Under Your Skin Cartoon

Lymphedema and Surgical Treatment Options – The Train Analogy

I’d like to thank Dr. Dhruv Singhal, Director of Lymphatic Surgery at Beth Israel Deaconess Medical Center here in Boston, for sharing his brilliant “train” analogy for lymphedema and for his collaboration in making this latest cartoon happen.

Imagine your heart as the biggest train station in the world. There are red tracks with red trains running away from the heart and dedicated to areas all throughout  your body. This represents your arterial system.

Let’s focus on one location in this analogy: the upper left extremity. Picture a workday, and at 9:00 in the morning, a big red train leaves the heart station, bound for the left arm and hand, and all the passengers get on board.

It makes its way down the left arm to the left hand, and the passengers get off at their various stops along the way and get to work. When the train gets to the end of the line, all of the passengers have gotten off.

At 5:00, it’s the end of the workday, and there are two sets of trains that will take the passengers home (to the heart) again: a blue train (the venous system) and the yellow train (the lymphatic system).

If everything is working well, the trains are on time and there are no problems, all the passengers get on their trains and get a seat, and they all get home on time.

But what if one day, something goes wrong, and the yellow train gets derailed and the passengers get stranded? We’ve all missed a plane or train or bus sometimes, and usually we don’t make a big deal of it, so you might not even know you have any stranded passengers at all for a bit. They might be okay for a little while, waiting around for the next train to come and pick them up.

But what if someone told them “There is no other train coming,” and now they’re stranded for a long time, unable to get home, and just….stuck. They might get a little ticked off. And then they might start getting angry. And they might start to riot.

Those rioting passengers represent the symptoms of lymphedema that might be felt in the body – whether that’s fullness or heaviness or tingling or visible swelling.

So, what can be done when faced with this kind of scenario?

Lymphedema therapists who are doing decongestive therapy (which includes tools like manual lymphatic drainage and compression) can try to help push that yellow train up the track and get it back home. It’s the gold standard in lymphedema treatment, but it can take time and can be resource-heavy.

Excisional surgery procedures (such as debulking and liposuction), which remove excess mass, are like hosing down the rioters, eliminating those stranded passengers altogether.

This can be a great way to reduce the size of the extremity; however, it doesn’t fix the underlying problem. The train is still derailed, other trains are still running and getting stuck behind it, and those other passengers on later trains will end up stranded, too. Without lifelong, 24/7 compression after this kind of surgical procedure, the size reduction won’t be able to be maintained.

Microsurgery treatment options can work with the trains and tracks themselves to try to fix the fundamental problem with the goal of a better physiological outcome.

If the yellow train is trying to return to the heart station and the track is damaged, Lymphovenous Bypass (LVB) surgical procedures can connect the yellow track to a set of blue tracks and trick the yellow train into taking those blue tracks back home. The surgeon can connect the lymphatics to a nearby venous structure to create a new drainage pathway.

But there are times when a train might be beyond repair, and a whole new train and new set of tracks might be needed.

The surgeon might take a train (a lymph node) and some of the train tracks (the node’s afferent and efferent vessels) from a healthy, unaffected part of the body (a donor site) and implant it into the extremity that’s affected. They might take a train from the abdomen and place it in the forearm to help with upper-extremity lymphedema, and when that train gets into its new home, it starts to build its own new train tracks. This is known as Vascularized Lymph Node Transfer (VLNT).

And the exciting and hope-giving future of preventative surgery for lymphedema is that now, with the help of fluorescence imaging, a surgeon might be able to assess potential damage to the yellow train tracks down the line, and then re-route the yellow train onto its neighboring blue tracks BEFORE the yellow train has a chance to hit any trouble.

Whichever treatment option looks like the best fit, the overarching goal is to get that yellow train and its passengers back home and keep them as happy as possible.

Under Your Skin Cartoon

Sentinel Node Biopsies and Lymphedema

The question: “But I only had one lymph node removed when they did my sentinel node biopsy. How could I possibly develop lymphedema if just one little node is gone?”

The answer: Well, let’s take a quick-and-dirty look at how those nodes are distributed and how they work.

