A diagnosis of cancer is a life-changing event. It can cause disruptions to the person who has cancer and to their family. This disruption arises not only from the diagnosis itself but also from the treatment and the side effects thereof. The disruptions caused by the treatment and side effects are short lived in some cases, such as nausea and vomiting caused by chemotherapy, but other treatments such as radiotherapy and surgery can have longer-term side effects that can affect the person's life in a more profound way. For most people surgery is the initial treatment for cancer, which can then be followed by radiotherapy or chemotherapy. Apart from the possible immediate side effects of surgery it can also lead to long-term side effects. One possible long-term side effect is lymphoedema—this is especially true for breast cancer surgery and pelvic cancer surgery such as for vulval cancer and penile cancer. For people undergoing surgery for breast cancer, lymphoedema has been reported as one of the most significant concerns that could affect life after cancer (O'Brien, 2021).
The consequences of having lymphoedema can be significant. It can affect all aspects of the person's life including reduced function of the affected limb, psychological wellbeing, and ability to work.
What is lymphoedema?
Lymphoedema is a chronic swelling that is caused by the lymph fluid not being able to drain properly. The result is leakage into the surrounding tissue and accumulation of the lymph fluid and fat in the intestinal tissue causing swelling. There are two types of lymphoedema: primary lymphoedema and secondary lymphoedema. Primary lymphoedema is a congenital condition that affects the structure and mechanism of the lymph nodes and lymph vessels. Secondary lymphoedema can be caused by infection, trauma, blockage of the lymph vessels or surgery.
Some solid cancers can grow and obstruct the lymph vessels or can affect the lymph nodes causing secondary lymphedema. However, the major cause of secondary lymphoedema in cancer is surgery. As well as removing the tumour, nearby lymph nodes may also be removed and this can lead to the disruption of the local lymphatic system.
Prevalence
The number of people with lymphoedema in the UK has been estimated between 263 000 and 422 000, based on varying prevalence rates found in studies (National Lymphoedema Partnership, 2019: 12), whereas the NHS website (2019) says that there are approximately 200 000 people in the UK with lymphoedema. Primary lymphoedema affects about 1 in every 6000 people; most lymphoedema is secondary.
A systematic review and meta-analysis by Cormier et al (2010) reported the following incidences of lymphoedema and cancers by cancer type. They were able to look at 1060 cases of genitourinary cancers, and among these 11% had lymphoedema. When the cancer was identified it was:
- Penile cancer 21%
- Bladder cancer 16%
- Prostate cancer 4%.
Of the 2850 people with a gynaecological cancer the proportion with lymphoedema was 25%. By cancer type this was:
- Vulvar cancer 30%
- Cervical cancer 27%
- Endometrial cancer 1%.
On the NHS website (2019) the estimated figures for those affected by lymphoedema are:
- Two in 10 people with breast cancer
- Five in 10 people with vulval cancer
- Three in 10 people with penile cancer.
However, the true prevalence of cancer-related lymphoedema may not be well known. This is because studies into the prevalence combine primary lymphoedema and cancer-related lymphoedema (National Lymphoedema Partnership, 2019). Another reason is that mild lymphoedema and sub-clinical lymphoedema may be underreported.
Risk factors
Apart from the cancer itself, surgery to remove the cancer and radiotherapy to the lymphatic system, there are some other risk factors for cancer-related lymphoedema.
Authors (Biglia et al, 2017; Dessources et al, 2020) have noted that obesity and especially severe obesity (NHS website, 2019) can be a risk factor for cancer-related lymphedema. It has been suggested that this is because the extra fatty tissue surrounding the lymphatic and venous systems can compromise the flow of fluid from the blood vessels and lymphatic vessels. This can be compounded by inactivity. Inactivity also impedes the return of fluid through the blood vessels and lymphatic vessels, causing a pooling of fluid in the extremities.
The London Cancer Alliance (2015) mentioned nerve damage such as brachial plexus neuropathy can possibly increase the risk of lymphoedema because this type of nerve damage can lead to the affected limb having a limited range of movement and being used less often.
