ADVICE FOR PATIENTS REGARDING THE PREVENTION OF LYMPHOEDEMA FOLLOWING CANCER TREATMENT

Written by Jan Simmons Macmillan Lymphoedema Project Lead, The NLCN www.nlcn.nhs.uk/ProServLymph

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Contents

Risk of developing lymphoedema after treatment for cancer

The risk of developing lymphoedema has many variables and for many it may never occur. Some people are unfortunate to develop lymphoedema soon after surgery to remove lymph nodes or a cancerous tumour and others may develop the condition many years after treatment. It is reported that some people have developed lymphoedema up to 30 years later following cancer treatment which demonstrates the importance of giving patients preventative advice to follow for life following surgery or treatment.
It is not easy to identify who may develop lymphoedema but from research and clinical experience of specialist practitioners it is felt that an infection or trauma to the at risk limb/area is often the catalyst

Some people who have been treated for cancers are more at risk than others to develop lymphoedema.

  • People with breast cancer who have had breast cancer surgery such as simple mastectomy, lumpectomy, reduced modified mastectomy along with underarm lymph node dissection
  • People who have had radiotherapy treatment to the axilla (underarm) or groin region
  • People with malignant melanoma of the arms or legs who have had radiotherapy treatment and/or lymph node dissection
  • People who have had surgery to head and neck area and lymph node dissection and or radiotherapy
  • Men who have had treatment for prostate cancer, testicular cancer and penile cancer who have had surgery or radiotherapy to the pelvic region
  • Women who have had treatment for gynaecological or urological cancer, who have had surgery including lymph node removal and/or radiotherapy treatment
  • Patients who have had surgery and/or radiotherapy for bone tumours
  • Patients with advanced cancer in the breast/chest or pelvic regions
  • Other risk factors such as post surgery radiotherapy to the lymph nodes, the persons lymphatic anatomy (this has sometimes been found to be different from one person to another)

In non cancer, hereditary lymphoedema & chronic oedemas

the condition may start at different ages and slow to develop but risk factors such as being overweight, difficulty with walking/mobility, skin conditions such as cellulitis and extremes of temperature are all known to exacerbate or start lymphoedema in someone who has an underlying problem with their lymphatic system.
If there is a close relative in the family who has lymphoedema it would be beneficial to follow the simple prevention advice listed below and reporting any signs of swelling noticed to the GP and emphasising the family medical history.

There is much research taking place into the occurrence of hereditary and non cancer lymphoedema but still much is unknown. The Lymphoedema Support Network produces in-depth patient information and has a staffed helpline. www.lymphoedema.org/lsn/index.html

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General advice for all people at risk of developing lymphoedema and those with the condition:

  • No injections, acupuncture or blood pressure monitoring on the affected or at risk limb (arm/ leg) unless in an emergency. This may mean that some patients who have had lymph nodes removed from under each arm may choose to have blood tests taken from their feet which they are correct in asking for in any situation other than an emergency. Blood pressure and blood tests can be safely carried out in the majority of the population without any detrimental effects
  • Eat a normal healthy diet and keep weight within normal limits
  • Moisturise the skin daily with neutral moisturisers (such as Aqueous/E45 cream or lotion that does not contain Lanolin as this may irritate the skin)
  • Protect the skin from cuts, scratches and injury
  • Be careful when in the sun – use sunscreen and avoid over exposure
  • Use an electric razor in affected area for hair removal (i.e. following lymph node removal in the armpit) - wet shaving, waxing or epilating may cut the skin and introduce infection
  • Avoid using a sauna or jacuzzi (extremes of temperature) may precipitate lymphoedema and are best avoided
  • Use your arm/leg (s) as normal but avoid activities which are not usual for you to avoid injury or strain
  • Gently exercise the arm or leg and avoid sitting in the same position for too long
  • For people who may have a higher risk of developing lymphoedema as described on previous page - when going on a long haul flight it may be a good idea to have a compression sleeve or stocking fitted to wear for the duration of the flight as some normal swelling may occur and the compression may help to prevent any additional swelling such as lymphoedema developing. Flight socks or ‘tubigrip’ can be brought in a pharmacy but be careful these are not too small which may cause an elastic band effect, cutting off lymph flow to the at risk area
  • If surgery is required to the area in which you have swelling or have had lymph nodes removed, seek advice from your lymphoedema specialist unless an emergency procedure

In addition to the above advice, there are some specific guidelines for people who have been treated for breast cancer or malignant melanoma where lymph nodes have been removed from the axilla (armpit) area:

  • No blood pressure measurements on the endangered arm (except in emergency)
  • No injections (either in the skin or in the muscles, veins or joints) on the side of the endangered arm (except in an emergency)
  • Contact a doctor immediately if signs of infection develop in or adjacent to the arm such as the breast or back
  • No acupuncture on the endangered side
  • Avoid cold and heat packs directly on the at risk area (extremes of temperature encourage swelling)
  • Take care carrying out chores & activities at home such as ironing, cooking& gardening due to risk of injury
  • Make sure that bra straps are not too tight and cutting into the shoulder or chest area
  • If a breast prosthesis is worn this should be as light as possible to avoid the bra strap cutting into the shoulder or chest
  • Avoid tight fitting clothes around the arms, shoulder or chest
  • Take precautions or avoid destinations with high levels of insects (i.e. mosquito bites and risk of infection)
  • Avoid frostbite (wear warm gloves during the cold season)
  • At the hairdressers, protect your shoulder and upper arm from the heat of the hairdryer

In addition to the general advice, specific advice for patients at risk of developing lymphoedema of the leg following lymph node removal in the groin or for those with lymphoedema:

  • Avoid jobs that require standing for several hours
  • If at risk of developing lymphoedema observe and seek advice for swelling affecting any part of the legs, including the inner upper thighs
  • When sitting for long periods change position regularly
  • Maintain good bodily hygiene and dry well between toes
  • Do not wear tight shoes and/or high heels that cut off circulation or cause blisters/cuts
  • Do not walk barefoot outdoors due to risk of injury and infection
  • Do not cut your cuticles
  • Avoid injections (either in the skin or muscles or joints) on the endangered side
  • Take precautions or avoid destinations with high levels of insects (i.e. mosquitoes)
  • Avoid frostbite (wear warm stockings during the cold season)
  • Contact your doctor in the event of fungal infections (yellow, broken nails, lacerations between the toes) and treat until infection has resolved
  • Contact a doctor immediately in the event of an infection (fever, reddening of the skin, chills)
  • Do not wear tight underwear or clothing, take care that belts are not too tight
  • Varicose veins should not be treated surgically unless such treatment is absolutely indicated
  • If surgery to the at risk area is required monitor closely for signs of infection and seek immediate medical help if infection develops (if your doctor is unaware of the antibiotic guidelines contained in appendix 2 you may want to give them a copy of this)

DISLCIAMER: this information has been written for the public and health professionals who have an interest in lymphoedema from a variety of reliable sources which are in the public domain. The author is not responsible for how the information is interpreted or used.