We’ve got lymph nodes spread around our bodies, but there are certain larger groupings of nodes in places like your neck (cervical nodes), your armpits (axillary nodes), and your  groin (inguinal nodes). For this example, we’ll focus on the nodes in the axillary region (“axilla” being the proper-albeit-less-humorous name for “armpit”). Think of all these regions as office departments in the corporation that is you.

These little superheroes have multiple tasks – including filtering out harmful stuff like dirt and pathogens, and producing white blood cells called lymphocytes – but for the purposes of this illustration, we’ll talk about their role in fluid balance.

So here in the “right axilla department,” we can see the nodes hard at work. They’re reabsorbing a lot of the water content from the lymphatic fluid, which reduces the amount of lymph that goes back into the venous system.

And let’s say just one of these axillary lymph nodes (along with parts of the transport vessels that run to and from that node) gets taken out of the equation because of a sentinel node biopsy or for some other reason. We’ll call that node “Lenny.”

Many times, that department can totally keep on truckin’, the other neighboring nodes can make up for Lenny’s workload, they re-route the fluid through other nearby lymphatic vessels, and they never even miss the guy. This can happen for a while, or even indefinitely.

But other times, that department really feels Lenny’s absence, and the amount of fluid that needs to get processed out of the tissues of that quadrant and get back into the cardiovascular system can get overwhelming.

This feeling of being “understaffed” can happen right after a node or nodes are removed, or it can happen as much as years down the road if the lymphatic load increases to a point where the department just can’t handle it as efficiently anymore. 

When the lymphatic system gets backed up in a particular region, this can sometimes cause the tissues in that quadrant to swell with protein-rich lymphatic fluid, called lymphedema, and the result can be swelling that you can feel and often see.

So even with only one lymph node removed, the risk for lymphedema still technically exists, though it’s thought to be less compared to multiple lymph nodes having been taken out (imagine Lenny and six or seven of his co-workers disappearing). The risk is low, but it is real.

And plenty of people will never develop lymphedema at all. The hope is that future research in this field will focus on better predicting which people might develop lymphedema. This would mean targeted prevention and intervention strategies, and individualized plans for risk-reducing behaviors. In the meantime, the National Lymphedema Network has some general “healthy habits” that people who might be at risk for lymphedema can follow to help reduce that chance of developing swelling. Check it out here.

Stay tuned for more episodes of “Under Your Skin” on lymphedema and manual lymphatic drainage! There are many more nerdy stories to tell!

 

Treatment Room

In This Treatment Room, It’s Your Show

Picture this: It’s your first time sitting down for an intake interview with a massage therapist you’ve never seen before. You may even be about to have your first massage ever. The treatment room is unfamiliar, not to mention the person sitting across from you and asking you pretty personal questions about your body, your medical history. Sure, there are pillows and towels and calming artwork around, soft music is playing, you know you’re supposed to be relaxed, or at least on your way there, but right now it just feels…weird. You’re answering the practitioner’s questions, but you can hear that part of your brain rapid-firing its own questions: “What is this person going to be doing to me? What if I don’t like it? Is it going to hurt? Is she going to touch my feet, because GOD, I hate having my feet touched.”

The short answer is: You’re in charge.

Let’s zoom into that picture a little more: You’re going through treatment for BRCA2 breast cancer. You’ve already had a lumpectomy and 18 weeks of chemotherapy, which is what your medical team recommended as the best course of action. You still have your chemo port in place, just under your collarbone, and during your massage intake, you’re thinking, “Is she going to want me to lie on my stomach? Ugh, I really don’t want to do that—it’s not going to be comfortable for me. Do I say something?”

Yes, say something. And no, you don’t have to lie on your stomach. Your comfort is the top priority.

Now that chemo is finished, you’re in the middle of external beam radiation therapy and, once that’s over, you’re told you will need a double mastectomy and a hysterectomy, because BRCA2 is an aggressive cancer, and the doctors don’t want to take any chances. You feel like you’ve been doing what your medical team has been telling you to do for quite a while now. You really like and trust your doctors and nurses, you know they are drawing up and executing your treatment plan because they feel it’s the best plan of action, the highest chance of success. You show up to the hospital or the treatment center, they tell you where to go, what to wear, where to sit or lie down. They administer the injection, turn on the beam, and, well, you do as they say.

