Palliative care and lymphedema Treating malignant lymphedema in conjunction with a patient’s palliative care team
By Anna Towers
Introduction
With the advent of effective palliative oncological treatments, many patients with metastatic disease are living longer—often for years. This means that you will have more and more lymphedema patients in your practice who either have benign lymphedema (but metastatic disease elsewhere in their bodies) or—they will have malignant lymphedema. If the lymphedema is malignant, it means that there is tumour infiltration of lymph modes or vessels in that particular drainage region of the body. The only way to know the difference is to have information from the oncology team and access to computed tomography, MRI or PET scan reports. All such patients should be treated in collaboration with the oncology team in any case.
The cancer aetiologies that are often involved are: breast, prostate, colorectal, genitourinary, prostate, sarcoma and melanoma.
Early diagnosis of malignant lymphedema
The lymphedema therapist is often the first professional to suspect malignant lymphedema. The scenario might go as follows: a patient who has been in remission for years, who has well controlled benign lymphedema of a limb, suddenly begins to lose control in spite of their best efforts. The therapist then tries to help, however, the patient does not respond as usual to intensive decongestive therapy.
In such a case, the patient must be referred immediately to the oncologist for reassessment, to rule out recurrent cancer. A brief note to the oncologist, along the lines of: “Patient with sudden increase in lymphedema, not responding as usual to conservative therapies, and new pain in affected limb. Please reassess.” The oncologist will know what that means and what to do. Early diagnosis is important, since early oncologic treatment may not only prolong life but also significantly reduce pain, limb weakness and swelling. If malignant lymphedema is confirmed, you should encourage the patient to follow the advice of the oncologist and to have whatever cancer therapy is indicated. Oncologic treatment is the most effective way to deal with malignant lymphedema. However, the patient might be confused about this information. (S)he may have learned that radiotherapy can cause lymphedema. And now the oncologist is proposing more radiotherapy! You will need
to explain to the patient that the situation is now different—that in the present context radiotherapy will help rather than hinder, and that refusing radiotherapy may lead to more swelling and more pain.
QHow should CDT elements be modified in the presence of malignant lymphedema?
?Anna Towers, MD, FCP is a palliative care physician and Director of the Lymphedema Program at the McGill University Health Centre in Montreal, Quebec. She was a founding member and co-chair of the Canadian Lymphedema Framework from 2009 – 2016 and still sits on the Pathways Editorial Board.
Therapists are taught that compression treatments are not contra-indicated in the presence of malignant lymphedema. Compression levels or bandage layers might need to be reduced. MLD can be continued, avoiding any areas of the body where there is metastatic disease. Especially if there are skin tumours, those areas should not receive MLD but they can be treated with flexible compression solutions. Flexible—because malignant lymphedema tends to be variable. One week it will be one size and the next week it might be bigger or smaller. Also, there might be pain and tender skin and subcutaneous tissues in the affected limb. For these reasons, compression garments may not be well tolerated, but bandaging or Velcro-type devices could be used.
Malignant lymphedema often involves the trunk, and CDT needs to be modified to take this into account. For example, the therapist could bandage the lower limb segments, alternating with full limb bandaging. MLD may be especially useful in dealing with truncal edema, unless the treating oncologist says that there is a contra-indication. Abdominal ascites, of course, does not respond to CDT.
QWhat is the prognosis?
It is important for the lymphedema therapist to know the patient’s prognosis. Some cancers with active disease are very treatable, and the life expectancy could be long. In other cases, the prognosis might be months or weeks, and the patient will experience progressive functional decline. How to find out? The patient may not be aware of their prognosis. Nevertheless, you might ask the patient what the oncologist has said about prognosis and prospects for cancer treatment. However, you will also want to ask the patient for permission to contact the oncology team to obtain more information.
QCan one have benign lymphedema in palliative care?
?Absolutely! Example: A woman with arm lymphedema, well controlled, develops brain metastases. In spite of maximal oncologic treatment, her prognosis is several weeks to a few months. Her arm continues to do well, however the therapist and the family will have to help her with self-care for her arm. Patients in palliative care who have limited prognosis will often have generalized weakness. They may have pain, which limits their capacity to look after their lymphedema. The lymphedema therapist can continue to follow these patients, whether the lymphedema is benign of malignant, until the end of life. This, again, needs to be done in close collaboration with the oncology or palliative care team.
QWhat about subcutaneous (SC) needle drainage?
If malignant
lymphedema
is confirmed, you should encourage the patient to follow the advice of the oncologist and to have whatever
cancer therapy is indicated.
Is this “pure” lymphedema or are there other causes for the swelling?
You will need to know from the oncology team what is causing the swelling. Is it simply a question of lymphatic blockage by tumour, or are there other factors? These will have an impact on your therapy and the results.
• Is there low protein state (low serum albumin)?
• Is there kidney failure?
• Has there been a deep venous thrombosis?
• Liver failure?
• Congestive heart failure?
Mixed-type edemas are more of a challenge to treat. Low albumin states in particular can lead to a lot of pitting edema in the lower extremities that progress to the genitals and trunk. If there is no contra-indication to CDT according to the oncologist, then multilayer bandaging (and/or flexible compression devices) along with targeted MLD, started early in the course of the malignant lymphedema, can be very effective in controlling limb size and preserving function.
In patients with mixed edemas and a prognosis of a few weeks or a couple of months, SC needle drainage is performed using several needles, usually 19-gauge butterfly-type, inserted into the medial aspect of the limb, and/or the foot, attached via tubing to a biliary or ostomy bag, and left in place for hours to days. The procedure is also known as reverse hypodermoclysis. Bandaging may be applied on top of the needle drainage tubes. According to reported studies, cellulitis rates may be up to 25%, so these patients need to be carefully monitored and treated with appropriate antibiotic therapy at the first sign of infection.
QIsn’t is hard emotionally for the health caregiver in dealing with these patients?
vulnerabilities, pace ourselves, and seek support ourselves. Being present and available to palliative patients brings many rewards and benefits, to the giver as well as to the receiver of care. LP
Reprinted with permission from Vodder News Dec 2018, Dr. Vodder School – International; www.vodderschool.com
References
?Palliative care providers work in teams. One of the reasons is that this work may be hard emotionally for them, and they rely on each other for support. You will find that working with the palliative care team, sharing your experiences with them, and obtaining support and guidance from them, is the best way to keep you going in this difficult work. One adage that we have in palliative care is: never abandon your patient. However, in order to keep on going, we need to acknowledge our
1. Beck M, Wanchai A, Stewart BR, Cormier JN, Armer. Palliative care for cancer-related lymphedema: a systematic review. Journal of Palliative Medicine 2012 15(7): 821-7.
2. Cheville AL, Kollasch J, Basford JB. Adapting lymphedema treatments in the palliative setting. American Journal of Hospice and Palliative Medicine 2014, Vol. 31(1) 38-4.
3. Towers A. Adapting compression bandaging for the palliative patient, in Compression Therapy: a position document on compression bandaging. International Lymphoedema Framework, UK, 2012: 57-61.
4. Towers A, Hodgson P. Lymphedema Towers A. Lymphedema, Chapter in MacDonald N, ed. Palliative Care –A Case-Based Manual, 3rd edition, Oxford University Press, 2012, DOI:10.1093/ acprof:oso/9780199694143.003.0123.