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Follow-up ICGs and the Future of Individualized Lymphedema Care

Follow-up ICGs and the Future of Individualized Lymphedema Care

Above image: IGC lymphography (left) and tracing photo (right). IGC found that her arm drained to the neck instead of to the original armpit.

A guest blog post by Louise Koelmeyer. This is a 10-minute read.

In a previous article I wrote with Dr. Hiroo Suami, Mapping the Lymphatics and Monitoring the Progression of Lymphedema, we shared a bit about our backgrounds and described why we use indocyanine green lymphography (ICG) with our patients. We also looked at how it brings them a personalized view of their body’s lymphatic pathways. 

In this article, I would like to explain how a comprehensive approach to lymphedema management after surgery can provide positive outcomes for patients. I will also share the story of a patient who experienced a rare follow-up ICG and the startling outcome of that assessment.

The Future: Individualized Mapping for Every Patient?

Here’s something to think about. In the future, it’s possible that lymphedema treatment could include personalized ICG mapping for every person diagnosed with the condition. Imagine starting from the very beginning of their treatment with a detailed ICG map of each person’s lymphatic pathways. It would provide such positive outcomes.

In the meantime, ICG is another great tool in our toolbox of treatments for lymphedema. Traditionally, when a patient arrives saying, “There’s no way I’m wearing one of those compression garments,” the clinician may simply tell them that the compression garment is the only option because it’s the most effective tool we use to treat lymphedema.

What happens next for this patient if they were forced to wear the compression garment? The compression garment goes into a drawer, hidden away and ignored. This patient won’t treat their lymphedema as we’d hoped and the lymphedema is going to progress. One year later, we’d ask about the compression garment and they’d still have it tucked away in their drawer as their lymphedema size and symptoms gets much worse.

Now we have another tool at our disposal. When someone says compression doesn’t work for them, we have something else to offer them: ICG and a close therapeutic relationship that takes a problem-solving approach. In fact, when we maintain a strong therapeutic relationship, we often find that the patient ends up being more likely to use the compression garment after all.

This is what I mean when I stress the importance of taking a comprehensive approach to managing lymphedema. The ALERT program I manage at Macquarie University fully embraces this comprehensive approach. ALERT stands for Australian Lymphedema Education, Research, and Treatment, and those three words - education, research, and treatment - show the breadth of our mission. Treating people with lymphedema certainly requires research and innovation, but it also involves educating the patients themselves to manage their condition appropriately.

Post-Surgery Experiences with Lymphedema

I have found that many women who have breast cancer treatment are resistant to wearing compression garments afterward. For example, they might not want to wear the garment to work because they don’t want to broadcast the fact that they’ve had breast cancer. Or someone who is a nurse might not be allowed to wear a compression garment at work during their patients’ medical procedures.

This is another important reason why we need additional options to offer people with lymphedema, including women who have undergone breast cancer treatment. With ICG mapping and individualized care, we can offer something beyond a compression garment to help people cope with their lymphedema.

The patients who visit us at the Macquarie University ALERT program receive a personalized four-page report that explains what their lymphatics are doing, defines important terms they need to know like dermal backflow, and describes techniques for managing their condition. They learn how massage works including what direction or pathways to use for massage and what level of pressure to use. 

We also offer them an individual, one-on-one session to go through the exact pathways in their body and understand how it all works. We even take photographs of their body with the pathways drawn on their skin, so they will always have a reference point in the future as they do self-massage and work with their local therapists. It is a fully educational and interpersonal program.

Results of Providing Individualized Care

As a result of the efforts I’ve described above, we’re seeing a much higher rate of patient adherence to the protocols of conservative management. With a close therapeutic relationship and a personalized plan, they’re simply more likely to follow our recommendations to prevent their lymphedema from worsening. 

I believe there is also another factor at play. Traditionally, patients are unaware of the level of pressure they need to use in their own self-massage. They typically don’t use enough pressure to make a difference, then end up reporting to us that self-massage doesn’t work.

This is the perfect opportunity to use the ICG assessment with a skeptical patient and show them in real-time how the right amount of pressure makes a difference. First, you can show them what happens beneath the skin when you apply a very light touch, which is not much. A gentle touch isn’t enough to move the fluids and make progress with the massage. 

Next, you can increase the pressure and show your patient the difference. With a firmer, slower pressure they can make more progress. With surgical patients, this approach helps them stay much more compliant with conservative management after their surgery because they can take charge of their recovery.

A Follow-up ICG: One Patient’s Experience

I’d like to share the experience of a patient I’ve seen with my teaching team. I first saw her about a month after her last chemotherapy and radiation therapy treatments for breast cancer. She’d developed some obvious swelling by the time I first met with her.

We did comprehensive decongestive therapy (CDT) and bandaging, and I would estimate that we got about a 20% reduction in volume. She was at an early stage with her swelling, but she was also at a crucial turning point in terms of our opportunity to intervene. We performed the ICG about three months after I initially met with her and I made personalized recommendations.

At this point, she also started using a compression pump twice a day and wore a custom-made compression garment 12 hours a day. This patient was very motivated to manage her own condition and I continued to see her about every three months along the way. She was making good progress, so I suggested something that’s rather rare: a follow-up ICG one year later.

Follow-up ICGs are uncommon because they’re expensive to administer and quite frankly it’s a victory to get one done in the first place due to waiting times. When you have the rare opportunity to do a second one, you jump at the chance. I suggested it to the patient and she was on board.

What we found on the second ICG was that the speed of her lymphatic flow had increased significantly since the first ICG. The difference was easy to see. It was great for our teaching team to see firsthand evidence of this progress from one full year of compliant treatment, and it was wonderful for the patient to see the results of all her hard work. 

This patient’s experience shows the value of early intervention and education in the treatment of lymphedema. When a patient receives ample information about their condition and has a close relationship with their therapist, they are encouraged to take charge of their own health and will likely see a much better long-term outcome.

About the Author:

Louise Koelmeyer graduated from the University of Sydney, Australia in 1990 with a Bachelor of Applied Science in Occupational Therapy. Since then, she has built almost 30 years of clinical experience in clinical settings specializing in breast cancer rehabilitation and lymphedema early detection, education, and treatment. Louise works as an accredited lymphedema practitioner and is the Director and Senior Lecturer in the Australian Lymphoedema Education, Research and Treatment (ALERT) program at Macquarie University. She is also one of the Australian Principal Investigators working on the “PREVENT” Vanderbilt University research team investigating the early detection and management of breast cancer-related lymphedema.