Support and wellbeing

Collage of three images. All three images show our Lymphodema Team with patients.

Patient journey

What happens on the first day of treatment?

Your clinician will ask you about the ‘story’ of your swelling, about your general health, what medications you take and your lifestyle (work, hobbies etc.)
You may need to undress to your underwear, this will allow the health care professional to look at your swelling, as well as the area around it.
The health care practitioner will want to examine you by feeling the swelling to assess what the tissues of your skin is like. This should not be painful but if you are sore, they will stop.
Weight management is an important part of managing lymphoedema. As part of your assessment, the clinician may weigh you. This gives them and you a baseline (starting point) to work from.
The clinician may measure the area of swelling. Measurements may be taken of both limbs/both sides if they are swollen or not. This allows a comparison of what is the usual size of the area. These measurements provide a starting point to check how your swelling changes over time and how well your limb(s) respond to treatment.
If the swelling is in your legs or feet, the clinician may carry out a circulation test, we call this a doppler test, it involves taking the blood pressure in your arm and ankles.

How will I hear about my appointments?

Your GP or your cancer specialist will refer you to the lymphoedema service.  
Sometimes patients attending the Royal Surrey Cancer Centre are out of the catchment area for the lymphoedema service. This is because the lymphoedema service is commissioned locally by the ICB and not part of the acute hospital services.  If you fall out of the catchment area, we will signpost the nearest service. Discover other lymphoedema services on the British Lymphology Society website (opens in new tab).

What happens before my treatment?

Before your treatment you will be sent a patient information leaflet produced by the British Lymphology Society, and a frequently asked questions leaflet. Visit the British Lymphology Society (opens in new tab) website for more information.
We aim to see all new cancer referrals within six weeks. Unfortunately, the waiting time for non-cancer lymphoedema is longer (18 weeks) due to this we host an online educational session to enable patients to self-care while they wait for their first appointment. You will be sent details for this if your lymphoedema is not due to cancer treatment.

What happens during my treatment?

Your progress will be monitored and the frequency of your visits will depend upon what treatment is needed. In most cases the compression garments combined with movement and activity regime enables patients to self-care. If your treatment requires bandaging treatment then you will need to attend more frequently in the early stages.

 

Who will look after me during my treatment?

The lymphoedema team is made up of nurses and physiotherapists. Although we do our best to provide continuity sometimes you may see a different clinician.

Will my appointment be on time?

We allow 60 minutes for the first consultation, the 30 minutes for follow-ups. We generally find our clinics run to time.

What side effects may I suffer from?

If you have lymphoedema it is important that you know about the risk of developing cellulitis. Cellulitis is an acute spreading inflammation of the skin and subcutaneous tissues characterised by pain, warmth, swelling and erythema.
A guide on the management of cellulitis can be found on the British Lymphology Society website (opens in new tab).
When do I need to seek help?
If you think  you have cellulitis seek urgent help from your GP, if you are very unwell attend the Emergency Department (A&E) of your local hospital. The lymphoedema team are not able to prescribe the antibiotics but can give advice on the management of cellulitis in the short and long term.

What happens when my treatment ends?

The lymphoedema services uses Patient-Initiated Follow-Up (PIFU). When you and your clinician agree that your symptoms are stable you will be placed on the PIFU pathway. This puts you in control of making an appointment to see the lymphoedema team when you next need it. You will not be discharged unless you move out of the catchment area.