A trauma to the lower or upper limb may also increase the risk of lymphoedema. Surgery to remove the cancer and the affected lymph nodes is one example of trauma but another could be a traffic accident involving the limbs.
Other risk factors can include:
- Cellulitis—repeated bouts of cellulitis could impair the lymphatic system (National Lymphoedema Partnership, 2019)
- Chronic skin problems such as eczema and psoriasis
- Age
- A history of primary lymphoedema in the family.
Diagnosis
Lymphoedema can gradually develop weeks, months or in some cases many years after cancer surgery. To diagnose lymphoedema a past medical history and a comprehensive physical examination of the limb is required.
Early signs that lymphoedema might be developing may be reported by the person. These can include (Hardy, 2011):
- Noticing that jewellery and clothes are becoming tighter
- A feeling of aching, heaviness, discomfort, stiffness, and tightness of the affected limb
- Swelling noticed during the day.
To stage lymphoedema the International Society of Lymphology system is often used (National Lymphoedema Partnership, 2019). The first stage is 0, which is sub-clinical lymphoedema. Stages 1 to 4 depend on changes to the skin, fibrotic tissue, and overgrowths (International Society of Lymphology, 2020).
In the UK, the British Lymphology Society recognises four groups of people (National Lymphoedema Partnership, 2019):
- People at risk
- People with mild uncomplicated oedema
- People with moderate-to-severe oedema or oedema that is complicated regardless of the severity
- People who have oedema and an advanced cancer.
Assessment
There are different ways to assess the extent of lymphoedema. The first involves calculating the volume of the affected limb and there are different methods to achieve this. One is by measuring the girth of the limb with a tape measure at certain intervals along the limb, then using a calculation to find out the volume. Another is the water-displacement method. This method uses Archimedes' principle—when the affected limb is submerged into a tank of water, the volume of water that is displaced is equal to the volume of the submerged limb. A third method is to use infra-red light to measure and calculate the volume of the affected limb—this is perometry.
Besides volume calculations, other tests that be used to assess lymphoedema in the affected limb include:
- Bioimpedance—this uses electrical currents to check for fluid in the limb
- Lymphoscintigram—this uses radioactive dye to check for blockages in the lymphatic system
- MRI scan
- Ultrasound
- CT scan.
Treatment
Lymphoedema is a chronic condition and on that basis, treatment is mainly aimed at controlling the lymphoedema and the debilitating effects (Biglia et al, 2017). Decongestive lymphatic therapy is the current recommended treatment for lymphoedema. There are two phases, intensive and maintenance. The intensive phase can last for several weeks. During this time, the person is taught about skin care to maintain the condition of the skin, in turn reducing the risk of infection. They are also taught exercises to perform and how to do manual lymphatic drainage. This is a specialised massage technique that stimulates the flow of the lymphatic fluid. The person is also fitted with a compression bandage to wear. In the maintenance phase the person continues with the exercises, massage and wearing the compression bandage.
In a small number of severe cases, surgery might be used to treat lymphoedema (National Institute for Health and Care Excellence, 2017). These can include:
- Debulking surgery to remove excess skin and tissue
- Liposuction to remove the underlying fat tissue
- Surgery to restore the flow of the lymph fluid around the affected part of the lymphatic system.
These types of surgery are used to try to reduce the size of the limb affected by lymphoedema.
Research
Research into lymphoedema has looked at:
- Possible risk factors
- Management
- Prevention.
One of the possible risk factors could be genetic. A study has identified four genes that might be associated with having a higher risk of developing lymphoedema (Cancer Research UK, 2020), though more research is needed to verify this.
Specialists managing lymphoedema have looked at using hyperbaric oxygen therapy but the results were not positive (Cancer Research UK, 2010). Other methods of management included complementary therapies such as reflexology and moxibustion with acupuncture.
Conclusion
Lymphoedema is a chronic debilitating condition affecting people with many different types of cancers. Whether it is mild, moderate, or severe, lymphoedema affects the life, lifestyle, and quality of life of these people and their families. This condition needs more research to find out why it happens, who might be at a greater risk of developing lymphoedema, and ways to manage it and prevent it.