Not so in the massage treatment room.

Whether you’ve been traveling a complex medical road and having a lot of decisions about what happens to your body being made for you, or whether you have a history of good health and just hate having your face touched…YOU get to call the shots during your session.

In my own practice, I tout this often, and with pride. I love asking, “What can I do for you today?” and many times I’ve seen a look pass over someone’s face when I do. Perhaps it’s relief, or a feeling of empowerment. Clients have heard me say many times: “This is your show.” Don’t want to lay face-down? You don’t have to – we’ll get you comfortable with pillows and towels lying on your side, and I can still work on your back that way. Sound good? Having your feet rubbed makes you feel instantly relaxed? Guess what—that’s on the menu.

And this your-show concept applies to every client, every session, not just the first time. Yes, you come in every week for lymphatic drainage for the lymphedema in your arm, but today can we add in 5 or 10 minutes of work on your neck because you slept on it funny? Done. You got it.

The massage treatment room gets to be your space for the time that you are in it. Sometimes there is quiet, sometimes there is sleep. Sometimes there are kvetch sessions, belly laughs, or excited last-night’s-football-game discussions. Sometimes there are tears. The space is what you need it to be, the treatment tailored for you, as you are that day, for those moments. Your voice is heard, you are listened to, you are honored, you are supported.

Touch of Kindness Presents a Poster at the S4OM Oncology Massage Summit

I was honored to be asked to present a poster for Touch of Kindness at the 4th Oncology Massage Healing Summit, 2016, sponsored by the Society for Oncology Massage (S4OM), at Northwestern Health Sciences University in Bloomington, Minnesota. The summit abounded with classes and workshops for oncology massage therapists, and there was plenty of rich discussion about oncology massage education, research, and funding, both in private practice and in hospital settings. I was grateful to have so many conversations with therapists from not only around the country, but around the globe.

Many massage therapists said they have felt in the same pickle that I have – wanting to find a way to ease the financial barriers to oncology massage but still needing to bring in enough income to make a living and stay in business. Having the poster at the summit was a fun, visual, conversation-starting way to present the pay-it-forward model as one possible solution to this problem, and the comments were great:

“Huh. This is so EASY!”

“What a great idea! So simple, but it seems like a win-win-win.”

“I feel like I’m always apologizing that I don’t take insurance. But then if I could offer something like THIS…”

And my favorite: “Oh my gosh, I cannot WAIT to get back home and do this in my own practice!”

Look for an upcoming column in Massage Today magazine on Touch of Kindness as well. Word is spreading!

Touch of Kindness was proud to present at poster at the 2016 Society for Oncology Massage summit in Minneapolis.

Touch of Kindness was proud to present at poster at the 2016 Society for Oncology Massage summit in Minneapolis. Photo by Nanci Newton.

Lymphedema – Are You or Someone You Know At Risk?

Lymphedema is a largely underdiagnosed condition, and anyone who’s had any type of mastectomy, lumpectomy, radiation treatment, lymph node removal, node biopsy, or even surgeries or trauma to the limbs should absolutely know what it is, ways that you may be able to reduce your risk of developing it, and early signs.

Education about this is so very important, and we’ve got to spread the word.

So let’s jump in and talk broad brush strokes about what lymphedema is, how signs and symptoms often appear, and about some risk reduction practices.

The lymphatic system and lymphedema

Your lymphatic system is largely responsible for the fluid balance in your body, and it also plays a role in immune function. You can think of the lymphatic system like a kind of plumbing system. The tiny vessels pull excess fluid from your tissues and with that, they collect things like dead cells, bacteria, and waste products, transporting them to the lymph nodes to be broken down. This is all then sent to the cardiovascular system and then eventually your urinary system takes care of what excess fluid and waste products need to be eliminated.

