspects of functioning, e.g., psychological, physical, and sexual. Until relatively recently, however, inadequate attention has been directed toward the psychosocial impact of lymphoedema.
Women who develop lymphoedema following treatment for breast cancer encounter more difficulties in each of these aspects than women who do not develop the condition after such treatment. Additionally, because the treatments for upper extremity lymphoedema can be uncomfortable, arduous, and time-consuming, the presence of psychological difficulties can significantly interfere with treatment efforts. Upper extremity pain in women following breast cancer can have a highly complex differential diagnosis. One study has highlighted the deleterious impact of pain on quality of life and coping in patients with upper extremity lymphoedema.
We now also need to highlight the factors associated with psychological distress within patients who develop upper extremity lymphoedema after breast cancer treatment. Risk factors for poor adjustment to the condition include poor social support, use of an avoidant and a reclusive style of coping by avoiding social situations in which their lymphoedema constantly reminds them of their cancer experience, and the presence of pain of any intensity.
Seek support! Find a therapist! Counselling provides specific information about preventive measures, the role of diet and exercise, advice for selecting comfortable and flattering clothing, and emotional support. Have faith! You can cope with lymphoedema!