Adie MacKenzie, clinical advisor at AIROS Medical, shares her first person account of her experience with breast cancer and lymphedema up to today.
In 2010, I was in the first year of my new, mid-life career, working as a Physical Therapist Assistant at a prestigious medical center in Nashville, TN. The clinic specialized in providing care to patients with chronic pain and those going through cancer, and I was scheduled to take the training to become a Certified Lymphedema Therapist (CLT). My background as a massage therapist for many years had given me some exposure to clients with lymphedema and to the magic of Manual Lymphatic Drainage (MLD), the hands-on massage-like component of care for the condition. I was excited about the future, but unaware of some of the intense personal experiences about to unfold.
On April 1st, I went for a follow up with my breast care specialist. I was under close surveillance due to my family and personal history and I had frequent diagnostic MRIs due to difficulty discerning abnormalities on the mammograms of my dense, fibrotic breasts. And after a few years of these screenings, I was feeling pretty confident, until this morning, when my doctor said, “You have breast cancer”. I replied, “I know it’s April Fool’s Day Doc, but that’s not funny!”
He was not joking. I spent the rest of the year going through surgery and chemotherapy. Eventually, based on the associated statistics in my specific situation, I opted to avoid radiation and to undergo bilateral mastectomy with total submuscular breast implant reconstruction. With my family history of breast and ovarian cancer, and my own diagnosis of triple negative breast cancer, I wanted the sense that my risks of recurrence were low. I did not want to think about my breasts and their health anymore.
Breast cancer and lymphedema
Many women, most statistics suggest 1 in 8 of us, will face these types of diagnoses and decisions. And most of us make our choices based on our concerns about our longevity. Unfortunately, many still make this decision without a lot of information from our providers about the Quality of Life (QOL) consequences of our decisions. Although this situation is improving, I still have patients come to me and say that their physicians did not discuss the risk of lymphedema with them before treatment, or that they were provided a bag with various handouts including, they later learn, one about lymphedema.
Many, like me, go home from pre-intervention consultation and put that little pink bag of important info somewhere out of sight and don’t think of it for months. They make their treatment decisions without the necessary information to evaluate what their choices will mean for the long-term expectations of their day-to-day QOL to follow. One patient told me that upon confronting her doctor with this concern later, the physician said, “I didn’t want to scare you”. The patient replied “Doc, you told me I had breast cancer. I was already scared! You could not have made that worse, only better with this information”.
Another patient with very early stage breast cancer who only had a small surgery and local radiation told me “Breast cancer was a blip; lymphedema has ruined my life.”
How does BCRL occur in the first place?
Lymphedema occurs when the lymphatic system, our body’s cellular waste transport and filtration pathway and critical component of our immunity setup, is damaged. The quadrant of the body that is filtered through the regional lymph nodes, and in the case of breast cancer that will be one of the upper quadrants (from the navel up divided down the midline) draining to the armpit on the side of the tumor, will be at risk of or prone to swelling. Often the arm is the most affected. This high-protein edema is referred to as Lymphedema, as it is different than the type of swelling that occurs with an acute injury, say an ankle sprain, which resolves in a short period of time. This lymphedema swelling is potentially chronic and may be cumulative. The risk is lifelong. Therefore, it’s important to learn about how to manage and minimize it for the best QOL.
Our risks of developing lymphedema after breast cancer treatment are very individual, but according to some recently published information, approximately 40% of the 3.8 million breast cancer survivors in the US  will develop the condition for which there is currently effective treatment but no cure. The amount and type of cancer intervention, patient lifestyle and co-existing health concerns will all play into the risk level. For example, a patient may have a tumor removal often referred to as “lumpectomy” at very early cancer stages that may be uncomplicated and not require other treatment. Lymphedema risks associated with this are low. Add in lymph-node removal for cancer staging, and the risks increase somewhat with a correlation to the number of nodes removed. Add in radiation, the risk increases again. Certain chemotherapeutic agents, especially Taxol and other Taxanes, increase the risk again. Other health factors such as a high Body Mass Index (BMI) (being overweight or obese) and sedentary lifestyle add to the likelihood of developing lymphedema. And some of us are just formed in a way that makes our lymphatic system less efficient in draining the affected area, making any amount of damage to the system more profound. All of these factors have an impact on how well our body manages the damage that occurs to the lymph nodes and vessels as a result of treatment or even of the cancer itself.
How to help
So, as it is Breast Cancer Awareness Month and it is likely, based on the above cited statistics, that either you or someone you love has or will have breast cancer, I’d like to share some of my thoughts on how to recognize and manage BCRL.
- If you are being treated for breast cancer, try to get baseline measurements of your affected limb and quadrant before treatment begins. Ask your oncologist or surgeon to refer you to a CLT and have them measure the arm and chest on the side of your tumor. This can help clarify some of the symptoms that occur later and may indicate the onset of lymphedema swelling.
- If you have already had cancer treatment, try to get a referral to a CLT as soon as possible even if you have no signs or symptoms of swelling. Lymphedema is a lifelong risk and having the education to recognize it, early measurements and a relationship to address it as soon as it occurs can minimize the impact of the condition.
- If you know you have lymphedema, are you getting all of the care that can maximize your QOL? A CLT can teach appropriate exercise, help you advance this exercise safely, provide manual therapy (MLD, myofascial release, etc), and can help guide you in the right kind of compression garments and devices for your unique situation. There are special garments for sleeping, for day-time wear, for reduction and/or prevention of swelling. All of these details are within the expertise of the CLT. If you can’t find a local provider, you may be able to find a telehealth-like option to address your needs.
- If you find that you are experiencing chronic swelling, you may benefit from a Pneumatic Compression Device. This type of device helps reduce edema, minimize or prevent fibrotic changes to the skin, and help you feel better. What could be easier?The device is already in your home and available at the push of a button.
There is so much to discuss in the management of BCRL, however these are just a few brief thoughts. For much more information and resources, or to find a therapist, you can go to:
The National Lymphedema Network
Lymphatic Education and Resource Network
Lymphology Association of North America
It’s wise for us to become more aware of things we can do to reduce our risk of developing cancer. Doing so will help us to maximize our QOL if indeed we do experience breast cancer with or without lymphedema. Education is key, and I hope to have offered some resources here for that. In all cases, breathe deep, think positive thoughts, and know that we are here to help you.