When there is damage to the lymphatic system, this circulation can’t happen, and the result is a backup of this protein-rich fluid that instead of being exported to your venous system is now accumulating in the tissues. This can cause swelling and thickening of the skin.

Primary lymphedema occurs when the lymphatic system is malformed at birth, even though symptoms may not show up until puberty, during pregnancy, or even later. This can be hereditary or spontaneous. Secondary lymphedema occurs as a result of an external factor, the most common causes being mastectomies, lumpectomies with radiation and/or removal of lymph nodes that may cause damage to the lymphatic system.

In its very early stages, lymphedema can spontaneously resolve on its own, but the chance of it returning is always present. In later stages, lymphedema can be managed with tools such as manual lymphatic drainage (MLD), bandaging, compression garments, and diligent skin care, but there is no cure. Lymphedema is a life-long, chronic condition. Life-long .This is often not an easy thing to hear.

What are some of the signs?

Symptoms can come on a few weeks after a procedure, or years later, or not at all. The onset of lymphedema can be gradual (which is most common), or it can sometimes come on quickly. Some symptoms may be felt before any swelling is ever actually visible, such as feelings of “heaviness” or “achiness” in the limbs. In the arms, it often starts in the forearm; and in the legs, it often starts in the foot or ankle area. It is also possible to develop lymphedema in the head, neck, or genital areas, though arms and legs are most common.

If swelling starts to become visible or noticeable (like suddenly your wedding rings stop fitting and you had a mastectomy on your left side), indentations that do not immediately disappear when you press in with your fingers (also called “pitting edema”) may be another sign, but this can vary as well.

If you believe you may be experiencing symptoms, contact your doctor for an evaluation and ask questions. A lot of questions, and don’t stop until you feel you are getting answers. I encourage you to ask lymphedema therapists in your area questions that you may be able to bring back to your doctor for clarification or ideas.

I’ve had a mastectomy/lumpectomy/radiation/node removal. How can I reduce my risk of developing secondary lymphedema?

Below are just a few of the risk reduction practices outlined by the National Lymphedema Network, reworded by me. For a full list sanctioned by the NLN, click here: https://www.lymphnet.org/pdfDocs/nlnriskreduction_summary.pdf

1. Your Skin

  • Keep your skin protected to reduce the risk of infection. Keep the at-risk extremity clean and dry, and apply moisturizer daily.
  • Avoid blood draws and injections on the at-risk limb.
  • Wear gloves while doing activities that may cause injury to the skin. If you do get a scratch or puncture, wash it well with soap and water and watch closely for any signs of infection.

2. Exercise/Lifestyle

  • Gradually build up the duration and intensity of any activity or exercise, and take frequent rest periods during activity to allow the at-risk limb to recover. For a position paper on exercise from the NLN, click here: https://www.lymphnet.org/pdfDocs/nlnexercise.pdf

3. Avoid Limb Constriction

  • Avoid having blood pressure taken on the at-risk extremity , and wear loose-fitting clothing and jewelry.

4. Compression Garments

  • Consider wearing a well-fitting compression garment for air travel. The decrease in cabin pressure puts stress on both the lymphatic and circulatory systems, and this can increase swelling.

5. Avoid Extreme Temperatures

  • Avoid exposure to extreme cold, which can cause rebound swelling as well as chapping of the skin. Avoid prolonged exposure (more than 15 minutes) to heat, such as hot tubs or saunas.

The bottom line: Education is power. Spread the word about lymphedema . Mention it to your friends, your family, that woman in your dance class who just had a double mastectomy. Even though many people who have undergone things like surgery, radiation, or lymph node dissection will never develop it, it pays to know the ways to reduce your risk and the signs that can lead to early detection. Listen to your body, treat it with utmost care, and keep an open dialogue with your healthcare team.

Thank you for being an advocate for your health and for the health of those you care about.

Resources for further information:

National Lymphedema Network http://www.lymphnet.org/
Lymphedema Awareness Foundation http://www.lymphaware.org/
Step Up Speak Out (specific to breast cancer-related lymphedema) http://www.stepup-speakout.org/